Medina: Manual of Palliative Medicine 2nd Ed (Complete)

Manual of
Palliative Medicine
Second Edition
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Supportive, Hospice and Palliative Care

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You matter because you are you.

You matter to the last moment of your life, and we will do
all that we can not only to help you die peacefully, but
also to live until you die.
—Dame Cicely Saunders
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Manual of
Palliative Medicine
Second Edition
-----------------------------------------------------
Supportive, Hospice and Palliative Care

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Manuel F. Medina, Jr., MD

Associate Clinical Professor
Supportive, Hospice and Palliative Medicine
Department of Family and Community Medicine
University of the Philippines
Philippine General Hospital
Manila, Philippines
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Palliative Medicine is a rapidly advancing field. As our experience in the field and new
research expand our knowledge, our treatment and management options also change.
The information and recommendations presented in this manual are based on sources
believed by the author to be reliable. However, the application and use of any information
and recommendation presented in this manual must be weighed against the reader’s own
clinical judgment, based on but not limited to such factors as individual patient
characteristics and conditions, and benefits versus risks of suggested treatment options.
The reader is encouraged to compare information and recommendations presented herein
with other sources and authorities.
Great care has been used in compiling and checking the information in this book to ensure
its accuracy. However, in view of the possibility of human error, or advances and changes
in the field, as well as individual patient variations- the uses, effects, and dosages of
drugs, and the management regimens that may be needed by individual patients may be
different from those given in this book. Neither the publisher nor the author shall be
responsible for such differences and inaccuracies. Neither the author nor the publisher
warrants that all the information and recommendations contained in this manual is
accurate and complete in every respect, and they disclaim all responsibility for any errors
or omissions, or for any results obtained from the use of information and
recommendations contained in this book. Errors can occur and the reader should check
other sources and references, as well as the manufacturer’s recommendations provided
with each product.
c 2005, 2007 Manuel Medina, Jr., M.D.
First edition published 2005

ISBN 971-92505-3-4
This publication may not be reproduced or transmitted in its entirety without permission.
Permission to photocopy or reproduce some pages for internal or personal use is
permitted for students and physicians in training.
This version of the second edition of this manual should not be exported or distributed
outside of the Philippines.
Printed in the Philippines
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To Mia
Whose love for her pediatric cancer patients

gives me reason to
care, hope and persevere in everything.
And for her unfailing and loving
encouragement and help
in all my endeavors.
To Baby Maura
Whose smile and laughter give me and Mia

the joy, peace, and strength to
continue helping and caring for
our patients.
And
To my father, Manuel
my mother, Gloria,
and my aunts, Marita and Lita.
For all their love, guidance and support.
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CONTENTS
Preface ix
1. Palliative Medicine:
History, Philosophy, and Standards of Care 1
2. Communication and Counseling in Palliative Care 40
3. Evaluation and Management of

Psychosocial and Spiritual Problems 55
Psychosocial Problems 55
Adjustment Disorders 57
Anxiety 61
Depression 65
Suicide 72
Anger 73
Psychosocial Approaches and Interventions 74
Spiritual Problems 101

Grief and Bereavement 112
4. Evaluation and Management of Pain 121

Non-Pain Symptoms and Problems 160
Anorexia and Cachexia 161
Bowel Obstruction 167
Constipation 172
Cough 177
Delirium 180
Diarrhea 188
Dysphagia 191
Dyspepsia and Gastroesophageal Reflux 193
Dyspnea 195
Edema 200
Fatigue 204
Hiccups 207
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Muscle Spasms 208
Nausea and Vomiting 209
Oral Problems 216
Pressure Ulcers, Wounds and Fistulas 223
Pruritus 227
Respiratory and Oral Secretions 231
Sleep Problems 232
Urinary Problems 234
Refractory Pain and Other Symptoms 237

Urgent and Emergent Problems 238
7. Palliative Chemotherapy, Surgery and

Radiation Therapy 275
Palliative Chemotherapy 276
Palliative Surgery 279
Palliative Radiation Therapy 281
8. Ethical and Legal Aspects of Palliative Care 285
9. Palliative Care of Patients with

Non-Cancer Illnesses 301
HIV disease, Multi Drug Resistant TB, Rabies and Malaria 302
Advanced Heart Failure 308
Advanced Respiratory Diseases 319
Kidney Failure 324
Liver Failure 337
Advanced Neurological Diseases 343
10. Palliative Care of Pediatric Patients 348
11. Palliative Care of Geriatric Patients 382
12. Palliative Care during the Terminal Phase and

the Death Event 394
Suggested Readings 401

Index 429
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PREFACE
You matter because you are you. You matter to the last moment of your life, and we will
do all that we can not only to help you die peacefully, but also to live until you die.
—Dame Cicely Saunders
Palliative Care comforts and supports individuals who are living with life-threatening and
life-limiting illnesses, and their families. Palliative medicine aims to relieve pain and
discomfort, improve quality of life, minimize suffering, and preserve dignity. Palliative care
strives to meet the physical, psychological, social, and spiritual expectations and needs of
patients and families.
This edition of the Manual of Palliative Medicine, published two years after the first edition,
has been written with the original philosophy in mind. The basic aim of the book is to be a
comprehensive, current, and concise presentation of information useful for making
diagnostic, therapeutic, and management decisions for patients and families who are
receiving supportive, hospice, and palliative care. The complex problems and processes
involved in the care of individuals and families who are living with life-limiting illness
requires a balance of the art and science of palliative medicine, as well as experience,
common sense, and sound judgment. This manual gives the reader practical approaches
to common problems and issues in palliative care; the knowledge to plan, organize, and
evaluate the care of your patients and their families; and a framework to incorporate the
ever-expanding knowledge base on the various clinical, psychological, social, and spiritual
aspects of supportive, hospice, and palliative medicine.
For the past two years, the field of supportive, hospice, and palliative medicine continues
to mature and advance very rapidly. All chapters of the book have been revised and
updated. I have only included basic advances, approaches, and concepts that are helpful
in clinical practice.
I thank my students- the medical clerks, interns, residents, and fellows whose enthusiasm
to learn about palliative medicine continues to influence the evolution of this book.
Manuel Medina, Jr., MD

Associate Clinical Professor
Supportive, Hospice and Palliative Medicine
Department of Family and Community Medicine
University of the Philippines-Philippine General Hospital
Manila, Philippines
Diplomate, American Board of Family Practice
Family Practice Residency Group (1995-1999)
McLaren Regional Medical Center-Michigan State University
Michigan, USA
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Palliative Medicine:
1 History, Philosophy, and Standards of Care
Modern medicine has two principal responsibilities: the prevention and treatment of disease, and
the relief of suffering. The curative approach concentrates on curing the disease. Discomfort and
symptoms are considered clues in the process of diagnosing the disease, and each diagnosis
leads to tests and treatments aimed to cure the disease. A dying individual is considered a
treatment failure. The palliative approach concentrates on the relief of pain, discomfort, and
suffering. Symptoms are considered to be more than disease manifestations, but important causes
of discomfort and suffering that need to be relieved even if the disease cannot be cured. Death is
not a treatment failure, but a part of the clinical course, a part of the course of life.
Models and Standards of Palliative Care
Definition of Palliative Care

Definitions of palliative care have evolved as the field evolved. In 1990, the World Health
Organization (WHO) defined palliative care as “the active total care of patients whose disease is
not responsive to curative treatment. Control of pain, of other symptoms, and of psychological,
social and spiritual problems is paramount. The goal of palliative care is the achievement of the
best possible quality of life for patients and their families. Many aspects of palliative care are
applicable earlier in the course of the illness, in conjunction with [other] treatment. It affirms life and
regards dying as a normal process, neither hastens nor postpones death, provides relief from pain
and other distressing symptoms, integrates the psychological and spiritual aspects of patient care,
offers a support system to help patients live as actively as possible until death, and offers a support
system to help the family cope during the patient’s illness and in their own bereavement.” WHO
has updated this definition to reflect the full scope of palliative care, defining it as “an approach
which improves quality of life of patients and their families facing life-threatening illness through the
prevention and relief of suffering by means of early identification and impeccable assessment and
treatment of pain and other problems, physical, psychosocial and spiritual.”
In 1993, the Introduction to the Oxford Textbook of Palliative Medicine, Doyle, Hanks and
MacDonald defined palliative care as: "the study and management of patients with active,
progressive, far-advanced disease for whom the prognosis is limited and the focus of care is on the
quality of life."
In 2000, the American Board of Hospice and Palliative Medicine defined palliative medicine as: "the
medical discipline of the broad therapeutic model known as palliative care. This discipline and
model of care are devoted to achieve the best possible quality of life of the patient and family
throughout the course of a life-threatening illness through the relief of suffering and the control of
symptoms. Such relief requires the comprehensive assessment and management of the physical,
psychological, social, and spiritual needs of patients and their families. Palliative medicine helps
the patient and family face the prospect of death assured that comfort will be a priority, values and
decisions will be respected, spiritual and psychosocial needs will be addressed, practical support
will be available, and opportunities will exist for growth and resolution."
In 2004, the Clinical Practice Guidelines for Quality Palliative Care was developed by the National
Consensus Project for Quality Palliative Care, a group of over 100 representatives from the
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palliative care community. It stated that “the goal of palliative care is to prevent and relieve
suffering and to support the best possible quality of life for patients and their families, regardless of
the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care
and an organized, highly structured system for delivering care. Palliative care expands traditional
disease-model medical treatments to include the goals of enhancing quality of life for patient and
family, optimizing function, helping with decision-making and providing opportunities for personal
growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of
care. Palliative care is operationalized through effective management of pain and other distressing
symptoms, while incorporating psychosocial and spiritual care according to patient/family needs,
values, beliefs and culture(s). Evaluation and treatment should be comprehensive and patient-
centered, with a focus on the central role of the family unit in decision-making. Palliative care
affirms life by supporting the patient and family’s goals for the future, including their hopes for cure
or life-prolongation, as well as their hopes for peace and dignity throughout the course of illness,
the dying process and death. It aims to guide and assist the patient and family in making decisions
that enable them to work toward their goals during whatever time they have remaining.”
History: Middle Ages to the 21st Century
Middle Ages
Shelters, or “hospices” were set up by religious orders at crossroads leading to religious shrines
like Santiago de Compostela, Chartres and Rome. These provided help for pilgrims, who were
traveling to these shrines to pray and seek for miraculous cures of chronic and fatal illnesses.
Many would die while on their pilgrimages.
16th-18th Centuries
Religious orders begin to assist in the care to the sick and dying in locally or regionally based
institutions. Most people die at home, cared for by the women in the family.
1800s
Madame Garnier establishes a “calvaire” to care for the dying in Lyon, France. Mother Mary
Aikenhead and the Irish Sisters of Charity open Our Lady’s Hospice in Dublin in 1879, caring only
for dying. In the late 19th Century, there is an increase in municipal or charitably-financed
infirmaries, almshouses and hospitals. Medical knowledge begins to expand.
Early 1900s
The Irish Sisters of Charity begin to care for the sick and dying at St. Joseph’s Hospice in East
London. St. Luke’s Hospice and the Hospice of God in London open to serve the destitute dying.
1935-1990s
The knowledge base and interest in the psychosocial aspects of dying and bereavement were
advanced by the works of Worcester, Bowlby, Lindemann, Hinton, Parkes, Kubler-Ross, Raphael,
Worden, and others.
1960-1970’s
Dr. Saunders establishes the St. Christopher’s Hospice in London in 1967. She emphasized the
multi-disciplinary approach to caring for the dying, the regular use of opioids to control physical
pain, and alleviating the social, spiritual and psychological suffering in patients and families. Many
programs open in the United Kingdom which adapted the St. Christopher’s model to local needs.
New Haven Hospice opens in the United States, and palliative care units were set up in both St
Boniface and Royal Victoria hospitals in Canada in 1974. Programs open across North America.
1980s
Hospice and palliative care further expands throughout Europe and North America. In the U.S.,
Medicare adds a hospice benefit in 1984. Care was also offered for people with advanced AIDS.
Hospice and palliative care programs open in East Asia, and Singapore. Palliative medicine was
recognized as a specialty field in the UK.
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1990s
In 1990 the World Health Organization (WHO) convened an expert committee to spread the
message of pain control and palliative care to an international audience.The principles of hospice
and palliative care become more understood and accepted. More hospice and palliative care
centers are established in the United States, Canada, Australia, New Zealand, and much of Asia
and Western Europe. Training programs in hospice and palliative care are developed.
2000 – Present
More palliative and hospice care specialty training programs are established. Hospice and
Palliative Medicine was formally recognized in the United States as a specialty field in 2006.
Modern Palliative Care Approach (Frager, 1996)

(A) Traditional Approach to Palliative Care. (B) Modern Palliative Care Approach.
The traditional approach initiates appropriate and comprehensive palliative care late in the course
of the patient’s illness. Modern palliative care is provided to the patient and family at the time of
diagnosis of a life-threatening illness, or even earlier- when it is strongly suspected or considered.
Modern palliative care addresses the patient and family’s physical, psychosocial, and spiritual
issues and problems that occur during the entire course of the illness, and after the patient’s death.
Modern Palliative Care Structure of Care Delivery

Modern Palliative Care integrates the fragmented traditional structure of care delivery which
includes: Traditional Supportive Care (provided during active treatment of disease), Traditional
Active Palliative Care (provided when active treatment options are exhausted), Traditional Hospice
Care or Traditional End-of-Life Care (provided during the patient’s final months of life), and
Traditional Bereavement Care (provided to the family after the patient’s death).
Supportive Active Hospice Bereavement

Care PalliativeCare Care Care
Modern Palliative Care Structure of Care Delivery
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Core Outcomes of Palliative Care (NCP, 2004)
1. Care should be coordinated across settings through regular high quality communication during
transitions or when needs change and through effective case management.
2. Control of pain and symptoms, psychosocial distress, spiritual issues, and practical needs
should be addressed with patient and family throughout the care continuum.
3. Patients and families should be prepared for the process of dyingand for death, if anticipated,
with exploration of hospice options, enhancement of personal growth opportunities, and availability
of bereavement support.
4. Patients and families should receive ongoing information to enable full understanding of the
condition and options; values and goals should be elicited; the pros and cons of treatment should
be reassessed regularly; and decisions of care should be sensitive to changes in patient’s
conditions.
Key Elements of Palliative Care (NCP, 2004; NICE, 2001; CHPCA; 2002; Cassel & Foley, 1999)
■ Patient Population: Patients of all ages experiencing a debilitating chronic or life-threatening

illness, condition or injury.
■ Patient-centered and Family-centered Care: The uniqueness of each patient and family is
respected. Both the patient and the family are the units of care. Family members may be
individuals- related or unrelated to the patient- who provide support and with whom the patient has
a significant relationship. The care plan is determined by the goals and preferences of the patient
and family, with support and guidance from the palliative care team. Palliative care requires regular
patient and family assessment, diagnosis, planning, interventions, monitoring and follow-up.
■ Timing of Palliative Care: Palliative care ideally begins at the time of diagnosis of a life-
threatening or debilitating illness and continues through cure, until death, and into bereavement.
■ Comprehensive Integrated Care: Palliative care uses a comprehensive, multidimensional
approach to identify and relieve suffering and improve quality of life through the prevention and
relief of physical, psychological, social and spiritual distress. Palliative care also uses an integrated
and well-coordinated approach, as compared to the traditional fragmented approach which uses
various loosely coordinated specialists to deal with each problem or set of problems separately;
this is much less effective, costly, and potentially harmful- causing more distress and suffering as
intervention/s are implemented with unclear goals and objectives, and more narrow perspectives.
■ Relief of Suffering and Improvement of Quality of Life: The primary goals of palliative care
are to prevent and relieve the distress and suffering caused by the disease and its treatments; and
the improvement of the patient and family’s quality of life.
■ Respect for the Dignity of the Patient and Family: Palliative care respects and upholds the
person’s dignity at the end of life.
■ Communication: Effective communication is important. These include developmentally
appropriate and effective sharing of information, active listening, determination of goals and
preferences, assistance with medical decision-making, and effective communication with all
individuals involved in the care of patients and their families.
■ Terminal and Bereavement Care: Palliative care specialists are knowledgeable about
prognostication, signs and symptoms of imminent death, and skilled on the care and support of
patients and their families before and after death-- including physical, psychological, social, and
spiritual problems and issues, problems and issues during the final hours of life, normal and
complicated grief, and bereavement.
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■ Continuity of Care Across Settings: Palliative care promotes continuity across different health
care settings (hospital, emergency department, nursing home, home care, assisted living facilities,
outpatient and nontraditional environments such as schools). Palliative care specialists collaborate
with professionals and caregivers in these settings, to ensure coordination, communication and
continuity of palliative care across settings.
■ Palliative Care Team: The palliative care team includes the palliative care specialist/s, and
support staff to assist in the integrated comprehensive care of the patient and family. The team
should function efficiently as a unit, under the leadership of the palliative care specialist/s. The
team should be able to meet regularly- several times a week, to ensure a coordinated, efficient and
unified palliative care approach for patients and their families. The team can also include a range of
professionals- based on the services needed and on available resources and manpower. An
efficient and flexible care that is provided by a small well functioning palliative care team is better
than a fragmented and inefficient care that is provided by a larger but poorly coordinated team of
different care specialists and support staff.
The palliative care specialist is also supported by a referral network of specialists to provide
specialized supportive interventions if ever these are needed. These include: pain specialists (for
more aggressive pain procedures and interventions- eg spinal infusions), rehabilitaton specialists,
radiation oncologists (for palliative radiotherapy), surgeons (palliative surgery), medical oncologists
(palliative chemotherapy), psychologists and psychiatrists (intensive interventions for severe
psychosocial pathologies), and others. The palliative care specialist coordinates care with the
patient’s primary care physician, as well as other specialists who are involved in the pateint’s care.
■ Equitable Access: There should be equitable access to palliative care across all ages and
patient populations.
■ Quality Improvement: Palliative care services should be committed to the pursuit of excellence
and high quality of care. Determination of quality requires regular and systematic evaluation of the
processes of care and measurement of outcomes using validated instruments.
Patient Populations (NCP, 2004)
The term life-threatening or debilitating illness encompasses the population of patients of all ages
and a broad range of illnesses, who are living with a persistent condition that adversely affects their
daily functioning or will predictably reduce life expectancy.
This patient population referred to includes:
■ Children and adults with congenital injuries or conditions leading to dependence on life-
sustaining treatments and/or long-term care by others for support of the activities of daily living.
■ Persons of any age with acute, serious and life-threatening illnesses (such as severe trauma,
leukemia or acute stroke), where cure or reversibility is a realistic goal, but the conditions
themselves and their treatments pose significant burdens.
■ Persons living with progressive chronic conditions (such as peripheral vascular disease,
malignancies, chronic renal or liver failure, stroke with significant functional impairment, advanced
heart or lung disease, frailty, neurodegenerative disorders and dementia).
■ Persons living with chronic and life-limiting injuries from accidents or other forms of trauma.
■ Seriously and terminally ill patients (such as persons living with end-stage dementia, terminal
cancer or severe disabling stroke), who are unlikely to recover or stabilize, and for whom intensive
palliative care is the predominant focus and goal of care for the time remaining.
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Forms of Palliative Interventions (Downing et al, 1993)
Active or Disease-Modifying Interventions

Active palliation includes active aggressive interventions that modify the disease. This may include
chemotherapy, hormonal therapy, aggressive antibiotic therapy, radiation therapy, and medications
which are used for symptom relief but also may prolong life. Treatments can be invasive and may
require inpatient care or repeated office visits. Complications are treated aggressively.
Conservative Comfort Interventions
Comfort interventions or “comfort measures” include conservative and relatively non-aggressive
interventions that relieve symptoms instead of modify the disease. Prolongation of life is not the
primary goal but may occur due to symptom relief. Drug therapies include analgesics, anxiolytics,
antiemetics, laxatives, antidepressants, antiinflammatory drugs, and and others. Most care is
provided at home; but some inpatient and/or respite care may be needed. Complications are
usually treated noninvasively.
Urgent Palliative Interventions
Urgent palliation is needed for severe or rapidly worsening discomfort and suffering. The goal is to
relieve symptoms quickly so that the patient does not suffer for any significant amount of time or die
with uncontrolled suffering. Drugs (eg opioids, sedatives, and neuroleptics) may require parenteral
routes. Doses are rapidly titrated to relieve discomfort. Once comfort is achieved, doses are
maintained or gradually reduced to the lowest effective dose. If distressing problems appear near
death, urgent palliation is mandatory; and sedation may even be necessary to achieve relief. Urgent
palliation requires experience, skill, and judgment. It often requires inpatient care but may be
provided at home with continuous supervision and support. Rapid relief of severe suffering is the
intent of urgent palliation, not shortening life.
The Bio-Psycho-Socio-Spiritual Approach to Care
The biopsychosocial and spiritual model organizes and integrates many of the issues and problems
that are addressed by palliative care. Physical, psychological, social, and spiritual issues and
problems can cause suffering, and adversely affect a patient and family’s quality or life and sense of
dignity. The bio-psycho-socio-spiritual framework allows palliative care to truly achieve its primary
goals of relieving suffering, improving quality of life, and preserving dignity.
The Traditional Biopsychosocial Approach (A) is described by an inverted triangle that over-
emphasizes the physical domain of care.
The Modern Palliative Care Approach (B) recognizes the importance of and the interactions
between each domain of care. The improvement of quality of life, preservation of dignity, and the
relief of suffering and distress are achieved by an integrated palliative care approach that involves
physical, psychological, social, existential, and spiritual assessments and interventions.
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The Solo Specialist Model and the Basic Team Model
Palliative care is ideally delivered by a palliative care team. However, a solo palliative care
specialist model may be used in areas and institutions with limited resources, or in areas and
institutions which cannot sustain an integrated palliative care team. The solo palliative care
specialist provides ongoing assessments, recommendations, and care- which are mainly provided
by the solo practitioner. The solo specialist model requires fewer resources to initiate and sustain;
but its main disadvantage is the limited number of cases that can be handled. A basic palliative
care team model is headed by a palliative care specialist, a clinical/ nursing support staff, and a
psychosocial and spiritual support staff. The team model can handle more cases than the solo
specialist model; but its main disadvantage is the added costs and resources needed to initiate and
sustain the team model- especially if resources, reimbursements, and incomes are limited.
Comprehensive Multidimensional Approach of Palliative Care
In order to accomplish its goals, palliative care uses a comprehensive and multidimensional
approach.
Disease Management Management of

Management of Physical Psychological
Problems Problems
Loss, Grief, Management of

Bereavement Patient Social Problems
&
End-of-Life Care
Family Management of
Management of Spiritual Problems
Terminal Phase
Care of Family
Supportive Care Members, Counseling
Planning and Caregivers & Decision Making
Delivery Family Unit
Multidimensional Assessment in Palliative Care

Multidimensional assessment (MDA) starts with a good history. Start with a concise summary of
the patient’s illness, followed by a physical assessment. The psychological assessment smoothly
transitions into assessment of decision making capacity, followed by communication and
information sharing preferences. Assessment of goals, preferences and decision making follows.
Then a social and family assessment is done. Spiritual assessment follows. Finally, assessment of
practical aspects of support and care services is done, followed by anticipatory planning for death.
All dimensions should be assessed adequately. Based on the MDA, the palliative care specialist
formulates a case conceptualization. The case conceptualization helps in prioritizing the issues and
in developing a management plan.
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The Dimensions of a Multidimensional Assessment (MDA) are:
1. Disease Assessment:
primary diagnosis, secondary concurrent disease/s, status of disease/s (new diagnosis, recurrent,
progressive, remission, terminal), stage of disease/illness; smoking/ alcohol/ substance abuse; test
results (summary, significance, future options), treatment (summary, impact, future options: risk vs
benefit, pros vs cons); prognosis
2. Physical Assessment:
physical symptoms, physical function and impairments, physical examination, nutritional status,
and other physical concers and problems
3. Psychological Assessment:
cognitive ability / impairment, delirium, dementia; emotional responses to illness, anxiety, anger,
depression; suicidal ideation; fears and concerns, loss of control, burden, abandonment, sense of
dignity, isolation, unresolved issues; motivation; perception of illness and quality of life; current
coping/ adaptive responses to illness (coping problems, maladaptive responses), coping patterns
with previous stressful events
4. Decision Making Assessment:
capacity / competence; goals of care, preferences, advance care planning, informed consent, living
will, estate planning; durable power of attorney for health care (medical power of attorney or health
care proxy), surrogate, guardianship for dependent children; resuscitation status: inpatient and
outpatient or community Do Not Resuscitate (DNR) orders, end-of-life care preferences (e.g., use
of inotropes (dopamine, norepinephrine, etc), antibiotics, dialysis, transfusion, sedation for
refractory symptoms, enteral or parenteral nutrition).
5. Communication and Information Needs Assessment:
educational level, primary language; Is there someone to share fears with? Talk to? Plan with? Is
the information clear and well understood? Misconceptions? What the patient/family knows and
wants to know? Who else to talk to- other providers, team members? Confidentiality,
Communication problems and concerns, Is language an issue? How to communicate with and
what to tell the children?
6. Social Assessment:
If employed: employment history, can employment to accommodate patient?; If a student:
education and schooling history, can school to accommodate patient?; financial and insurance
coverage
--- Suport Systems: available support systems (nuclear and extended family, friends, community,
and spiritual networks); knowledge, skills, strengths, and weaknesses of these systems and
individuals within them; and the ability to access these systems
--- Community: resources, beliefs, values, support, culture; health and safety issues, water supply,
pollution
7. Family Assessment:
comprehensive assessment of individual family members (adults and children) and family
caregivers; family unit/ family system: family structure, function, stability, resources, cohesion,
family life cycle position; communication patterns within the family and with the care team;
motivation, beliefs, values, spirituality, culture; perception of illness and quality of life; fears and
concerns; coping/ adaptive mechanisms, coping patterns with past stressful events and crisis
management; Family history (medical and psychiatric illnesses; health behaviors: alcohol abuse,
drug abuse, history of physical abuse, history of sexual abuse, smoking).
8. Spiritual Assessment:
spiritual and/or existential beliefs, religious/spiritual life; spiritual and/or existential distress and
issues: meaning (life, illness, death), values, control, independence, dignity, faith; religious
affiliation and level of importance, religious beliefs and practices, support from religious community;
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needs/wants visit from priest/pastor/spiritual caregiver or counselor? needs/wants certain religious
rituals/sacraments/practices done?
9. Support and Care Needs Assessment:
hospice and palliative care delivery options including community/home care; support system ability
to provide physical assistance when needed (transfers, wound care, bladder/bowel care, and
lifting); caregivers, support system for primary caregiver/s, including: availability of other people
who can share the burden of care, respite care, medical/psychosocial/spiritual-existential care for
caregivers; Knwledge and skills of family and caregiver/s; domestic needs, financial assessment:
cost of care; transportation availability; home assessment, home care equipment and needs, safety
check, need for home modification, accessibility of home for patient and medical equipment,
handicap access to home
10. End-of-Life and Terminal Care Needs Assessment:
unresolved issues, projects, last wishes, current losses, anticipated losses; acceptance and
preparedness of patient and family for death; advance care planning, care needs and preferences
during the last hours, organ donor, advance planning/ preferences after death (wake, funeral,
burial, others); bereavement support needs
Process of Developing a Management Plan
• Do an Initial Multidimensional Assessment (MDA)

• Develop a Case Assessment or Case Formulation
The case formulation summarizes and integrates relevant issues from the MDA. It is an
integrated description of the way in which various factors, issues and problems have interacted
and contributed to the current status of the patient and the family. In particular, it is a description
of the way these factors, issues and problems have interacted and contributed to the patient
and the family’s suffering, quality of life, and sense of dignity. A biopsychosocio-spiritual
approach is used to develop an accurate case formulation.
Because it is impossible to determine all the details about the case, the case formulation is
always never complete and perfect. During the course of the patient and the family’s care, any
new information that is obtained is used by the palliative care specialist to modify and improve
his/her case formulation. Because the patient and family’s status and response to the patient’s
illness changes over time, the case formulation should also be modified and changed over time.
• Determine the Hierarchy of Issues and Problems
Based on the case formulation, the relative importance of each issue and problem are
determined. Issues and problems are prioritized; and this hierarchy of issues and problems are
used in developing an appropriate management plan for the patient and the family.
• Determine Management Goals and Objectives
Goals indicate what the specialist aims to achieve for the patient and family. A goal is a problem
or issue preceeded by a verb or action phrase (eg “reduce the frequency/ intensity of,”
“eliminate,” “alleviate,” “stabilize”); or a positive factor or issue preceeded by a verb or action
phrase (eg “increase the intensity/ frequency of,” “facilitate,” “enhance,” “augment”).
Objectives indicate what the patient and/or the family will be able to do, exhibit, or achieve as a
result of the management intervention/s. Compared to goals which are more general, objectives
are specific enough to be used to describe an endpoint, as well as to monitor the response to
management interventions. For example, the goal “Alleviate insomnia” may have the objective
“The patient will be able to sleep at least 6 hours every night.”
• Determine the Contexts of Management Planning
Considerations include: goals of care; patient and family’s preferences; severity of illness,
issues and problems; availability of resources (eg clinical, manpower, time, financial); time
9
limitations, prognosis and life expectancy; willingness, cooperation, and compliance of the
patient and/or the family; limitations in terms of the patient and/or family’s abilities to participate;
developmental level of the child/children; costs and burden of interventions; likelihood of
success or failure of various interventions; and others.
• Develop and Implement a Care Plan or Management Plan
The management plan is also multidimensional in its approach. The plan is based on the goals,
objectives, and the contexts of management planning. Based on the contexts of management
planning, the specialist decides on one or more therapies and interventions for each goal. It is
usually helpful to set a target time for goals and objectives- especially when managing patients
limited life expectancies and their families.
• Monitor, Modify, and Revise the Management Plan
Based on the objectives, the management plan’s effectiveness and the patient and/or family’s
progress are regularly re-evaluated, modified and improved by the palliative care specialist
during the entire course of the patient and the family’s care. The patient and family’s progress
can be assessed by a combination of objective, subjective, quantitative, or qualitative tests and
measures (eg rating scales, observations, clinical parameters, laboratory tests, questionnaires,
and other methods). When there is poor or no response, when the patient and/or family’s
condition or status changes/ worsens, or when complications or adverse reactions occur, the
specialist needs to decide (with the patient/ family) on changes and revisions that are needed—
No changes? Change or modify goals? Objectives? Interventions?
• Transition to the Next Phase of Management
Once the objectives are achieved, the specialist moves on to the next phase of management, or
proceeds to transition the care back to the primary care or family physician.
Process of Providing Palliative Care During Sequential Encounters
The process of providing palliative care involves sequential physician-patient/family encounters.

The process initially involves both the patient and the family; it is repeated regularly during
sequential encounters; and continues to involve the family after the patient’s death. The process
ends when palliative care services are no longer needed by the family.
Intake Ongoing Care Discharge

Assessment Re-Assessment Final Assessment
Communication Communication Communication
Information- Information- Information-
Sharing Sharing Sharing
Decision Making Decision Making Decision Making
Care Planning Care Planning Discharge Care
Care Delivery Care Delivery Planning
Patient & Family DEATH Family
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Quality of Life
Palliative medicine aims to achieve the best quality of life for patients and their families. Quality of
life (QOL) is complex and difficult to define and assess. It is both individual and multidimensional.
QOL in palliative medicine is based on the concept of health; and thus, it is related to physical,
psychological, social, existential and spiritual well being. This multidimensional health oriented
concept is called the health related quality of life (HRQOL). QOL is dynamic; it changes as the
disease progresses and as patients adjust to changes. Regular QOL assessments should be done
during the course of illness.
Quality of Life Assessment Instruments
Although QOL instruments exist, assessment remains difficult. Generic instruments (such as the
Medical Outcomes Study Short Form 36, and the WHO Quality of Life) can be applied to anyone
including those in good health. They are used to compare diseases or measure disease related
impairment. Patients are compared with data that is usually derived from the general population.
Disease specific instruments have items relevant to the condition being studied. Examples
include cancer specific instruments such as the EORTC QOL-C30 (European Organization for
Reasearch and Treatment of Cancer), and the FACT-G (Functional Assessment of Cancer-
General Version). They are more sensitive to change and can be used to measure outcomes and
evaluate the effects of treatment or other interventions. Domain specific instruments can provide
more sensitive assessments for specific symptoms such as pain, depression, anxiety. Many
HRQOL instruments only include the physical, psychological, and social domain; and are too
narrow for palliative care. In addition to these domains, palliative care specific QOL instruments
attempt to include spirituality, loss/grief, family support, and coping. Examples include the McGill
QOL and Life Evaluation questionnaires, Missoula Vitas QOL index, McMaster QOL Scale, and the
Quality at the End of Life Instrument.
Quality of Life Assessment Instruments should be:
Multidimensional: They must measure all aspects and dimensions of QOL that may be affected
by a life-limiting illness. Use either several limited-dimensional instruments or one multidimensional
instrument that measures all aspects of quality of life. Taken together, the results of a group of
limited-dimensional tools that measure selected aspects of QOL may describe the overall QOL.
Subjective: Instruments should provide subjective data that is ideally obtained via self-report of
patients, if possible. Sometimes, however, assessments of quality of life can only be based on
reports of family or caregivers. Family and caregivers may not always be accurate. A good way to
evaluate QOL is to use a self-report measure that combines a structured interview, subjective
rating scales, and objective rating of physical, behavioral and psychosocial functioning.
Useful in the settings in which they will be used: Readability, understandability, and length of
the instrument are important considerations in QOL measures. Patients unable to read and
understand well may provide unreliable scores to instruments written at a higher level. Patients
may be fatigued or in pain so that their concentration on a long instrument may be compromised.
Valid: Validity is the ability to measure what is supposed to be measured. Content-related validity
is the extent to which the items cover a representative sample of the measured domain; criterion-
related validity is the extent to which the results agree with direct and independent measure/s of
what is supposed to be measured; and construct-related validity is the capacity to meaure a
theoretical construct on which the instrument was based (correlations with other tests, statistical
measures of internal consistency, and factor analysis). The palliative care specific QOL
instruments have been developed or studied in palliative care situations. A QOL instrument that
11
was developed for the general population may not address aspects of QOL that are most relevant
to persons with incurable disease.
Reliable: Reliability is the reproducibility of results within acceptable limits of agreement; related to
accuracy or consistency of measurement. An instrument may measure what it was intended to
measure, but it may do so in a less dependable way so that the scores vary randomly. Test-Retest
Reliability is reliability over time (with retests); Interrater Reliability is reliability across different
examiners. When scores are unreliable, the score may not accurately represent QOL.
Standardized: Standardization is the pretesting on a large, demographically representative sample
of people. This allows for the comparison of the individual results with an appropriate
standardization group.
McGill Quality-of-Life Questionnaire (MQOL) (Cohen et al, 1995)

Over the past 2 days,
1. One troublesome symptom is _________________________.
0 1 2 3 4 5 6 7 8 9 10
No problem Tremendous problem
2. Another troublesome symptom is ______________________.
0 1 2 3 4 5 6 7 8 9 10
3. A third troublesome symptom is _______________________.
0 1 2 3 4 5 6 7 8 9 10
4. Physically, I felt ____________________________________.
0 1 2 3 4 5 6 7 8 9 10
Terrible Well
5. I was depressed.
0 1 2 3 4 5 6 7 8 9 10
Not at all Extremely
6. I was nervous or worried.
0 1 2 3 4 5 6 7 8 9 10
7. How much of the time did you feel sad?
0 1 2 3 4 5 6 7 8 9 10
Never Always
8. When I think about the future, I am _____________________.
0 1 2 3 4 5 6 7 8 9 10
Not afraid Constantly terrified
9. My personal existence is _____________________________.
0 1 2 3 4 5 6 7 8 9 10
Utterly meaningless Very purposeful
and without purpose and meaningful
10. In achieving my life goals, I have ______________________.
0 1 2 3 4 5 6 7 8 9 10
Made no progress Progressed to
whatsoever complete fulfillment
11. My life to this point has been _________________________.
0 1 2 3 4 5 6 7 8 9 10
Completely Very worthwhile
worthless
12. I have ___________________________________________.
0 1 2 3 4 5 6 7 8 9 10
No control over my life Complete control over my life
13. I feel good about myself as a person.
0 1 2 3 4 5 6 7 8 9 10
Completely disagree Completely agree
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14. To me, everyday seems to be _______________________.
0 1 2 3 4 5 6 7 8 9 10
A burden A gift
15. The world is _____________________________________.
0 1 2 3 4 5 6 7 8 9 10
An impersonal, Caring and responsive
unfeeling place to my needs
16. I feel supported.
0 1 2 3 4 5 6 7 8 9 10
Measuring the Quality of Life of Seriously Ill Patients

Quality at the End-Of-Life (QUAL-E) Instrument (Tulsky et al, 2002)
I’d like you to think back over the last month. Please tell me the three physical symptoms or
problems that have bothered you the most during that time. Some examples are pain,
nauses, lack of energy, confusion, depression, anxiety, and shortness of breath.
Symptom #1 ___________________ Symptom #2 ___________________

Symptom #3 ___________________
If no symptoms were elicited, then state the following: “So just to be sure, over the last mont, you
have had no physical or emotional symptoms that bothered you.”
If correctm skip to question #5.
Which of these symptoms or problems has bothered you the most this past week?
1. During the last week, how often have you experienced _______________?
Rarely (1) A few times (2) Fairly often (3) Very often (4) Most of the time (5)
2. During the last week, on average, how severe has _______________?
Very mild (1) Mild (2) Moderate (3) Severe (4) Very severe (5)
3. During the last wek, how much has _______________ interfered with your abilioty to enjoy your
life ?
Not at all (1) A little bit (2) A moderate amount (3) Quite a bit (4) Completely (5)
4. How worried are you about _______________ occurring in the future?
5. In general, how important are your physical symptoms or problems to your over-all quality of
life?
Below is a list of stetments that other people with a serious illness have said may be
important. Please tell me how true each statement is for you.
6. I have as muc information as I want about my illness.
7. Although I cannot control certain aspects of my illness, I have a sense of control about my
treatment decisions.
8. I participate as much as I want in the decisions about my care.
9. Beyond my illness, my doctor has a sense of who I am as a person.
10. In general, I know what to expect about the course of my illness.
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11. As my illness progresses, I know where to go to get answers to my questions.
12. In general, how important is feeling like an active parttcipant in your health care to your overall
quality of life?
13. I spend as much time as I want with my family.
14. There is someone in my life with whom I can share my deepest thoughts.
15. In general, how important are your personal relationships to your quality of life?
16. In general, how important is feeling connected to others to your over-all quality of life?
17. Thoughts of dying frighten me.
18. I worry that my family is not prepared to cope with the future.
19. I have regets about the way I lived my life.
20. At times, I worry that I will be a burden to my family.
21. I worry about the financial strain caused by my illness.
22. In general, how important are concerns about the future to your overall quality of life?
23. I have been able to say important things to those close to me.
24. I make a positive difference in the lives of others.
25. I have been able to help others through time together, gifts, or wisdom.
26. I have been able to share important things with my family.
27. Despite my illness, I have a sense of meaning in my life.
28. I feel at peace.
29. In general, how important is contributing to others to your overall quality of life?
30. In general, how important is the feeling that your life is complete to your overall quality of life?
Now, I have one last question.

31. How would you rate your overall quality of life?
Very poor (1) Poor (2) Fair (3) Good (4) Excellent (5)
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Problems and Needs in Palliative Care Questionnaire (Osse et al, 2004)
The PNPC asks 2 questions at each item:

1 Is this (item) a problem? Yes— Somewhat— No
2 Do you want (professional) attention for this (item)? Yes, more – As much as now – No
Quality-of-Life Aspects
Activities of Daily Living and Instrumental Activities of Daily Living: 7 Items
1. Difficulties in body care, washing, dressing, or use of the toilet.
2. Difficulties in rising, walking, climbing stairs.
3. Difficulties in preparing meals or cooking.
4. Difficulties in shopping (food, clothes etc.).
5. Difficulties in personal transportation (cycling, driving a car, using public transportation etc.).
6. Difficulties in doing light housework (tidying up, etc.).
7. Difficulties in doing heavy housework (cleaning, making beds, gardening etc.).
Physical Symptoms: 18 items
1. Pain
2. Difficulty in concentration
3. Fatigue
4. Sleeping problems
5. Nausea or vomiting
6. Constipation or diarrhea
7. Incontinence
8. Mouth problems or swallowing problems
9. Lack of appetite or change of taste
10. Shortness of breath
11. Cough
12. Itch
13. Loss of hair
14. Impaired vision or hearing
15. Sexual dysfunction
16. Prickling or numb sensation
17. Swelling of arms, legs or abdomen (Edema)
18. (Nightly) sweating or hot flushes
19. Wounds or pressure sores
20. Problems with a stoma, tubes and appliances
Role Activities: 4 Items
1. Difficulty in filling the day.
2. Difficulty in relaxing.
3. Difficulties in employment or following a study.
4. Difficulties in caring for children or babysitting.
Financial and Administrative Issues: 5 Items
1. Extra expenditure because of the disease.
2. Reduced income because of the disease.
3. Difficulties in making arrangements (last will and testament, insurance etc.).
4. Difficulties in filling in forms.
5. Difficulties in making my life companion acquainted with financial and administrative issues.
15
Social Issues: 15 Items
1. Problems in the relationship with life companion.
2. Difficulties in talking about the disease with life companion.
3. Problems in the contact with (one of) the children.
4. Problems in the contact with family, friends, neighbors or colleagues.
5. Finding it difficult to talk about the disease, because of not wanting to burden others.
6. Finding others not receptive to talking about the disease.
7. Difference of opinion what treatments should be used.
8. Experiencing too little support by others.
9. Difficulties in finding someone to talk to (confidant).
10. Receiving too little practical help from life companion, or from the family.
11. Others being over-concerned.
12. Others dramatizing the situation.
13. Others denying the severity of the situation.
14. Loneliness.
15. Being forsaken by others.
Psychological Issues: 15 Items
1. Depressed mood.
2. Not experiencing pleasure anymore.
3. Fear for physical suffering.
4. Fear of treatments.
5. Fear of metastases.
6. Fear of being alone.
7. Fear of death
8. Difficulty coping with the unpredictability of the future.
9. Difficulties in showing emotions.
10. Feelings of guilt.
11. Feelings of shame.
12. Loss of control over emotions.
13. Difficulties to accept a changed bodily appearance.
14. Difficulties to See positive aspects of the situation.
15. Being overwhelmed by all decisions that have to be made.
Spiritual Issues: 5 Items
1. Difficulties to be engaged usefully.
2. Finding it hard to be available to others.
3. Difficulties in keeping confidence in God or religion.
4. Difficulties concerning the meaning of death
5. Difficulties in accepting the disease.
Autonomy: 9 Items
1. Difficulties in continuing the usual activities.
2. Difficulties in continuing social activities.
3. Difficulty in handing over tasks of another person because one is no longer able to perform
former tasks.
4. Being dependent on others
5. Frustrations because one can do less than before.
6. Experiencing loss of control over one's own body.
7. Experiencing loss of control over one's life.
8. Experiencing difficulties in asking for help.
16
9. Experiencing difficulties in making one's own decisions.
Informational Needs: 9 Items (only addressed yes/no)
1. Information about aid (such as wigs, prosthesis, alarm devices, parking permits for the disabled,
special beds, adaptations to the home, etc.).
2. Information about places and agencies that provide help (and aids).
3. Information about the cause of cancer.
4. Information about possibilities of treatment and the side effects.
5. Information about physical symptoms that can be expected.
6. Information about alternative healing methods.
7. Information about euthanasia.
8. Information about nourishment.
9. Information about the sexuality of people with cancer.
Quality-of-Care Aspects:
Problems in Consultations: 3 Items
1. Experiencing difficulties in expressing disagreement.
2. Experiencing difficulties in saying one doesn't understand.
3. Experiencing difficulties in remembering what was said.
Overriding Problems in Quality of Care: 9 Items
1. The possibility to choose another care provider.
2. Insufficient adjustment of hospital care to the home situation.
3. Difficulties fine-tuning the care of different professionals.
4. Difficulties in getting access to help from agencies/professional organizations.
5. Too slow professional reaction on an acute change in situation.
6. The insecurity of the availability of a hospital bed if needed (acutely).
7. Too many caregivers around me in my house.
8. Difficulties in getting a second opinion from another doctor.
9. Lack of information in writing (inability to reread information).
Concerning the Family Physician: 20 Items
Do you want his/her attention for this? Yes, more – As much as now – No
1. That the FP has knowledge of treatment possibilities.
2. That the FP discusses things that went wrong in the past.
3. That the FP announces a house visit in advance.
4. That the FP comes to check if I am alright.
5. That the FP visits me in the hospital.
6. That the FP takes the time to discuss some issues.
7. That the FP takes the initiative to visit me.
8. That the FP shows his interest in me as a person.
9. That the FP listens well to what I have to say.
10. That the FP supports me if I want something different from what he proposes.
11. That the FP helps me when I have to make difficult decisions.
12. That the FP discusses what I want, and what I can expect from him in the future.
13. That the FP provides intelligible information on own initiative.
14. That the FP is honest and open about my situation.
15. That the FP supports me when I am having hard times.
16. That the FP involves my family in the care.
17. That the FP has more attention for the personal needs of my family.
18. That the FP arranges that I can speak to him personally if something happens.
17
19. That the FP confers with the medical specialists.
20. That the FP informs other care providers (e.g., by using a common medical file).
Concerning the Specialist/ Specialists: 19 Items
Do you want his/her attention for this? Yes, more– As much as now – No
1. That the specialist discusses things that went wrong in the past.
2. That the specialist takes care that I don't have to undergo unnecessary procedures.
3. That the specialist lets me shuttle to the hospital less often.
4. That the specialist looks after me when the treatment threatens to become too much for me.
5. That the specialist ensures enough privacy during a consultation or medical investigation.
6. That the specialist arranges the appointments so that I don't have to wait so long.
7. That the specialist takes ample time to discuss a few matters.
8. That the specialist shows me his/her interest in me as a person.
9. That the specialist also supports me if I want something different from what he proposes.
10. That the specialist helps me to make difficult decisions.
11. That the specialist discusses with me what I want, and what I can expect from him/her in the
future.
12. That the specialist tells me honestly and openly how my situation is.
13. That the specialist explains honestly things in simple words.
14. That the specialist supports me when I am having hard times.
15. That the specialist involves my family in the care.
16. That the specialist has more attention for the personal needs of my family.
17. That I don't have to speak with another specialist at control consultations.
18. That the specialist keeps my FP informed.
19. That the specialist arranges a good follow-up after I get bad news.
Suffering and Distress
Palliative medicine aims to alleviate the patient and family’s distress and suffering. The concept of
suffering is complex. Cassell defined suffering as “a state of severe distress associated with events
that threaten the intactness of a person (Cassell, 1991).” Distress, such as pain, does not necessarily
cause suffering. Pain and suffering are not synonymous. Gunderman suggested that it is not
distress, such as pain, that causes suffering, but distress without meaning to the sufferer
(Gunderman, 2002). Mothers can look at the pain of giving birth as a positive experience and not look
at it as a form of suffering; but patients who experience cancer pain can fail to see any meaning or
reason for their cancer and pain, and consider the experience as suffering. Based on clinical
studies on palliative care patients, Cherny et al proposed a new definition of suffering (Cherny et al,
1994). According to Cherny, suffering is an aversive experience characterized by the perception of
distress that is caused by adverse factors that undermine the quality of life.
Some Sources of Distress and Suffering of the Patient

• Physical problems (eg pain, fatigue, nausea, constipation)
• Psychosocial problems (eg anxiety, depression, coping and adjustment problems)
• Family problems (eg dysfunction, instability, conflicts between family members, inability to work
cohesively)
• Burdens of medical interventions: physical, psychological, social, spiritual, financial burdens
• Spiritual and existential problems
• Empathic suffering with the family
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Some Sources of Distress and Suffering of the Family
• Individual problems of family members (eg illnesses; physical, psychosocial, and spiritual
problems)
• Family problems (eg dysfunction, instability, conflicts between family members, inability to work
cohesively)
• Burdens of caring for the patient (eg physical, psychological, social, spiritual, financial burdens)
• Loss and Bereavement (eg coping, adaptation, changes in daily routines, anticipation of death,
role changes)
• Personal conflicts of family members (eg duty to care for loved one vs duty to care for self)
• Empathic suffering with the patient
Dignity
Palliative medicine aims to promote the patient and the family’s sense of dignity. Dignity is difficult
to define. People may have different views about dignity. It is also dynamic; one’s sense of dignity
can change during the course of illness. The best way to understand a patient’s sense of dignity is
to ask the patient what dignity means to him/her, what factors enhance his/her sense of dignity,
and what factors are important for him/her in regards to dying with dignity.
Dignity Conserving Care Approach in Palliative Medicine (Chochinov et al, 2002)
Illness Related Concerns Dignity

Conserving DIGNITY
Repertoire
Social Dignity Inventory
Categories, Themes, and Sub-themes (Q: Sample Question, Tx: Sample Intervention/s)
Illness-Related Concerns (physical and psychological domain)
Symptom Distress
• Physical distress: Q: “Is there anything we can do to make you more comfortable?” Tx:
appropriate symptom management, comfort care, and frequent assessment
• Psychological distress: Q: “How are you with what is happening?” Tx: empathy, counseling,
psychosocial support and interventions
• Medical uncertainty: Q: “Is there anything more that you would like to know?” Tx: education
• Death anxiety: Q: “Are there things about the latter stages of your illness that you want to
discuss?” Tx: education and counseling
Level of Independence
• Independence: Q: “Has your illness made you more dependent on others?” Tx: promote
independence and autonomy
• Cognitive acuity: Q: “Are you having difficulty with your thinking?” Tx: Treat reversible causes
• Functional capacity: Q: “How much are you able to do yourself?” Tx: physiotherapy, assitive
devices and methods
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Dignity Conserving Repertoire (psychosocial and spiritual domain)
Dignity Conserving Perspectives

• Continuity of self: Q: “Are there things about you that are not affected by your physical
limitations? What is it about your life that you value the most?” Tx: Acknowledge those aspects
of the patient’s life that he/she values most
• Role perseveration: Q: “What are the things that you did which are important to you?” Tx:
respect, promote self esteem, independence
• Maintenance of pride: Q: “What aspects of yourself, and about your life, are you proud of?” Tx:
respect, promote self-esteem
• Hopefulness: Q: “What are the things that you can still do?” Tx: encourage and enable
meaningful activities
• Autonomy and control: Q: “How in control do you feel?” Tx: promote autonomy, involve in care
and decisions
• Generativity and legacy: Q: “How do you want to be remembered?” Tx: life album, journal
• Acceptance: Q: “How at peace are you with what is happening now?” Tx: psychosocial support
• Resilience and fighting spirit: Q: “What part of you is strong?” Tx: enhance sense of well being
Dignity Conserving Practices

• Living in the moment: Q: “What things offer you comfort?” “What takes your mind off concerns
about your physical limitations?” Tx: activities and projects, relaxation, massage
• Maintaining normalcy: Q: “Is there a sense of normalcy in your life?” Tx: normal daily routines
• Finding spiritual comfort: Q: “Is there a religious or spiritual that you are part of?” Tx: refer to
chaplain or pastoral care worker, enable participation in spiritual or religious practices
Social Dignity Inventory (psychosocial domain)
• Privacy boundaries: Q: “What is it about your privacy that are important to you?” Tx: respect
privacy, always ask patient’s permission when appropriate, proper draping
• Social support: Q: “Who are the people that are most important to you?” Tx: allow visitation,
involve the patient’s support network
• Care tenor: Q: “Is there anything in the way that you are treated that undermines your sense of
dignity?” Tx: treat with respect
• Burden to others: Q: “Do you worry about being a burden to others? If so, in what ways?” Tx:
discuss these concerns with patient, family and caregivers
• Aftermath concerns: Q: “What are your concerns for the people you will leave behind?” Tx:
encourage resident and family to prepare, advance care planning, making a will
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The Family
Palliative care is both patient-centered and family-centered. A family can be viewed as a unit of
care that includes people who are closest to the patient in terms of knowledge, care, and affection.
It is composed of people who are related to the patient biologically, legally, or socially. In practice,
the physician should determine who constitutes the family, with the help of the patient and those
who are closest to him/her. The family is both the center of care, and an important part of the
patient’s care team. Family problems and issues can cause significant distress and suffering in
each family member- including the patient. The patient’s problems and issues can cause significant
distress and suffering in individual family members, and also affect the family unit as a whole. The
physical, psychological, social, economic, and spiritual impact on family members can be very
significant. In general, the care and support needs of family members, and the family unit/ family
system, increases as the patient’s illness progresses.
Care
and
Support Patient
Needs Family
Time Death
Family Assessment
Family assessment should provide sufficient information to adequately characterize the family in
terms of its Demographics, History, Structure, Communication, Belief System, and Regulatory
Functioning.
Demographics
Names and ages of members, occupations, current composition of family/ household/ extended
family/ social family, health status of members (medical problems, mental health problems, alcohol/
drug problems, etc); family caregivers
Family Caregivers (Hauser and Kramer, 2004)
• Family caregivers are family members who provide caregiving which includes both formal and
informal care that is beyond the customary support provided by and normally expected of family
members. Family caregivers are usually involved in helping the patient with daily activities and
personal care; in goal setting, decision making, and management planning; and in carrying out
the management plans, especially at home.
• For an adult married patient, the primary family caregiver is usually the spouse. For a child, it is
usually one or both parents. However, the primary family caregiver can also be a child’s
21
grandparent, an adult patient’s parent, an adult child, sibling, or other family members, distant
relatives and close friends.
• Palliative care of the family includes the care of family members, in addition to the care of the
family unit. Palliative care aims to reduce the distress and suffering, improve the quality of life,
and reduce the morbidity and mortality of family members- especially the family caregivers.
Palliative care relieves the physical, psychological, social, and spiritual burden associated with
caregiving.
• Primary stressors of family caregivers include stressful caregiving roles and tasks to address
the patient’s care needs (eg help with daily activities, personal care, medical care, household
maintenance, transportation, and others). Secondary stressors are stressful problems and
conflicts that the family caregiver may experience in their life as a result of caregiving (eg family
conflicts and problems, work-related problems and conflicts; and the financial and non-financial
burden and costs of caregiving.
• Caregiving roles and tasks, and caregiving-related stressors and problems will vary during the
course of the patient’s illness. The physical, psychological, social, economic, and spiritual
impact of caregiving can be very significant. In general, the care and support needs of family
members, and especially the family caregiver/s, increases as the patient’s illness progresses.
History as a Unit
“What is the family’s developmental stage (eg first child, young children, adolescents, launching of
young adults, etc); how has it managed each previous stage? What were the previous challenges
faced; how did it respond (adaptive or maladaptive)? What is the effect of its socioeconomic
status? What is the effect of its cultural and religious beliefs? Isolated from the community? Any
specific events which are significant? Current themes and challenges?”
Structure
Family Structure is the organizational and relationship patterns and hierarchies between family
members.
Components of Family Structure
• Adaptability: A healthy structure should have a flexible structure is stable, but can change and
adapt to situations if needed.
Problem: Too chaotic (roles and patterns always changing), or too rigid (unable to change and
adapt when needed).
“How have the family roles adapted to past challenges? Have members supported each other?
Cooperated to find a solution? What are the family rules? Are the rules clear to all members?
What is the system for rewards, and punishment/ discipline?”
• Cohesion: A healthy structure should have a balance between connectedness and
separateness.
Problem: Too emotionally close (Enmeshment), or too emotionally distant (Disengagement).
“How do members express their individuality? Do members get distressed by it? When a
member experiences a loss or failure, is the family supportive of neglectful? How much are
members concerned by each other’s welfare?”
• Boundaries and Subsystems: A healthystructure has emotional boundaries between
members and subgroups (subsystems) that are clear but permeable.
Problem: Boundaries are too rigid, too diffuse, or misaligned
“What are the family subsystems? Are they stable over time? Are ther boundary violations
(parentified child, sexual abuse, cross generational coalitions)? Who has the authority? Who
makes decisions and how are they implemented? Who follows? Are roles clear and
complementary? What is the boundary with the extended family? With the community? Is there
support, inclusion, exclusion, isolation?”
22
Communication
Family Communication is the verbal and behavioral communication between members about their
needs, and their perceptions of, and feelings about each other.
Components of Family Communication
• Clarity: Healthy communication is clear, direct, and consistent. Affective response is congruent
and appropriate.
Problem: Communication is ambiguous, indirect. Affective response is muted, incongruent, or
inappropriate.
“Are the concerns expressed clearly and directly? Is the affective response appropriate?”
• Emotional Expression: Healthy communication has affect that is congruent to the message.
Problem: Expression of feelings are blocked, and affect is not congruent to the message.
“What is the family’s emotional expression (warm vs hostile, supportive vs critical)? Are the
emotional expression congruent with the issues (eg angry about a perceived wrong, sad about
a loss)? Are members sensitive about each other’s emotions? Is the expression of emotion
allowed?”
• Problem Solving: Healthy communication identifies existing problems, emphasizes positive
interaction, resolves differences and conflicts, and allows for adaptation based on new
information.
Problem: Too many perceptions of a problem, unable to resolve differences and conflicts,
unable to facilitate coping and adaptation.
“How did the family solve past problems? Are some members more active in problem solving?
Who makes decisions? I everyone’s input considered? What are each member’s role in
problem solving? Too much or too little role for some members? Is there enmeshment of
disengagement during problem solving?”
Belief System
Family Belief Systems are shared ideas and beliefs that guide family decisions and actions, and
contribute to patterns of interactions in the family.
Healthy family beliefs promote family continuity and adaptation.
Problem: Beliefs that cause family maladaptation.
“Are there recurring themes in family life across generations? Clusters of related problems (abuse,
misconduct, problems with the law)? Unquestioned beliefs and perceptions (eg all men are
abusive, teenagers are promiscuous)? Are roles based on family beliefs? Are there problematic
patterns of interaction which also exists in previous generations?”
Regulatory Functioning
Family Rules and Regulations control the behaviors of each family member and their interactions.
Control can be excessive (overregulation), lacking (underregulation), inappropriate, inconsistent, or
chaotic.
Regulation of the Children’s Development
Rules and regulations provide for the developmental needs of the children, and helps in the
mastery of developmental tasks, in order to promote the development of autonomy.
Problem: Excessive response to the child’s needs that greatly limits autonomy (Overregulation),
deficient response that does not nurture development (Underregulation), response is not
appropriate for the child’s developmental stage (Inappropriate regulation), response is consistent in
one domain (eg sleeping) but inconsistent in another (Irregular regulation), or no pattern of
response (Chaotic regulation).
“How does the family nurture and support? Does it set limits and teach self control? Does it foster
socialization? Does it faciliotate achievement and success? Does it promote independence? Are
23
the parents regulatory patterns coordinated, or contrasting (eg one is overregulatory, the other is
underregulatoy)?
Patterns of Interactions
The repetitive patterns of interactions in the family system are habitual ways in which family
members behave with one another. These patterns of interactions can have positive or negative
effects on the family and/or its members. Interventions may be needed to correct problematic
patterns of interactions, and/or augment helpful patterns of interactions.
Specific Tools and Methods for Family Assessment

• Family Genogram: A diagram which identifies facts and relationship patterns of 3 or more
generations of family members. It helps in the evaluation of family structure and function. It can
also be used to help the family understand its own issues and problems. The genogram should
be kept in the chart and updated as new information is obtained.
• Family Timeline: A diagram that maps a sequence of important events.
• Family APGAR: Assess 5 levels of family function – emotional support, family communication,
independence/ initiative, sharing feelings, and shared family time. Each level is scored from 0
(almost never), 1 (some of the time), and 2 (almost always). Scores are totaled: 7-10 (highly
functional), 4-6 (moderately dysfunctional), and 0-3 (highly dysfunctional). Low scores are
suggestive (but not diagnostic) of family dysfunction, or dissatisfaction of the member
interviewed. Low scores require further assessment of the family function. (Smilkstein, 1978)
• Family Assessment Device (FAD): The FAD is based on the McMaster Model of Family
Functioning. It has 53 items and 7 dimensions: general functioning, problem solving,
communication, roles, affective responsiveness, affective involvement, and behavior control.
The items are statements that a person can make about his/her family. Choice of responses
include: strongly agree, agree, disagree, and strongly disagree. The 12 item general functioning
scale can be used as a brief assessment tool. (Ridenour et al, 1999)
• Family Assessment Measure III (FAM-III): The FAM III uses 3 scales: General scale for over-
all family health (50 items), Dyadic relationships scale on how the person views his/her
relationship with another family member (42 items), and the Self rating scale on how the person
rates his/her own functioning within the family (42 items). The FAM Brief Version is a brief
assessment tool. (Skinner et al, 2000)
• Family Adaptability and Cohesion Evaluation Scale (FACES): The FACES is based on the
Circumplex Model of Family Function which is based family cohesion, adaptability (flexibility)
and communication. Families function best when there is a balance between cohesion and
adaptability, as well as good communication (Olson, 1985). The FACES IV Scale has 6 scales for
cohesion-flexibility with 7 items each (42 items), a family communication scale (10 items), and a
family satisfaction scale (10 items).
Areas of Inquiry for Outlining the Family’s Strengths and Vulnerabilities
Illness and History

• How the illness presented itself
• Was the illness identified and diagnosed rapidly?
• Did the family feel a sense of competence in their handling of the situation?
• Stage of the patient’s disease at diagnosis and prognosis
• Previous patient and family experiences with physical health problems and trauma, behavioral,
an psychological problems, including substance abuse
• Family’s ways of coping with any previous health or mental health problems, especially family’s
cohesiveness and communication style
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Adult patient as a person
• Pre-illness relationships with family members, friends and peers, significant others
• The patient’s level of trust, independence, ability to deal with stress and isolation, functional
capacity, ability to cope, social skills and ability to effectively deal with others
• Pre-illness functioning at work or school, plus any existing standardized test information
• Energy level, moods, sleeping, and eating habits before and after illness
• Adherences to family beliefs and values
• Spouse or family member in whom child confides when he/she has a problem
• How patient responds to the diagnosis
Child patient as a person
• Pre-illness relationships with parents, siblings, peers, significant others
• As seen by parents, the child’s basic trust, sense of self, ability to deal with separation, level of
self-care, ability to use fantasy and play, orientation toward and ability to effectively deal with
others, curiosity
• Pre-illness functioning in school, plus any existing standardized test information
• Energy level, moods, sleeping, and eating habits before and after illness
• Adherences to family beliefs and values
• Parent in whom child confides when he/she has a problem
• How child responds to the diagnosis
For Spouse, Parents (especially if patient is a child), and other Family Members
• Family constellation, and extended nuclear family
• Relationship with one another before the diagnosis
• Physical health, previous losses, mental health, alcohol and drug abuse, self esteem
• Ability to express range of feelings (anxiety, sadness, guilt, fear, etc)
• Feelings toward the patient
• Emotional and physical symptoms since patient’s diagnosis
• Attitudes toward and knowledge and understanding of the life-limiting illness
• Religious beliefs
• Expectations about the future
• Opinions about sharing medical information with the patient
Spouse
• Length of marriage
• Relationship with one another before the diagnosis: level of collaboration; any actual or
contemplated separations, sexual adjustments, differences in coping styles and communication
patterns, trust, mutual respect
• Comfort with spouse role and married life
Parents
• Length of marriage
• Relationship with one another before the diagnosis: level of collaboration in parenting; any
actual or contemplated separations, sexual adjustments, differences in coping styles and
communication patterns, trust, mutual respect
• Comfort with parent role, nurturing interests and capacities, abilities to set limits and allow
independence, knowledge of child’s non-verbal cues, awareness of importance of role-modeling,
knowledge of growth and development, ability to be protective yet separate
Siblings, Children in the Family
• Ages and sexes; Health
• Role and responsibilities in family
• Social (family, community, school) adjustment
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• Perceptions of parents’ attitudes toward them
• Quality of current and past relationship to ill child
• Ability to express feelings
• Understanding of illness; How informed about the illness and by whom?
• Degree of involvement in the diagnosis, treatment, and care
• Capacity to ask questions
• Parent in whom the child confides when he/she has a problem
Environment
• Housing, Quality of neighborhood and community support
• Sleeping arrangements within the home
• Changes in place of residence over the patient’s lifetime
• Financial status, financial support and resources
• Hobbies, indoor and outdoor activities
• Involvement within the community before the illness
• Distance in miles, means of transportation, and travel time to treatment center
Factors that Place Families At Risk

• Other ongoing chronic health or mental health problems
• Alcohol or Substance abuse
• Economic and Financial Problems: rural or urban poor, overextended (debts) middle-class
families, loss of job, unemployed, minimal or no health insurance, no other source of assistance
• Separation, Divorce, Stepfamily system
• Chronic unresolved conflicts among family members
• Religious, Cultural, Language Differences
• Families away from their social and cultural support network because of the patient’s need for
medical treatment elsewhere
Some Basic Family Needs

There are some basic needs of the family that the palliative care specialist and his/her team should
always address. These include:
• appropriate, and accurate information sharing
• education (palliation, comfort, problems and issues, care and management)
• training on caregiving and other important skills for patient and family care
• supportive care and counseling; spiritual care and support
• assistance in communicating with other physicians and carers
• counseling, advice, and possible assistance in practical and financial matters.
Developmental Tasks at the End of Life

Developmental Landmarks and Taskwork for the End of Life (Byock, 1996)
• Palliative medicine aims not only to ensure comfort, but also to improve quality of life and
preserve opportunities for people who are dying and for their families to grow through times of
illness, caregiving and grief.
• Help the patient achieve these landmarks and tasks. Relief of suffering and the attainment of
these developmental tasks and landmarks help the patient and family experience a “good death”
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Sense of completion with worldly affairs
• Transfer of fiscal, legal and formal social responsibilities
Sense of completion in relationships with community
• Closure of multiple social relationships (employment, commerce, organizational, congregational)
• Components include: expressions of regret, expressions of forgiveness, acceptance of gratitude
and appreciation
• Leave taking; the saying of goodbye
Sense of meaning about ones' individual life
• Life review
• The telling of "one's stories"
• Transmission of knowledge and wisdom
Experienced love of self
• Self-acknowledgment
• Self-forgiveness
Experienced love of others
• Acceptance of worthiness
Sense of completion in relationships with family and friends
• Reconciliation, fullness of communication and closure in each of one's important relationships.
• Component tasks include: expressions of regret, expressions of forgiveness and acceptance,
expressions of gratitude and appreciation, acceptance of gratitude and appreciation,
expressions of affection
• Leave-taking; the saying of goodbye
Acceptance of the finality of life - of one's existence as an individual
• Acknowledgment of the totality of personal loss represented by one's dying and experience of
personal pain of existential loss
• Expression of the depth of personal tragedy that dying represents
• Decathexis (emotional withdrawal) from worldly affairs and cathexis (emotional connection) with
an enduring construct
• Acceptance of dependency
Sense of a new self (personhood) beyond personal loss
• Developing self-awareness in the present
Sense of meaning about life in general
• Achieving a sense of awe
• Recognition of a transcendent realm
• Developing/achieving a sense of comfort with chaos
Surrender to the transcendent, to the unknown - "letting go"
• Peaceful surrender to the unknown.
• Letting go of other wordly concerns and attachment.
Factors that are Considered Important at the End of Life (Steinhauser et al, 2000)
The palliative care specialist should develop a clear understanding of what patients and families
consider as important at the end of life. Although symptom and pain control, adequate
communication, a sense of completeness, and preparedness for death are considered important by
most patients and families, there are many other factors that are considered important. Patient and
family preferences can vary and are highly subjective and individual; appropriate palliative care is
achieved by clear communication, appropriate advice and counseling, and shared decision making
that acknowledges and respects the values and preferences of the patient and his/her family.
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Some Factors that are Considered Important by Most Patients and Families
Be kept clean Have a physician who knows one as a whole
Be able to name a decision maker person
Have a nurse with whom one feels comfortable Resolve unfinished business with family and
Know what to expect about one’s physical friends
condition Have physical touch
Have someone who will listen Know that one’s physician is comfortable
Maintain one’s dignity talking about death and dying
Trust one’s physician Pray
Have financial affairs in order Share time with close friends
Be free of pain Believe that family is prepared for one’s death
Maintain a sense of humor Feel prepared to die
Be mentally aware Have funeral arrangements planned
Say goodbye to important people Presence of family
Be free of shortness of breath Treatment preferences in writing
Be free of anxiety Not be a burden to society
Have a physician with whom one can discuss Feel one’s life is complete
one’s fears Not die alone
Be at peace with God Remember personal accomplishments
Not be a burden to family Receive continued care from personal
Be able to help others physician
Determining Prognosis
Prognostication is not an exact science, but there are methods that help physicians provide
patients and families with useful prognostic information.
There are many models for prognostication that can be used, and there are many well recognized
prognostic indicators. The single most important predictive factor is functional ability (performance
status, PS); a measure of how much a patient can do for themselves, of their activity and energy
level. For example, patients with solid tumors usually lose 70-80% of their functional ability in the
last 3 months of life. Two performance status measures are the Karnofsky performance status,
KPS, (100 = normal; 0 = dead) and the ECOG (Eastern Cooperative Oncology Group) scale, (0 =
normal; 5 = dead). A median survival of 3 months correlates with a KPS <50 or ECOG < 3. If a
patient is in bed >50% of the time, this correlates to a median survival of approximately 3 months.
Some common cancer syndromes correlate with short median survival times:
- Malignant hypercalcemia: 8 weeks (except newly diagnosed breast cancer or myeloma)
- Malignant pericardial effusion: 8 weeks
- Carcinomatous meningitis: 8-12 weeks
- Multiple brain metastases: 1-2 months w/o radiation; 3-6 months with radiation
Appropriate prognostic information is essential for informed advance planning (including DNR
decisions) and decision making. Metastatic cancer usually has a predictable course; and
prognostication can be less difficult compared to non-cancer illnesses. In general, patients with
metastatic solid cancer, acute leukemia or high-grade lymphoma, who will not be receiving
systemic chemotherapy, have a prognosis of less than 6 months. However, patients with relatively
28
indolent cancers (eg breast or prostate cancer) have a better prognosis, unless additional
prognostic factors are present (declining functional status, dyspnea, weight loss). Other indicators
of short prognosis include malignant ascites, malignant pleural effusion or malignant bowel
obstruction that cannot be surgically bypassed. Non-cancer illneses such as COPD or CHF are
more difficult to prognosticate. Each exacerbation can lead to remission or death, and predicting
what will occur in the future can be difficult. However, this uncertainty can be used to initiate a
discussion with the patient and family; by acknowledging that one of the possible outcomes of a
future exacerbation is death allows you both to plan accordingly.
Some physicians tend to be overly optimistic in their clinical prediction of survival. Physicians may
overestimate by as much as a factor of 5. Every physician may overestimate, although the more
experienced physicians had less error. Inaccurate predictions are sometimes given for all types of
patients, including cancer patients and those with chronic non-malignant disease. As the duration
of the physician patient relationship increased, prognostic accuracy may actually decrease. Too
much optimism may be detrimental to patients and families in many ways. Advanced care planning
and DNR discussions are done only in the last few days of life; and late palliative medicine referrals
deprive the patient and family of important palliative care support and services. Palliative care is
most beneficial when it is provided for months, and not a few days. Overly oprtimistic
prognostication may cause patients and families to request futile, and often burdensome, care.
Realizing the true prognosis of a disease very late is difficult for the patient and the family; the
transition from curative to life-prolonging care to palliative care becomes abrupt and difficult.
Principles of Prognosis (AAHPM, 2003)

• No consistently accurate method of determining prognosis exists.
• Unless disease-specific criteria are available, functional and nutritional status are the best
predictors of prognosis.
• Despite the lack of accurate methods for determining prognosis, estimates of life expectancy are
very important to many patients and families.
• Physicians should provide interested patients and families with a relatively broad estimate of
prognosis, with caveats that prognosis is not an exact science and the course of an illness often
varies significantly from patient to patient.
• Prognosis may substantially influence patient/family behavior (e.g., completing a will, making
funeral plans, saying good-bye to loved ones).
Prognostic Indicators in Patients with Advanced Illness

• Clinical Prediction of Survival (CPS)
The physician’s clinical judgment on the patient’s prognosis can be overly optimistic, and exceed
actual survival by a factor of 1 to 5. CPS may improve with increasing experience. It may be
more accurate in predicting short-term and long-term prognosis, and less accurate for the
medium term. It may also become more accurate, the closer a patient is to death (horizon
effect).
• Performance Status (PS)
The performance status is a very good independent prognostic indicator. Eg. Karnosfsky
Performance Status (KPS), Eastern Cooperative Oncology Group (ECOG) PS, Palliative
Performance Scale (PPS)
• Physical and Psychological Signs and Symptoms
Some signs and symptoms provide additional prognostic capability to CPS and PS. Eg.
Dyspnea, dry mouth, anorexia, weight loss
29
• Combined Prognostic Indicators
The combination of prognostic indicators may increase prognostic accuracy. Eg. Palliative
Prognostic Score (PaP Score), Palliative Prognostic Index
Some Prognostic Factors for Terminally Ill Patients
Weeks to Months Hours to Days

alert decreased and/or fluctuating levels of
declining clinical course consciousness
increasing weakness, functional impairment precipitous clinical decline
impaired nutritional status decreased oral intake and urine output
Days to Weeks unable to turn over in bed
variable cognitive status Close to death
increasing contusion and/or restlessness (see section on syndrome of imminent death)
marked decline in clinical course periods of apnea
nearly bed bound rattling secretions in throat
cool or mottled extremities
Karnofsky Performance Status (Karnofsky et al, 1948)
Description Score Criteria

Able to carry on normal activity and work; no 100 Normal, no complaints, no evidence
special care needed of disease
90 Able to carry on normal activity, minor
signs or symptoms of disease
80 Normal activity with effort, some signs
and symptoms of disease.
Unable to work; able to live at home and 70 Cares for self, unable to carry on
care for most personal needs; varying normal activity or do active work.
amount of assistance needed
60 Requires occasional assistance but is
able to care for most of his/her needs.
50 Requires considerable assistance
and frequent medical care.
Unable to care for self; requires equivalent of 40 Disabled, requires special care and
institutional or hospital care; disease may be assistance.
progressing rapidly
30 Severely disabled, hospitalization
indicated; death not imminent.
20 Very sick, hospitalization indicated;
death not imminent.
10 Moribund fatal processes progressing
rapidly
0 Dead
In the absence of treatment, patients with a Karnofsky Performance Scale (KPS) of 40 lived on
average less than 50 days, while those with a KPS 20 lived only 10-20 days. Low KPS values
predict short survival, but high KPS values do not necessarily indicate longer survival.
30
Eastern Cooperative Oncology Group Performance Status (Oken et al, 1982)
Grade Definition
0 Fully active; able to carry onn all predisease performance without restriction
1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a
light sedentary nature (e.g. light housework, office work)
2 Ambulatory and capable of self-care but unable to carry out any work activities; up and
about more than 50% of waking hours.
3 Capable of only limited self-care; confined to bed or chair more than 50% of waking
hours
4 Completely disabled; cannot carry on self-care; totally confined to bed or chair
Palliative Performance Scale (PPS) (Anderson et al, 1996)

The Palliative Performance Scale is based on the KPS that is modified for palliative care settings.
% Ambulation Activity and Self-Care Intake Conscious

Score Evidence of Level
Disease
100 Full Normal Activity Full Normal Full
No Evidence of
Disease
Some Evidence of
Disease
with Effort or Reduced
Significant
Disease
70 Reduced Unable to do Full Normal Full
Normal Job / Work or Reduced
Some Evidence of
Disease
60 Reduced Unable to do Occasional Normal Full or
Hobby / House Assistance or Reduced Confusion
Work Necessary
Significant
Disease
50 Mainly Unable to Do Any Considerabl Normal Full or
Sit/Lie Work e Assistance or Reduced Confusion
Extensive Disease Redquired
40 Mainly in Unable to Do Most Mainly Normal Full or Drowsy
Bed Activities Assistance or Reduced +/- Confusion
30 Totally Bed As Above Total Care Reduced Full or Drowsy
Bound +/- Confusion
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20 As Above As Above Total Care Minimal Sips Full or Drowsy
+/- Confusion
10 As Above As Above Total Care Mouth Care Drowsy or
Only Coma
+/- Confusion
0 Death - - - -
Palliative Prognostic Score (PaP Score) (Pirovano et al, 1999)

The Palliative Prognostic (PaP) Score can be used in both cancer and non-cancer patients. The
physician’s clinical judgement is considered in the PaP score, since it includes the Clinical
Prediction of Survival (CPS).
Prognostic Factor Partial Score

Dyspnea Absent 0
Present 1
Anorexia Absent 0
Present 1.5
Karnofsky Performance Status >50 0
(KPS) 30 to 40 0
10 to 20 2.5
Clinical Prediction of Survival >12 0
(CPS) (weeks) 11 to 12 2
9 to10 2.5
7 to 8 2.5
5 to 6 4.5
3 to 4 6.0
1 to 2 8.5
Total white blood cell (WBC) Normal (4800 to 8500) 0
count (cell/mm3) High (8501 to 11000) 0.5
Very High (>11000) 1.5
Lymphocyte percentage (%) Normal (20 to 40) 0
Low (12 to 19.9) 1
Very Low (0 to 11.9) 2.5
Pap Score = Sum of all the Partial Scores
Risk Groups 30-day Survival Probability Total Score
A > 70 % 0 to 5.5
B 30 to 70 % 5.6 to 11
C < 30 % 11.1 to 17.5
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Determining Prognosis (Stuart et al, 1996)
Progression of Disease End Stage Heart Disease: Class IV failure. Ejection fraction
•Multiple Hospitalizations, ED visits, or of < 20%. Optimally treated, including afterload reduction. Two
increased use of other health care services to three acute care admits for heart failure in the past year.
•Serial physician assessments, laboratory or

diagnostic studies consistent with disease End Stage Lung Disease: Oxygen dependent. Unresponsive
progression to bronchodilators. Forced expiratory volume (FEV1) after
bronchodilator less than 30% of predicted. At best able to walk
•Changes in MDS in LTC facilities only a few steps without tiring. Resting pCO2 > 50, O2 Sat off
•Progressive deterioration identified by home O2 < 88, pO2 < 55 on oxygen. Cor pulmonale, unintended
health care weight loss > 10% of body weight, resting tachycardia > 100,
Changes in Functional Status two to three acute care admits for COPD in the past year.
•Cancer Patients
Renal failure: Chronic renal failure with creatinine > 8.0, off
–PPS < 50 or ECOG > 3 dialysis.
–PPS < 60 or ECOG > 2 with symptoms
–Decline in PPS of at least 20 units in 2-3 Cirrhosis and liver failure: Spends most of time in bed,
months albumin < 2.5, INR > 1.5. At least one of the following co-
morbidities: encephalopathy, history of spontaneous bacterial
•Non-Cancer Patients peritonitis, refractory ascites, recurrent variceal bleeding,
–Dependence in at least 3/6 Activities of hepatorenal syndrome.
Daily Living
–PPS < 50 Dementia: Largely mute, bed-bound, unable to ambulate
Unintentional Weight Loss without assistance. History of recurrent aspiration pneumonias.
•> 10% of normal body weight Progressive weight loss. At or beyond stage seven of the
Functional Assessment Staging scale. Urinary and fecal
•Body Mass Index (BMI) < 22 kg/m 2 incontinence. Presence of co-morbid conditions in the past
Intangible Factors year: aspiration pneumonia, pyelonephritis, sepsis, decubitus
ulcers, fever after antibiotics, difficulty swallowing or eating
• Patient’s personal goals and approach to food, unintended weight loss of >10% over last six months.
his or her disease
•Burden of investigation and treatment vs. Strokes/coma
potential gains for the patient Acute phase: Coma or persistent vegetative state secondary
Cancer Diagnoses to stroke beyond three day's duration. Coma with any four of
•Stage IV-presence of metastases the following on day three of coma: abnormal brain stem
response, absent verbal response, absent withdrawal response
•Natural history of disease to pain, serum creatinine > 1.5, age >70. Dysphagia severe
enough to prevent a patient from receiving food and fluids who
•Sensitivity of the disease to anti-neoplastic declines or is not a candidate for artificial nutrition and
therapy hydration.
•Prior treatment history where indicated Chronic phase: Clear-cut predictors have not been as well
Adult Failure to Thrive-Debility classified. Consider the following: poor functional status with
Karnofsky score <50%, post-stroke dementia with Functional
•General Criteria Assessment Staging System (FAST) score > 7, poor nutritional
–Declining Functional Status status whether on artifical nutrition or not, > 10% weight loss
over past six months, serum albumin < 2.5. Recurrent medical
–Unintentional Weight Loss complications such as aspiration pneumonia, pyelonephritis,
•> 10% ideal body weight sepsis, refractory stage three to four decubiti, recurrent fever
following antibiotics.
•Body Mass Index (BMI) < 22 kg/m2
• Multiple illnesses, with no single illness or
diagnosis itself being terminal
33
Models for Palliative Care Programs (von Gunten C et al, 2001)
Palliative care programs are more effective if they are well integrated into specific care settings
(e.g., hospital, nursing home, assisted living, home care, etc.). It must address the needs of the
population, providers, institution, specific care setting and local community. Palliative care services
must provide adequate services that also includes support for the family, continuity of care, optimal
use of institutional and community resources, and close collaboration with other professionals
involved with the care of the patient.
• Primary Palliative Care: should be available in all health care organizations, especially those
that care for patients with advanced disease and their families. It should be one of the basic
services provided by primary care and family medicine clinics to patients with advanced
diseases, especially clinics in the rural areas.
• Secondary Palliative Care: is provided by organizations staffed by a palliative care specialist/s
that support organizations and physicians who provide primary palliative care. Capabilities
exceed those of primary palliative care providers. Secondary palliative care organizations can
also provide educational support for primary palliative care providers.
• Tertiary Palliative Care: is provided by academic referral centers with expertise in palliative
care. Tertiary palliative care organizations and specialists are also responsible for promoting
and advancing the field through policies, guidelines, technical assistance, education and
research.
• Specialized Supportive Services: are provided by a variety of specialized organizations that
support palliative care physicians and organizations. These include organizations that provide
one of the following: social and/or psychosocial services, nursing and/or caregiver services,
child life services, home care services, and specialists who provide psychiatric and/or
psychological services, family therapy, specialized pain management procedures, palliative
radiotherapy, palliative chemotherapy, palliative surgery, and others.
Settings for Palliative Care Delivery
• Acute Care Facilities and Hospitals: Palliative care specialists in these facilities provide
palliative care services while patients are still receiving active curative treatment; and/or initiate
palliative care services during the transition from a curative to a palliative care approach.
• Tertiary Palliative Care Units: Palliative care specialists in these units help terminally ill
patients who require intensive palliative care interventions and management for complex
problems.
• Palliative Care Outpatient Centers: Palliative care specialists provide comprehensive
palliative care services which would have been difficult to do in regular physician clinics.
• Day Care Hospitals: These day hopitals provide a transitional setting between acute care
facilioties/ hospitals, and long-term care facilities (eg nursing homes). Comprehensive palliative
care services are provided in these settings.
• Inpatient Hospice Units: Inpatient hospice units provide in-patient terminal care, as well as
respite care, symptom management, supportive and rehabilitative care.
• Long Term Care Facilities and Nursing Homes: Palliative care specialists provide hospice
and palliative care services to residents in these facilities. The institution of these services in
long term care facilities has greatly improved the quality of life and terminal care of residents.
• Home: Many patients prefer to die at home. Hospice and palliative home care have made it
possible for many of these patients to live and die comfortably at home.
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Hospice
Hospice care is an application of palliative care and an important part of the palliative care
continuum. Hospice care is a way of delivering palliative care to patients with terminal illness and
their families. It is provided by a palliative care specialist/s, supported by an interdisciplinary team
of professionals and volunteers, and guided by an individual plan of care. Services are usually
provided in the patient's own home or in other alternative residences such as nursing homes,
hospice residential facilities or other congregate living facility. When care cannot be managed in
these locations or the family needs a rest from caregiving, the hospice program provides
alternative inpatient or respite services in a hospital, nursing home or freestanding hospice unit.
Hospice Organizations and Community Based Palliative Care
• Hospice Organizations: The most common hospice organization is the community-based non-
profit organization, usually organized by a volunteer group of health professionals and
community leaders in response to a need in the community. Volunteer intensive hospice
organizations are agencies that use professional volunteers (physicians, nurses, etc.) and lay
volunteers to provide hospice care to patients and families. Depending on the organization’s
resources and the expertise of its professional staff, these organizations can provide either
specialized supportive services, primary or secondary palliative care.
• Hub and Regional Hospice Organizations: In order to service several communities, a hub or
regional hospice model can be used. A hub hospice has a central office that supports satellite
offices. A regional hospice organization has several satellite offices that cover a wide area or
region.
• Hospice Alliances, Confederations and National Organizations: For purposes of mutual
support and the sharing of resources, hospices can band together to form a hospice alliance.
Hospices in one or more adjacent regions can form a hospice confederation.
• Community based palliative care through volunteer hospice organizations: If provided with
adequate resources and clinical expertise from palliative care specialists, volunteer hospices
can address the need to create accessible and comprehensive community based palliative care
programs offering either primary or secondary palliative care services. In order to improve their
clinical expertise, hospices can also partner with the medical staff of a local medical facility. A
community based palliative care model that involves collaboration between primary palliative
care physicians with the local volunteer hospice group is an efficient model for small
communities with limited resources. In smaller and more remote communities, a community
based palliative care program can also provide collaborative assistance with the patient's
primary practitioner directing care.
One promising and mutually beneficial model is a partnership between one or more local
hospices, and academic training programs with hospice and palliative care courses in its
curriculum.
Community Palliative Care Services (CPCS)
Hospice and palliative care can be provided at home and within the community. Community
palliative care services (CPCS) must:
• Be able to provide adequate, skillful and appropriate palliative care at home. This includes
medical and supportive care, psychosocial care, and spiritual care.
• Have appropriate and adequate management plans for emergencies and urgencies in place.
• Be able to provide adequate, skillful and appropriate care and support to family and caregivers.
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• Ideally have access to a medical care facility that can provide appropriate palliative care
interventions that cannot be done at home.
Two models of Community Palliative Care Services (CPCS)
1. Comprehensive care model provides comprehensive palliative care and nursing care services
upon the request of the primary care physician.
2. Advisory model provides specialist advice and support to the primary care physician, but does
not provide nursing care services.
Volunteers in Hospice and Palliative Care
• Volunteers have an important role in the delivery of hospice and palliative care in areas with
limited human resources. Much of hospice and palliative care in developing countries are
provided by volunteer-intensive hospice and palliative care programs.
• Volunteer work usually involves: direct patient care (personal care, medical caregiving, daily
living activities- eg bathing, feeding, helping with home chores, administering medications,
patient monitoring, providing respite care for family caregivers, prviding basic information and
supportive care, and others); or administrative support (eg secretarial, administrative activities).
• Maintaining a Volunteer Program
--- Determination of Manpower Needs: determine the needs of the hospice/ palliative care
program, and the patients and families it serves.
--- Recruitment: active recruitment of volunteers
--- Selection: develop and use appropriate selection guidelines to match volunteers with the
program’s needs
--- Basic Training: volunteers also learn the basic principles of hospice and palliative care; a
comprehensive training program maximizes the volunteer’s supportive abilities
--- Specialized Skills Training: the volunteer’s personal skills are identified and matched with the
program’s needs; some volunteer’s can be trained to perform specialized tasks
--- Activity: direct patient and family care, administrative, secretarial, and other activities.
--- Volunteer Support: The hospice/ palliative care program should provide it’s volunteers with
appropriate and adequate support; recognition and appreciation of the volunteer’s contributions
and services;
• A well maintained volunteer program which provides adequate volunteer support also minimizes
volunteer drop-outs.
Planning Transitions Between Care Settings - Discharge Planning
Transitions between care settings should be planned and managed conscientiously. Poorly
planned and managed transitions can lead to poor outcomes. The process of planning transitions
between care settings and discharge planning involves: determining the needs and limitations of
the patient and family; assessing the physical, environmental, and care requirements; and ensuring
that these needs are addressed, and requirements are met. Planning for discharge to home,
requires more than physical and environmental assessment and modifications- it also requires
addressing the patient and family’s worries and concerns, as well as the family’s caregiving
knowledge and skills.
Preparation
• Planning should begin early before the patient’s discharge/transfer. It begins with a
comprehensive multidimensional assessment (MDA). Based on the MDA, the various aspects
of the transition between care settings can be planned.
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• Obtain care plan recommendations from specialist care services involved in the care of the
patient.
• Involve patients, family, and caregivers in discharge planning. Determine their limitations and
their physical and environmental needs. Obtain their preferences, and address their fears and
concerns.
Receiving Place of Care

• Determine the patient’s needs which may include: the amount and level of caregiving needed
(eg nursing care- 24 hr/ part-time/ home visiting nurse; professional caregiver- 24 hr/ part-time;
trained family care-givers); equiptment and skills needed for them (eg ventilator; home oxygen;
tube feeding; syringe driver; infusion pump; tracheostomy; enterostomies; gastrostomy;
glucometers; nebulizer; and others); special care needs (eg glucometer monitoring; insulin
administration; IV/SQ/nebulized medications; neuro and vital signs monitoring; wound care;
physical therapy; other rehabilitation therapy needs; and others).
• The receiving place of care should be capable of providing appropriate supportive and medical
care for the patient.
• Determine the possible options: patient’s home, family or relative’s home, serviced apartment ,
assisted care facility, 24 hr nursing care facility / nursing home, extended care/transitional care
facility in hospital, hospice unit, acute palliative care unit, hospital in-patient ward
• Assessment of the place of care: interview staff and clients; visit the site if possible; review the
receiving facility’s policies, including policies on admission; estimate the costs
Equipment Needed
Equipments facilitate functional independence, and help in the care of the patient. The need for
equipment changes as the patients illness progresses.
• Good firm mattress / bed / hospital-type bed / comfortable chair / recliner/ anti-pressure sore
mattress and pads / blankets / pillows / back rest / triangular pillow / mechanical lift / bedside
table / night lamp
• Cane / walker / wheelchair / wheelchair ramp / handrail for stairs / stair lift
wheelchair: ensure that the wheelchair is appropriate for the patient and family caregiver’s
needs; should fit the patient’s room and place of care; place of care should be wheelchair
accessible; detachable sides may be needed for safe transfers; footrest should have
appropriate height; pressure relieving cushion may be needed to prevent pressure sores
canes and walkers: some patient’s may be able to ambulate safely with walking aids, such as
a cane or walker; teach the patient proper techniques; wheeled trolleys or kitchen carts can
sometimes be used in place of wheeled walkers; walkers without wheels may be safer for
some patients
• Grab bars for toilet and bath / commode / urinal / anti-slip devices, non-skid mats, abrasive
strips / elevated toilet seat / devices to assist in washing and dressing
• Feeding utensils / table, tray for dining / blender, food processor / equipment for enteral tube
feeding / cooler or refrigerator for ice
• Exercise equipment / television / radio / music player / books / toys
• Telephone / paper and pen / writing board / chart with letters, words, phrases, pictures, or
symbols / devices for communication / devices to call for help / devices to call quick response
medical team / devices to assist with memory / calendar / clock
• Manual or electric fan / air conditioner / heater / room thermometer / humidifier / air purifier
• Measuring cup or syringe for medicines / medicine tray / heating bag, heating pad / ice pack,
cooling pad / compression devices for edema / equipment for parenteral fluids or medications /
infusion pump, syringe driver / oxygen delivery equipment (portable, room set up; length of
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tubing; safety precautions) / incentive spirometry / nebulizer machine / suction machine /
mechanical ventilator / CPAP / Other special equipment
Environmental Assessment and Modifications

Modifications may be needed to accommodate the patient and avoid accidents and injuries.
Identify and modify areas that are unsafe.
• Flooring: To avoid accidental falls and injuries rugs and carpets have to be slip resistant,
secured or removed. Repair torn carpets, and prevent or fix curled edges (secure/ tack/ tape
down/ or remove). Check for uneven floor surfaces, barely noticeable steps and worn carpets.
Place secure rubber mats or skid resistant strips in potentially slippery areas, e.g. toilet and
bath, kitchen. Use non-slippery wax when cleaning and waxing the floor.
• Arragement: Clear the patient’s living space of problematic furniture and obstacles. Pathways
should be clear of obstruction. Furniture may need to be rearranged. Low furniture or glass
furniture which are difficult to see may cause falls and should be removed. Avoid tripod tables.
• Wires: Wires, telephone cords and tubes that can trip the patient should be secured or moved.
Tack them securely and if possible, run them along the walls, or underneath floor covering.
• Furnitures: Determine if furnitures are strong and secure enough to support the patient,
especially if the patient will use them for support and lean on them. Avoid furnitures with
wheels, or swivel. Fix loose arm/ back rests and legs. The patient may need chairs with
armrests that can provide leverage when getting up or siiting down.
• First floor location: Determine if the patient needs to stay in a room in the first floor, especially
if using the stairs is difficult and problematic.
• Accessibility: Keep frequently used items easily accessible. Install shelves and cabinets that
are easily reached.
• Handrails and stairs: Consider ramps, hand rails, grab bars, personal / call alarms, telephone
that is easily accessible and intercom if needed in the patient’s living space, including the toilet
and bath. Ideally, handrails should sufficiently extend at the top and bottom of the stairs, and
installed on both sides of the stairs, usually 2 ½ - 5 cm from the wall. Stairs that are too steep
or too long may need to be extended, and include a landing.
• Lighting: Ensure sufficient lighting and have easily accessible light switches, in all rooms,
including the stairwell. If the light is too bright, reduce glare by evenly distributing light,
translucent shades, and indirect lighting. Nightlights and or bright/ luminous paint, stickers, or
adhesives may be needed to clearly mark steps and accident prone areas.
• Temperature: Maintain a temperature that is comfortable for the patient.
• Dimensions: Measurement of door widths, height and number of steps, height of furniture,
height and dimensions of bath/shower/toilet. Try to keep step height manageable; usually
below 15 cm. Elevated toilet seat may be needed if seat is too low. Doors, windows, stairs,
and wall partitions may need to be adjusted and modified. Door may need to be widened, and
door locks may need to be removed or modified so that they can be opened from the outside
during emergencies. Furniture may need to be raised securely to accommodate the patient.
Discrepancies in the height of steps in stairs may lead to falls.
• Fire safety: Move sources of heat or fire away from oxygen equipment, beddings and other
combustibles. Fix exposed wires and faulty electrical connections. Consider smoke detectors.
• Emergency plan: Prepare an emergency escape plan in case of fire and other emergencies.
Transportation
• Determine if the patient is stable enough to be transported to the receiving place of care.
• If an unstable terminally ill patient is being transported to die at home, based on the patient
and/or family’s preferences, determine the risk and probability that the patient will die during
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transport. Make sure that the patient and family are aware of this risk, when they make their
informed decision.
• Identify the transportation options that the patient and family can use in the future. Help
arrange for transportation services if needed, especially for hospital and clinic visits.
• Advice and teach the patient and family how to easily get in and out of their vehicle.
Medical Care
• Prior to transfer / discharge, the family / caregiver must have adequate knowledge, attitude
and skills to care for the patient. They must know the important details about the illness and
care plan.
• Prepare a medication guide. Medications should be in well marked and labeled containers.
• Educate family / caregivers about what to expect as the patient’s illness progresses, what
complications may happen, what they can and need to do, and who they can call for help and
advice.
• Family / caregivers must know basic skills in moving, carrying, transferring, feeding, bathing
and dressing the patient. They must know how to monitor, assess and record the patient for
any problems, and to determine the effectiveness of the current management plan. They must
know how to administer the medications, and how to use equipment needed for the patient’s
care (e.g. oxygen equipment, suction, nebulizer, etc).
• In resource limited settings, the patient and family may have no other option but to have family
caregivers provide semi-skilled and skilled care which are normally and ideally provided by
nurses or professional caregivers. The palliative care team should teach all family caregivers
the necessary knowledge and skills that they will need. Observe them perform these skills
without guidance for at least a couple of times. Ensure that they have mastered the knowledge
and skills that they need prior to discharge to home.
• Printed or written instructions are usually very helpful and necessary. The family caregivers
must be able to call the palliative care specialist for consult and advice if needed.
• Adequate information about the patient’s illness and care plan must be given to the receiving
care team (community / primary care physician, staff of the nursing home, etc). Printed or
written instructions are usually very helpful and necessary. The receiving care team must be
able to call the palliative care specialist for consult and advice.
• Determine and schedule planned follow up with the palliative care team, and other specialists
involved in the patient’s care.
Supportive care and education of family and other caregivers

• There must be adequate medical, psychosocial, and spiritual / existential support for family
and other caregivers.
• Management plans should also be developed for family members, especially family caregivers,
to reduce distress, suffering, and problems due to caregiving.
• Family caregivers should not only be educated on patient caregiving; they should also be
taught problem solving skills, stress management, and self-care.
Site Visit / Trial Stay at the Receiving Place of Care

• The patient and family may be allowed to visit the site, and even stay for a trial period of 1 to 2
days. This can detect problems that have to be addressed prior to actual transfer / discharge.
Time of Discharge
• The patient must not be transferred / discharged to the receiving place of care before
discharge planning and preparations are complete.
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Communication and Counseling
2 in Palliative Care
Good communication and counseling are very important in palliative care. Effective communication
helps in the assessment and management of problems and issues that are important to patients
and families. Although communication and counseling are important in good medical care in
general, the presence of a life threatening illness makes them assume an even greater importance.
Distress and suffering are reduced; and patient and family satisfaction with the care improves.
Communication and Counseling Skills in Palliative Care
Attending Behavior and Listening

• Attend to the physical, phychosocial, and existential/spiritual needs of the person. An attending
behavior encourages people to communicate, lets them know that they are being listened to,
and shows empathy. Empathy is the ability to adopt or understand the person’s frame of
reference and communicate it back.
• Listening aims to understand the meaning of the person’s message, evaluate that information
based on a set of objectives and goals, and be aware of the person’s feelings.
• Attending Behavior: S-H-O-V-E-L-E-R: SEATING arrangement, HEAD nods, OPEN posture,
VERBAL following and appropriate speech, EYE contact, LEAN forward slightly, EMPATHY,
RELAXED
• Adjust your attending behavior, such as eye contact (direct or indirect gaze), body posture
(leaning forward, seating side by side), distance from person, speech (loudness, tone, speed of
speech) according to cultural, racial, and individual factors.
• Minimize and adapt to any obstacles to listening: Physical (eg poor seating arrangement,
distracting environment, distracting activities, noise, hearing problem, fatigue, speech
problems), Semantic (eg diffences in vocabulary, connotation and cultural meaning of words,
word use), Emotional (eg lack of interest, anxiety, emotionally stressed), and Mental (eg slow
understanding, confusion)
Appropriate Questioning
• Open-ended Questions and Probes
Open-ended questions are not answerable by yes and no, or simple statements of fact. Probes
are are open-ended questions that are used to elicit more information. One can probe for
content (more specific information) or for feeling.
Advantages: These give people chance to communicate what is important to them, and them to
explore, clarify, and elaborate their concerns.
Disadvantages: These may introduce too much ambiguity; may be difficult for people who have
problems organizing or expressing their thoughts; and may make some people anxious,
threatened, or uncomfortable if they are not used to this form of questioning.
• Close-ended Questions
Close-ended questions are answerable by yes and no, or simple statements of fact.
Advantages: May help some people get started if they find it very difficult to do so with open-
ended questions. Obtain specific information, or much needed information quickly. Limits a very
talkative person from giving too much extraneous and irrelevant content. Can introduce
important, but sensitive information/topic, that the person is very hesistant about introducing on
his/her own.
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Disadvantages: Restrictive, and gives the person less opportunity to explore, clarify, and
elaborate their concerns.
• Examples of Open-ended and Close-ended Questions
Open: “How do you feel?” Closed: “Are you sad?”
Open: “How is your relationship with your son?” Closed: “Is your relationship with your son ok?”
• Questions that should be avoided or used carefully:
“Why” questions: makes the person defensive
Multiple questions: several questions asked without giving the person a chance to respond
Leading questions: questions are asked in a way that implies the answer one expects
Minimal Leads or Minimal Encouragers

• Minimal verbal leads are short prompts and utterances (e.g. “and then,” “right,” “uh huh,” “umm,”
“hmm,” “ah”) that let patients know that you are interested, that you follow them, and encourage
them to continue and communicate more. They should be non-intrusive, and should not impede
or change the direction of the person’s flow of thought.
Paraphrasing
Paraphrasing involves rephrasing the patients’ message in a simple, clear and precise manner. It
ensures that the message is understood, helps patients to better understand and articulate their
thoughts and feelings, and lets patients know that you are listening and encourages them to
communicate more.
• Steps in Paraphrasing:
• Use an appropriate beginning: “I hear you saying,” “It sounds like,” “In other words,” “Let me
see if I understand”
• Restate the main ideas of the person’s message. Don’t add to or change the meaning of the
message. Avoid repeating the exact same words (“parroting”) of the person’s message.
• Confirm the accuracy of your paraphrase. Ask (eg “Is that right?”), and/or look for sign from
the patient that it was correct (eg nodding).
• Example: Person: “I know it doesn’t help my anxiety to stay inside my room all day.”
Paraphrase: “It sounds like you know that you should avoid staying inside your room all day to
help your anxiety.” Then look for a sign of confirmation or ask “Is that right?”
Clarifying
• Clarifying goes beyond a paraphrase by interpreting what the message meant.This helps bring
vague material into focus. Clarifying may include: asking for clarification, making an educated
guess, or informing the person that you need more information. Perception checking is the
method of obtaining feedback about the accuracy of your listening and understanding.
• Steps in Clarifying:
• Let the person know that you want to clarify something.
• Paraphrase or make a restatement.
• Ask for clarification. Ask for feedback regarding the accuracy of your statement.
• Ask the person to correct your perception if it is inaccurate.
• Examples: “Is it possible that you feel..? Is that right?“ “Help me understand what you mean by
that. You are (paraphrase). Is that right?”
Reflecting
• Reflecting involves responding verbally to a person’s emotion or behavior.
• Reflecting Feeling or Emotion
This involves helping patients articulate their feelings. This helps the patient identify and
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acknowledge their feelings, explore its causes and effects, and makes the patient feel
understood.
Examples: “You seem anxious today.” “You seem sad when you talked about your hip pain.”
• Reflecting Experience or Behavior
This involves verbally reflecting the patient’s gestures, actions, and other non-verbal
expressions and messages. This helps the patient identify and acknowledge the behavior,
explore its causes and effects, and explore the thoughts and feelings behind the behavior.
Example: “When you mentioned your eldest child, you closed your eyes and shook your head.
What does that mean?”
• Steps in Reflecting:
• Listening and observing the person’s behavior.
• Identify the behavior, or the feeling.
• Reflect back to the client. You may add content (eg “You feel …, because …), and check for
accuracy.
Confrontation
• This involves gently exploring uncomfortable subjects, and pointing out distortions,
contradictions, and mixed messages. This makes the person aware of the discrepancies or
contradictions in his/her thoughts, feelings, and/or behaviors; and encourages the person to
explore other ways of viewing himself/herself and the situation.
• Mixed messages: verbal and nonverbal behavior/ verbal message and behavior/ inconsistent
verbal messages/ nonverbal messages seem inconsistent/ or during family meeting, two people
with conflicting messages
Example: “When you talk about your children, you say that you understand why they don’t visit
you often, but I see tears in your eyes. How do you feel when they don’t visit?”
Focusing
• Patients are sometimes overwhelmed by several problems and issues. Focusing helps them
prioritize and determine which issues and problems are most important to them.
Example: “You mentioned a lot of problems- your children, money, job, transportation... But of
all these you mentioned which one/s is the most distressing to you?”
Summarizing
• This involves the use of 2 or more paraphrases and/or relections to summarize or condense the
person’s messages or what was discussed during the entire session. It ensures that the
patient’s main concerns are understood, integrates the person’s messages, identify common
themes and patterns. It can be used to begin a session, end a session, review progress, or to
transition to another topic.
• Steps in Summarizing:
• Recall the main content and emotions of the messages. Identify patterns and themes.
• Use an appropriate beginning (eg “Let me see if I understand what you told me…”).
• Summarize.
• Confirm the accuracy and assess the effectiveness of your summary.
• Example: “Let me see if I understand what you have told me. “When you suddenly felt very
short of breath, you thought that you were going to die, which made you feel frightened and
alone and you thought about ending your life. However, if the shortness of breath can be
controlled and your family stays with you, you’d rather not end your life because you still have
things you’d want to do before you die.”
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“BATHE” Approach
Use the BATHE approach to respond to emotions (eg fear, anger, depression), to express
empathy, and to create an empathic setting.
• Background: Actively listen. Understand the context and situation.
• Affect: Acknowledge and identify the feeling or emotion (eg “you seem sad”).
• Troubles: Explore what troubles and concerns the person the most (eg “tell me what is making
you feel sad”)
• Handling: Explore how the person is handling their troubles and concerns.
• Empathy: Show empathy, concern, and a sincere desire to help. Statements such as “I know
how you feel” is commonly used; but a paraphrase may be more effective (eg “So you feel sad
because you cannot be with your children as often as before”). A paraphrase shows that you are
listening and that you sincerely understand.
Communication Along the Trajectory of Illness
• Time of the Initial Diagnosis

Encourage and answer questions about the disease and treatment. Don’t close or discourage
communication by brief, curt remarks.
• When Treatments are Ineffective and Death is Possible
Encourage and answer questions about the disease and treatment. Acknowledge the concerns
and the uncertainty of the situation, but provide reassurance that the entire care team is working
to help the patient and the family. Don’t close or discourage communication by brief, curt
remarks.
• When Death is Becoming More Probable
Acknowledge the seriousness of the situation, but provide reassurance that the entire care team
is working to help the patient and the family. Encourage and answer questions about the
disease and treatment. Don’t close or discourage communication by brief, curt remarks.
• When Death Becomes Inevitable
Help the patient and family cope during this very stressful time. Guide and help them in making
decisions. Help them plan and prepare for death. Do not impede or delay the patient and the
family’s emotional and practical preparation for death by not telling them about the true situation
(that death looks inevitable), or by giving them false hope by continuing to give optimistic
statements about the possibility of cure. Encourage and answer questions and concerns.
• During the Terminal Phase, When Death is Imminent
Acknowledge the situation. Encourage and answer questions and concerns. Help and guide the
parents and other family members on what and how to tell the children. Do not say nothing and
prevent opportunities for the patient and family (including the children if appropriate) to give
their final expressions of love and caring through words, gifts, visits and others. Encourage and
answer questions and concerns. Help them cope. Address their fears and worries.
• When Death has Occurred
Be open to discussions and questions about the illness and death. Acknowledge the family’s
loss. Tell them that grieving is normal and part of the healing process. Offer bereavement
support and counseling. Teach the parent and adult family members how to help the children
grieve. Assure them that children can usually cope well, but do not use this as an excuse for
you not to encourage and teach the use of proper communication, education, support , and
other measures which can help the children cope better.
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C-L-A-S-S protocol for clinician-patient interviews
C: Physical CONTEXT or Setting

• Physical Space – Ensure privacy. Sit down. Keep eyes at same level as patient’s. No physical
barriers and about 2 ft of space between you and the patient. Have a box of tissues available.
• Family / Friend / Relative – Allow the patient to have companion present. Seat companion next
to the patient, not between you and the patient.
• Eye contact / Body language – Look relaxed and not hurried (sit down and relax). Maintain eye
contact as much as possible.
• Touch – If the patient appreciates and is comforted by touch, and if the physician is
comfortable with touch, then it may be helpful to touch a non-threatening area (e.g. forearm, or
hand) to provide comfort.
L: LISTENING skills
• Open ended questions to elicit response - e.g. “how do you feel about that?” “how are you?”
• Facilitate – Pause; allow the patient to speak freely. Nod, smile, and say something like “tell
me more about it”. Repeat key word/s from the patient’s last sentence/s, in your response.
• Clarify – Politely clarify any ambiguous topic.
• Handling Interruptions – Handle interruptions (e.g. phone call, etc.) sensitively and politely.
A: ACKNOWLEDGE emotions and explore them
• Acknowledging the emotional content of the interview, makes you appear supportive, and
comforts your patient.
• The Emphatic Response – The emphatic response is a skill, not a feeling. It is not necessary
for you to share the same feelings as the patient or agree with the patient’s view and
response.
How to give an emphatic response: Identify the emotion (e.g. sadness, anger, shock). If you
are not certain of the emotion, use open ended and direct questions until you are. Identify the
cause/s or source/s of the emotion. Respond to show that you have made a connection
between the emotion and its cause/s or source/s. Examples are, “it must have felt depressing”,
or “the diagnosis has clearly come as a shock”.
S: Management STRATEGY
• How to arrive at a reasonable management strategy - Assess the patient’s expectations.
Determine the reasonable options, including the option/s that you think is/are best. Propose a
strategy. Obtain and assess the patient’s response. Consider at what stage of action are they
in: precontemplation, contemplation, implementation, or reinforcement phase? Agree on a
stategy and plan.
S: SUMMARY and closure
• Summarize the main topics that were discussed.
• Ask if there are any questions or issues that the patient wants to ask and discuss. Address
them briefly and plan to discuss them further during the next meeting.
• Clearly define and p[lan for the next discussion.
Basic protocol for supportive counseling (Dionisio A and Neri M, 2005)
Build Rapport
• Social conversation (“small talk”); create a comfortable atmosphere
• Establish a trusting relationship
Catharsis and Ventilation
• Identification of problems and ventilation of emotions: Person talks about the problem/s and
how he/she feels about these problem/s.
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Insight
• Identify the Strengths: Identification of internal and external resources and strengths: Person
is asked about what strengths and resources he/she still has inspite of his/her problems.
• Identify the Needs: Identification of underlying needs: Person is asked about what he/she
needs.
Plan of Action
• Develop practical and concrete ways of addressing the need/s. Person develops a plan of
action with the help of the counselor.
S P I K E S protocol for giving important medical information
S: SETTING and listening skills

• (Same as physical context and setting “C” in C-L-A-S-S)
• (Same as listening skills “L” in C-L-A-S-S)
P: Patient's PERCEPTION of condition and its seriousness
• Ask what he/she suspects about the current medical problem.
• While the patient relies, listen to his/her level of comprehension, and determine if there is any
mismatch between the patient’s perception/s and his/her actual medical condition.
I: INVITATION from patient to give information
• Ask the patient what he/she wants to know about the medical problem and/or treatment.
• Respect the patient’s right to know.
• Offer to discuss other issues and details, and/or answer other questions at a later time, if that
is what the patient wants.
K: KNOWLEDGE - giving medical facts
• Help the patient understand and comprehend the information about the medical condition
and/or treatment.
• Give information gradually, in small easily understandable portions.
• Use language that is appropriate and understandable to the patient.
• Regularly confirm that the patient understands the information that you have given after each
small portions.
E: EXPLORE EMOTIONS and EMPATHIZE as patient responds
• (Same as acknowledging and exploring emotions “A” in C-L-A-S-S)
S: STRATEGY and SUMMARY
• (Same as Management Strategy and Summary and Closure “S-S” in C-L-A-S-S)
Protocol for Communicating Bad News
Getting the Setting Using basic communication and facilitation skills

Right Setting up the physical setting of the interview. Ensuring privacy.
Getting the body language right
Making eye contact
Finding out what Asking the patient what he or she already knows or suspects (i.e.,
the patient knows What have you made of all this? What were you told?)
already Listening to the way in which the patient describes the situation,
noting the vocabulary used and the level of comprehension as well
as denial (which is not confronted at this stage)
45
Finding out what Obtaining a clear invitation to share information if this is what the
the patient wants patient wants (i.e., by asking questions that begin, Are you the sort
to know of person who ...?)
Leaving the option to request information open if the patient
declines
Sharing and Giving Aligning: starting at the level of the patient’s comprehension and
information using the same vocabulary
Educating: giving information in small chunks and in small
language, and checking regularly to see whether the content is
understood
Responding to the Acknowledging all reactions and feelings

patient’s feelings Using the empathic response technique (identifying emotion and
and reactions cause of emotion, and responding to show the patient that this
connection has been made)
Dealing with crying and with anger and other strong emotions
Closing Summarizing the major areas discussed

Asking the patient whether there are other important questions or
issues that he or she wishes to discuss now
Making a clear plan for the next meeting
Patient Preferences When Physicians Communicate Bad News (Johnston et al, 1996)
• Direct, empathetic communication
• Information about diagnosis, which provides a name for their condition
• Information about prognosis and how the illness is likely to affect their qualify of life
• Inclusion of a family member or trusted friend in the discussion
• Encouragement to ask questions
• Information that is neither overly optimistic nor overly pessimistic
• Practical information about what to do and how to obtain additional information
Basic Communication Protocols in Palliative Care (from the EPEC Project)
Establishing the Communicating Withdrawing Treatment

Goals of Care Bad News
1 Use the right setting. Plan what to say. Determine participants. Allow adequate time.
2 Determine what the Determine what the patient Determine and review the
patient knows. Clarify the knows. Clarify what he/she goals of care.
situation and context. can comprehend.
3 Determine what the Determine what the patient Establish the context of the
patient wants to wants to know. case. Discuss the changes
accomplish. Help Understand, support, and that led to the discussion
distinguish realistic vs respect the patient’s about treatment withdrawal.
unrealistic goals. preferences.
46
4 Help the patient form Share the information. It Discuss the treatment, and
realistic goals and discuss should be clear, accurate, whether it meets the goals of
how these can be and understandable. care. Discuss alternatives to
achieved. Work out the treatment. Discuss what
unrealistic goals. can happen if the treatment
is withdrawn.
5 Respond to the patient’s feelings and reactions with empathy. Listen. Allow time for and
encourage the expression and exploration of feelings and reactions. Be supportive and
caring.
6 Summarize. Agreee on a Summarize. Plan for the Summarize. Plan for the
plan of care to meet the next steps in the care of withdrawal of treatment if
goals. Include plans for the patient. Offer this is the patient’s or
follow-up, review, and assistance and support. family’s decision. Document
modification of the plan if Discuss other sources of the decision process.
needed. Document well. support. Document well.
Peaceful Awareness
The patient and/or family member’s awareness of the patient’s serious life threatening or life-
limiting illness can have beneficial and potentially harmful effects. Information sharing and
disclosure should be accompanied by regular assessment, and appropriate interventions to help
patients and families cope. Patients and families who receive adequate palliative care support, are
able to cope better and achieve a sense of inner peace and peaceful acceptance. Peacefully
aware patients and families have lower rates of psychosocial problems than those who are not
peacefully aware. Those who are peacefully aware are also more satified with the care they
receive, are better able to participate in the care plan, and achieve better quality of life, and better
control of distress and suffering.
Family Meeting and Counseling
Family-centered care is a desired goal of hospice and palliative care. Family therapy methods can
be helpful during palliative care and bereavement.
The application of family therapy involves two concepts—adherence and competence. Adherence
is the extent to which a therapist uses prescribed, approaches and techniques described in the
therapy manual. Competence refers to the level of skill the therapist has in delivering the therapy,
their ability to take "the relevant aspects of the therapeutic context into account" and to respond to
these appropriately.
Counseling Techniques for Use During a Family Meeting (AAHPM, 2003)
• Use listening techniques arid nonverbal behaviors that communicate empathy and interest,
encourage patients and family members to talk, indicate tire physician is listening, and enhance
tire patients and family’s sense of being heard.
• Demystify arid correct misconceptions, such as ‘using morphine causes addiction” or “when
artificial nutrition is withheld, terminally ill patients suffer arid their lives are shortened”
• Acknowledge the fear, grief, and guilt experienced by families who care for terminally ill patients
(e.g., ‘If only I had fed him more, he wouldn’t be so thin,” and “If only I had taken her to a
different doctor, she wouldn’t be dying now”).
47
• Exhibit equal loyalty to all members of the family, and refrain from taking sides with one or more
family members.
• Help patients and family members identify their strengths and set realistic short-term goals.
• Use reframing to help patients and families recognize other perspectives.
• Help patients and families make sense of what is happening to them by engaging in an ongoing
search for meaning.
Conducting a Family Meeting for Decision Making and Planning
I. Preparation: Review the important aspects and details about the case. Agree with other
consultants on the assessment, management options, and prognosis, as much as possible.
Establish an agenda; discuss the case with other consultants involved in the case. Prepare the
materials that you will use. Ensure aappropriate setting and attendance of participants (see below).
Clarify family meeting goals/ taget outcomes of the meeting in your own mind.
II. Setting: comfortable, quiet room with adequate privacy, relaxed atmosphere. Avoid or
minimize obstacles to communication; avoid obstacles (eg large tables or desks) separating
participants.. Turn off phones; avoid interruptions. Everyone should be comfortably seated,
preferably circular seating. Try to sit close to the participants.
III. Participants: To be determined beforehand. Who should come, family members, priest,
chaplain? Interpreter? May include: patient (if able to participate); legal decision maker/health care
power of attorney; family members; social support; key health care professionals. A meeting can
be conducted even if complete attendance is not possible.
IV. Steps:
A. Introduction
• Introduce the participants.
• Establish rapport. Introduction of all participants.
• Review meeting goals, and specific decisions that need to be made.
• Establish rules for the meeting: about confidentiality, courtesy, empathy, minimize interruptions,
being supportive, each person will have a chance to ask questions and express views, no
interruptions, and others.
• Identify legal or surrogate decision maker if the patient is not competent. Determine who is going
to communicate with other people who are not present. Invite questions.
B. Review the Important Aspects of the Case
• Assess the patient and/or family’s understanding. Determine what the patient/family already
knows, and/or understands about the patient’s medical condition; preferences for information
sharing and decision making; Hopes and fears? Intra-family conflicts? Conflicts between staff
and family? Note family interaction. Invite questions.
• Review the important aspects of the case, including current status, current management plan
and prognosis. Focus on the aspects of the case that are relevant in the decisions that need to
be made. Ask the patient and family members if they have any questions. Answer questions,
clarify issues, educate and share information.
• Clarify important issues, use understandable language. Beware of physicians’ tendency to talk
too much, give too much detail, lecture, and focus on technical matters, while not listening
enough to how the family is responding. Ask: What are your views on the possible options?
Benefits and burdens?
C. Family Discussion
• Facilitate family discussion.
48
• Answer questions, clarify issues, educate and share information.
• Choose appropriate methods, and tools to facilitate discussion and decision making. A brief
focused meeting for decision making and planning can use a basic problem solving approach.
D. Decision Making and Planning for a Family with a Competent Patient
• Ask patient about his/her decision/s?
• Ask each family member if they have any questions or concerns about the patient’s decision/s?
And how they will support the patient’s decision/s?
• Explore family beliefs. What It Is Like For the Patient Now? Do you think he is suffering in any
way? Quality of life, degree of discomfort, distress, and suffering? Functional status and
independence? What are your concerns?
• Leave room to let family discuss alone.
• If there is consensus, proceed to conclude the meeting; if no consensus, continue to explore
issues and points of disagreements to achieve a consensus, or if there is no more time, consider
respecting the patient’s decision, but also maintain continuity and schedule follow-up meetings.
• When there is still no consensus:
• Advice the family why it may be appropriate to respect the patient’s decision/s and preferences
for the meantime.
• Re-state goal. What are the patient’s reasons for his/her decision/s preferences?
• Continue to explore the issues: What values should the decision be based upon? How will the
decision affect the patient, each family member and the family as a unit?
• Allow the family more time to discuss. If there is no more time, schedule a follow-up meeting
within 1-2 days.
• Identify resources and obtain assistance if needed: Minister/priest; counselor; other physicians;
ethics committee
E. Decision Making and Planning for a Family with a Incompetent Patient
• Begin by asking about what the patient is like. Establish trust; appreciate the patient as a
person. Ask if family can recall conversations when the patient expressed preferences about
acceptable outcomes, such as loss of function, dependency, death, and life prolonging
measures.
• Ask what the patient would have wanted. Ask each family member in turn what they believe the
patient would choose if they could speak for themselves?
• Ask each family member what they think should be done?
• Leave room to let family discuss alone.
• Examples: Tell me about your father. What is he like? How has he dealt with this illness? If your
father could talk, how do you think he would want us to do? I can see that there is some
difference in opinion about what your father would really want. Let’s talk more about what you
think he meant when he said not to put her on the ventilator.
• If there is consensus, proceed to conclude the meeting; if no consensus, continue to explore
issues and points of disagreements to achieve a consensus, or if there is no more time, maintain
continuity and schedule follow-up meetings.
• When there is no consensus:
• Re-state goal. What the patient would have wanted. What is best for the patient?
• Continue to explore the issues: What values should the decision be based upon? How will the
decision affect each family member and the family as a unit?
• Determine who is the legal/ surrogate/ appointed decision maker
• Allow the family more time to discuss. If there is no more time, schedule a follow-up meeting
within 1-2 days.
• Identify resources and obtain assistance if needed: Minister/priest; counselor; other physicians;
ethics committee
49
G. Formulate a Management Plan:
• Formulate your recommendations. Negotiate over differences in opinion.
• Explore and address concerns and questionsabout the plan.
• Be supportive. Offer further psychosocial or spiritual counseling. Refer to religious caregivers for
questions on religious matters.
• Provide reassurance that supportive and palliative care will continue to relieve distress and
suffering.
• Examples: How do you feel about the decision? What are your concerns? I want to be sure you
know that we’ll continue to relieve his distress and suffering.
H. Conclusion:
• Summarize consensus, disagreements, issues, concerns, decisions and plan.
• Document in the chart: Document the key decisions in the chart where everyone can see
them; inform other consultants and staff that were not present. Document who was present, how
did each family member and patient participate, describe the discussion – issues,
disagreements, concerns, etc., what decisions were made, follow-up plan.
• Continuity: Assure that you and the team are accessible. Maintain contact with family and other
members of the medical team. Schedule follow-up meetings.
CEA Method of Family Counseling (Neri M, CEA Method, 2006)
Discuss the Problem

C: Catharsis: Define the Problem
• Explore the patient’s and family’s understading of the problem
• Identify any misperceptions about the problem, especially those that are emotionally upsetting to
the patient and/or family member/s
• Probe and reflect the feelings that are shown or verbalized
E: Educate: Correct the Misperception/ s
• Share your findings, and educate the patient and family. Correct the misperceptions, especially
those that are that are emotionally upsetting.
A: Action and Treatment: Address the Problem
• Identify and correct any misperceptions about the treatment and management options.
• Develop a management plan with the patient and family.
• Involve the patient and the family in the management plan.
• Ask the patient and family what they need from each other. Agree on tasks and assignments for
the patient and family members.
Closing and Follow-Up
• Ask the patient and family if they have any questions or concerns about the management plan.
• Ask how they feel about the discussion and plans (feelings check).
• Ask the patient and family if they have any other questions or concerns.
• Address any upsetting or negative feelings, and/or concerns that need immediate attention.
Include other issues on the agenda of the next family meeting.
• Set a specific date and time for the next family meeting.
Intentional Family Method (IFM) of Family Counseling (Neri M, IFM, 2006)
Build Rapport
• Social conversation (“small talk”); create a comfortable atmosphere.
• Establish a trusting relationship with the family.
• Interact with members who seem least involved, or are least familiar to the counselor.
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Catharsis and Ventilation
• Identification of problems and ventilation of emotions: Each family member is allowed to talk
about the problem/s and how he/she feels about these problem/s.
• Use active listening skills. Be caring and supportive.
• Take a brief history of the problem.
Insight
• Identify the Strengths: Identification of resources and strengths: Each family member is asked
about what strengths and resources the family still has inspite of its problem/s.
• Define the Problem and Identify the Needs: Identification of underlying needs: Each family
member is asked about his/her needs that he/she wants the family to address.
Plan of Action
• Develop practical and concrete ways of addressing the need/s.
• Advice, educate, and provide the family with the information that they need to develop a plan.
• Each family member is asked what he/she can do to address the needs that were identified.
• Summarize the plan of action that was developed.
Strategies to Encourage Family and Patient Communication about Dying

(AAHPM, 2003)
Normalize Concerns
• Acknowledge the difficulty of talking about a serious illness.
Assess Concerns
• What are some of your concerns about sharing this information with the patient?
(Will the family be forced to talk about death every moment of every day until the patient dies?
Will the patient’s life be miserable every moment of every day until life ends?)
• What is likely to happen if the information is not shared?
• What is the worst thing that is likely to happen if the information is not shared?
• What is likely to happen if the information is shared?
• What is the worst thing that is likely to happen if the information is shared?
Educate
• Provide information about the benefits of communicating with patients.
— Most dying patients want more information about their diagnosis and prognosis.
— Most dying patients want to talk about death-related concerns.
— Withholding information sets a pattern of deception that can destroy a patient’s trust in the
physician and members of the family.
— Withholding information isolates patients and prevents them from planning for the future and
making treatment-related decisions.
— Ethically, physicians cannot refuse to share information with patients who ask for it.
— Communication is part of a continuing dialogue about the patient’s life (e.g., joys, struggles,
successes, failures, and search for meaning).
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Decision-Making Tool
The following Decision-Making Tool (DMT) provides a framework for reliable, flexible, and
comprehensive format for communication and formulation of a plan of care. Patients, families, and
care providers participate in this process. The balanced approach to gathering information results
in a comprehensive, family-centered plan of care.
Medical Indications Patient Preferences

In this area, document diagnoses and In this area, document the patient’s
symptoms: preferences/goals re:
• Potential medical interventions/options for • Being informed
treatment • Being involved in decisions
• Risks/Benefits • Desire for autonomy
• Cure rate/remission rate/length of remission • Desire for privacy
• Recurrence rate • Each specific treatment option
• Complications/complication rate If the patient is not competent to make
Treatments for temporary conditions unrelated to decisions, too young or unable to express
the primary diagnoses are included here. preferences, the “best interest” standard is
The discussion may be divided into curative, life used and generally determined by the
extending, and/or comfort care issues. health care proxy, next of kin, parents or
legal guardians. Assent by the patient may
be noted.
Quality of Life Contextual Issues
The components of life that give value and In this area, note the circumstances of the
meaning to the patient are noted here. Children patient’s life:
often respond to “What do you love to do?” Note: • Who lives in the patient’s home
• Important activities • Primary caregiver
• Important relationships • Extended family and friends
• Personal identity • Financial/Insurance facts
• Emotional well being • Study protocols
• Spiritual well being • Legal issues
When the patient is unable to render opinions, • Cultural and spiritual beliefs/needs
the health care proxy, next of kin, parents or • Physical restrictions/modifications of
legal guardians may offer opinions. home
• Family history of condition
• Needs/opinions of professional caregivers
Discussion
Discussion regarding the information in the four boxes is noted here. Implications and priorities
are enumerated in such areas as: Medical care options, Goals for care, How the information
relates from one box to the others
Plan
The plan of care is dynamic and is to be altered in response to patient/family request, medical
indications, and decisions reached collaboratively with the care planning team. Each issue is
noted separately on the Plan. Algorithm use is noted. The family receives a copy of the
completed Decision-Making Tool and blank Decision-Making Tool forms.
The DMT was developed by the Palliative Care Unit of the Children's Hospital and Regional Medical Center in
Seattle, WA, USA. The process employs a tool adapted from an ethical decision-making model developed by
Jonsen A, Seigler M, and Winslade W (Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical
Medicine).
52
Communicating with Children
Children and the Dying Adult Family Member (Keeley, 2000; Rauch and Arnold, 2005)
The dying of a young adult is always difficult, even more so when there are young children
survivors. A common question asked by the dying adult or their family members is, "what/how do I
tell the children". Physicians and other health care providers can provide leadership and guidance
to help young families through this crisis.
I. Screening and awareness

• Ask if the ill person has children at home; ask about their age, personality, and coping style
• Ask what the ill person has told the children about the illness
• Ask if they have a specific worry about the child
• Ask if the child has had recent problems in school, at home or with relationships
• Ask who the they would like to talk to if they have concerns
II. Give them some words.
• Parents and other adult family members worry about what to say if the child asks if he/she is
dying. Here are two examples of words a parent might use.
• Suggest statements and language that is honest, and life affirming that adults can use. Ask
them if they are comfortable using the statements you suggested.
• For example, “Cancer can kill people, but I am taking good care of myself. I am following the
doctor's plan so that I can live as long as possible." Or
"Even with trying my hardest and getting the best care from my doctors, my cancer is getting
worse; still I plan to live and enjoy life with you every day."
III. Give adults concrete examples to guide their interactions.
• Express interest in the child's day.
• Work to maintain normal routines (e.g. maintain family rituals: Friday night supper, Monday night
pizza, watching Jeopardy together).
• Welcome all questions but do not force discussions. Make sure you understand the real
question before answering; take your time to think about how you want to answer.
• Overhearing bad news is the worst way to hear it. Talk with children from diagnosis onward,
being sure to give updates when there are changes in prognosis or treatment.
• Avoid euphemisms (e.g. lump, boo-boo or sickness) that may confuse children.
• Ask children to share what they are thinking, or hear from others, so they do not worry alone.
• Prepare children for visits with the sick person. Describe what they are likely to see. Bring along
another adult who is comfortable to stay only as long as the child wants. Bring along markers
and paper, so children can leave the parent with a picture or message.
• Talk to the child's teacher or guidance counselor to alert the teachers. Ask teachers and the
child's friends' parents to let the parent know if the child talks about worries.
IV. Refer adults to popular books and materials on the subject
V. Know the resources for parents and children in your hospital and community
VII. Institute appropriate management for problems identified
• emotional, behavioral, and social problems, particularly those that are severe enough to
interfere with school, home or with friends
• risk taking behavior
• discord between the child and the surviving parent/family members
• significant discord between family members
• child refuses to communicate and cooperate with current providers and family members.
VIII. Consider referral to a child mental health specialist when problems continue or worsen
despite initial and ongoing standard management.
53
Communication and Leadership in Palliative Care Teams
Leadership Skills of Effective Team Leaders (Ajemian, 1993; Julia MC, 1994; AAHPM, 2003)
• Plan and facilitate meetings with clear goals and objectives.
• Ensure comprehensive assessment of patients and families.
• Ensure a comprehensive approach that meets the needs of patients and families.
• Ensure effective coordination and communication.
• Ensure that team decisions are shared with necessary parties- patient, family, physicians,
nurses, and other carers.
• Keep trivial information to a minimum.
• Motivate the team members to ensure the highest possible standards of palliative care.
• Adapt one’s leadership style to specific needs and circumstances.
• Ensure a well-balanced management approach- eg balance problem-solving and task-oriented
behavior with nurturing and motivating.
• Ensure regularly scheduled team evaluations to measure and improve the team’s internal
functioning and its effectiveness.
• Manage the teams resources (eg manpower, financial, etc), and mobilize support from the
community and health care institution/s.
Stress Overload and Burn-Out (Vachon, 2005; AAHPM, 2003)
Signs and Symptoms of Stress Overload in Physicians

• Fatigue; Tiredness out of proportion to the work that is being done
• Physical and emotional exhaustion
• Low morale; Loss of sense of humor; Boredom
• Over-conscientiousness, loss of a sense of proportion, and preoccupation with patients
• Working longer hours; Low job satisfaction; Decreased sense of personal accomplishment
• Conflicts with staff and scapegoating
• Decreased empathy; Avoidance of patients; Deterioration of physician-patient relationships
• Difficulties at home
• Distancing, depersonalization, and intellectualization
• Anger, irritability, frustration
• Helplessness, inadequacy, and insecurity
• Depression, grief, and guilt
• Weight loss; Gastrointestinal problems; Headaches; Other complaints or symptoms
• Impaired job performance; Increased absenteeism; Errors in judgment
Strategies for Managing Stress

• Develop a sense of competence.
• Develop practice patterns that enhance control and pleasure.
• Develop decision-making protocols.
• Develop collegial relationships with other professionals.
• Develop staffing policies that reduce stress.
• Develop a personal philosophy that provides a sense of meaning.
• Develop strategies that provide a sense of rejuvenation.
• Develop personal habits that increase the ability to cope with stress.
• Acknowledge life’s imperfections.
• If necessary, find new professional opportunities.
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Evaluation and Management of
3 Psychosocial and Spiritual Problems
Psychosocial Problems. Psychosocial distress exists on a continuum ranging from normal

adjustment issues through adjustment disorders; to a subthreshold (i.e., meets some diagnostic
criteria but not all) of diagnosable mental disorders; to syndromes that meet the full diagnostic
criteria for a mental disorder (e.g., major depressive disorder).
Psychosocial Distress Continuum and Hierarchy of Increasingly Severe Mental Disorders

Fluctuations in mood during normal adjustment --> problem-level diagnoses (eg partner
relationship problems, bereavement) --> Adjustment disorders --> Sub threshold mental disorders,
disorders not otherwise specified (NOS) --> Major mental disorders (eg major depressive disorder,
posttraumatic stress disorder, panic disorder, generalized anxiety disorder).
Psychosocial and Spiritual Distress: General Assessment Guidelines

1. Always consider psychological and spiritual distress.
Psychosocial and spiritual concerns affect mostl patients and families. The index of suspicion for
the presence of psychosocial or spiritual distress should be high, especially when the following
occur: physical symptoms are difficult to completely explain and do not respond to the usual
effective interventions; the emotional responses seem out of proportion to the loss; and erractic
compliance with management plans.
2. Establish a conducive atmosphere.
Establish a comfortable and relaxed atmosphere. Sit down and take time to help the patient feel
comfortable. It is difficult to elicit psychosocial and spiritual concerns from a partially clothed patient
sitting on a hard examination table, and with the physician standing near the door.
3. Express interest and desire to help with psychosocial and spiritual concerns.
Patients and family members report what they believe the physician is interested in hearing. Those
who lack experience, training, or interest in nonphysical problems may send nonverbal messages
conveying their discomfort or lack of interest. Asking about psycholosocial and spiritual concerns
shows the physician’s interest and validates the importance of such concerns. Asking only about
physical concerns will miss the presence of significant psychological or spiritual distress.
4. Listen and look for broader meanings.
Assessing only physical concerns devalues spiritual, psychological, and social concerns. It
distances the patient and family from the physician. Although deconstructing an illness (i.e.,
separating it into discreet, smaller problems) can be helpful in formulating a management plan, the
physician must also assess the patient as a whole person, and look for broader meanings. Ask
questions to elicit feelings and thoughts about the broader meanings of the illness and the illness’s
effect on the patient’s and family members’ lives.
Models of Coping with a Life-Threatening Illness

There are several models of how individuals cope with a life-threatening illness. The stage theory
of Kubler-Ross, and the task-based model are commonly used.
The Stage Theory based on the original work of Elizabeth Kubler-Ross: denial, anger,
bargaining, depression, and acceptance. However, there have been questions about: the actual
existence of these stages, the evidence that all individuals truly experience these stages, and the
sequential movement from one stage to another.
The Task-Based Model is a more flexible, fluid model that does not imply an order or sequence.
55
Four phases of a life-threatening illness:
1. The prediagnostic phase is the period of time prior to the diagnosis when an individual
recognizes symptoms or risk factors that make him or her prone to illness and during which
diagnostic studies are performed. This is not a single moment, but may culminate in one moment
when the diagnosis is first spoken.
2. The acute phase is the time of the diagnosis. It involves the crisis of diagnosis in which an
individual begins to understand the diagnosis and makes decisions regarding his or her medical
care.
3. The chronic phase of an illness is the period of time between the diagnosis and outcome.
Individuals attempt to cope with the demands of life, while attempting to cope with disease related
problems, treatments and side effects.
4. Recovery phase or terminal phase --Persons who recover from their disease must deal with
the psychological, social, physical, spiritual, and financial after-effects of the disease. Other
persons experience a terminal phase when death is inevitable. Goals change from curing the
disease and prolonging life, to providing comfort and focusing on palliative care.
Possible Losses Associated with Terminal Illness (Cassell, 1982; Cassell, 1991)
Physical and intellectual losses
Short-term memory Limbs, other body parts, the entire body
Mental, physical, and sexual Sense of good health and physical well-being
functioning Control over personal environment and body
functions
Emotional and psychological losses
Perceived future, hopes, and dreams Privacy and freedom
Self-image Life roles (e.g., parent, child, nurturer, chauffeur,
Secret life breadwinner, cook, lover)
Emotional self-control
Social losses
Family members Political and civic life
Friends Religious community
Spiritual losses
Trust in God Sense of wholeness
Sense of grounding or connection with Sense of purpose, value, worth
the transcendent Sense of hope and meaning
Common Reactions to Loss (Kubler-Ross, 1969; Worden, 1991; Kissane, 2005)

Physical
Tightness in chest or throat Breathlessness, feeling of shortness of breath
Hollowness in the stomach Weakness in the muscles
Oversensitivity to noise Lack of energy
Dry mouth Sense of depersonalization and disconnection
Cognitive
Disbelief Brief visual and auditory hallucinations of the
Confusion and difficulty in deceased
concentrating Transient thoughts of not wanting to go on living
Preoccupation with the deceased and or of not being able to make it through life
obsessive thoughts related to the without the deceased
death. Sense of the deceased’s Dreams about the deceased
presence Denial of the death and associated feelings of
grief
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Behavioral
Absent-mindedness Visiting places and carrying objects that remind
Social withdrawal the survivor of the deceased
Sleep disturbance Searching and calling out for the deceased
Restless overactivity Dreaming about the deceased
Crying Treasuring objects that belonged to the
Appetite disturbance deceased
Sighing High levels of fatigue with listlessness and
Avoiding reminders of the deceased apathy
Disorganization
Emotional
Sadness, frequently accompanied by Disconnection from self and others, isolation,
tears and sense of being lost
Shock and numbness Disconnection from the transcendent realm,
Anger at the deceased for dying, at spiritual disorganization, loss of faith or
God for allowing the death, at religious beliefs
physicians Sense of the world as unreasonable,
Guilt and self-reproach unpredictable, and dangerous
Anxiety and depression Sense of being broken, slit apart, and
Rapid mood changes arid irritability disconnected
Loneliness and a sense of Loss of purpose and direct ion
helplessness Loss of hope, trust, and meaning
Despair, anguish, and yearning for the Periodic thoughts of not wanting to go on living
deceased Relief and emancipation
Adjustment Disorders
Normal Adjustment
Adjustment or psychosocial adaptation to a severe illness is a process in which the individual

tries to manage emotional distress, solve disease-related problems, and gain control over disease-
related life events. Adjustment is not a single event, but a series of coping responses to multiple
tasks, crises, and challenges that vary with the clinical course of the disease. Common periods of
crisis and significant challenge include diagnosis, treatment (surgery, radiation, chemotherapy),
posttreatment and remission, recurrence, transition of focus from curative to palliative care,
bereavement, and survivorship—each involving specific coping tasks, existential and spiritual
questions, emotional responses, and other specific problems. Normal or successful adjustment is
when an individual is able to minimize disruptions to life roles, regulate emotional distress, and
remain actively involved in aspects of life that continue to hold meaning and importance.
Coping involves thoughts and behaviors an individual uses in his or her efforts to adjust. Coping
style refers to the most common, frequent, and long-term style of coping that an individual tends to
use in a variety of life situations. Coping style is related to one’s disposition and personality (e.g.,
introversion, extroversion, optimism, pessimism). Coping strategies are more situation-specific
coping efforts, eg. readjusting one’s daily schedule to adjust to the side effects of cancer treatment.
3 categories of coping strategies are: 1. Problem-focused (helps manage specific problems by
directly trying to alter problem situations), 2. Emotion-focused (helps regulate one’s degree of
emotional distress), and 3. Meaning-focused (helps understand why things happened and what
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impact the disease will have on one’s life). Persons who adjust well remain engaged, committed
and actively coping, and continue to find meaning and importance in their lives. Those who do not
adjust well become disengaged, withdrawn, and feel hopeless. The degree of engagement can be
a way to determine the degree of adjustment.
3 types of factors that influence psychosocial adjustment/adaptation:

1. disease-derived factors -- eg type of disease, its stage, and its prognosis, course of disease
2. patient-derived factors -- include 2 types of resources: intrapersonal coping resources and
interpersonal social support (e.g., family support); and stage of life (i.e., developmental tasks—
young adults may respond quite differently from older adults)
3. society-derived factors -- includes societal views of diseases such as cancer (e.g., stigma), the
influence society on issues such as availability of treatments, open versus closed discussion of the
illness, and popular beliefs about cause.
Adjustment During Periods of Crisis
Time of Initial Diagnosis

Patients may experience fear and anxiety when they have unexplained symptoms or when they are
undergoing diagnostic tests. At the time of diagnosis, their fears become reality, resulting in a
psychosocial and spiritual/existential crisis.
The normal response at the time of diagnosis consists of 3 phases:
1. Initial response – An initial response of disbelief, denial, and shock that usually lasts about a
week in patients who adjust well. Some patients will attempt to prove that the diagnosis is not true.
Many experience disbelief with inability to clearly process information. They may feel numb or in
shock, or as if, “This can’t be happening to me.” Significant distress can be problematic because
many times, immediately after informing patients of their diagnosis, physicians outline the
treatment options. Many patients may be unable to understand or remember important information.
The presence of others or other means of being able to review the information can be extremely
important (e.g., recording the discussion, a follow-up appointment for reviewing the treatment plan).
2. Dysphoria - A variable period of time (usually lasting 1–2 weeks) when the patient is slowly
accepting and acknowledging the reality of the diagnosis. Patients may begin to experience a
significant degree of distress in the form of depression, anxiety, insomnia, anorexia, poor
concentration, and varying degrees of inability to function in daily roles. Intrusive thoughts of illness
and death may occur very often and seem to be uncontrollable. As more information about
treatment options is provided, correctly processed, and understood, feelings of hope and optimism
begin to emerge more frequently through the dysphoria.
3. Longer-term adaptation - consists of the extended time during which more long-lasting and
permanent adjustment occurs. This period consists of weeks and months. Patients utilize a variety
of coping strategies and styles. There is no single best way to cope. Individual differences result in
a variety of coping styles and strategies.
Active Treatment Phase of the Illness

Individuals try to cope with the many stressors which may include anxiety and fears about painful
procedures, side effects (hair loss, nausea/vomiting, fatigue, pain), and disruptions to daily life.
Disruptions, including changes in life roles can be difficult. A cost-benefit approach (the benefit of
increased survival outweighs the short-term discomforts) may help individuals adjust well and
tolerate the stressors. Questions may include, “Will I survive this?” or “Will they get it all?” or “What
side effects will I experience?” Patients utilize coping styles and strategies to adapt. Many different
coping strategies are useful during this phase. Problem-focused coping—strategies designed to
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manage specific problem situations (e.g., fatigue, transportation to treatments, altered work
schedules, role changes)—are often utilized.
Completion of Treatments and Remission

This is a time of relief, but also distress, and a sense of vulnerability as active medical efforts to
fight the disease stop. Those who adjust well are able to balance their positive expectations with
their fears and anxieties. Many patients report enhanced anxiety and worry related to fears of
recurrence and decreasing frequency of medical surveillance via less frequent physician contacts.
Other adjustment issues include living with uncertainty, returning to previous life roles, and
hypervigilance to health concerns. During remission, normal anxiety intensifies as the dates of
follow-up appointments approach. Normal anxiety comes from concerns about recurrence and the
related emotional consequences (e.g., re-entry into the patient role and renewed feelings of loss of
control). Waiting for test results can be distressing.
Normal adjustment to posttreatment and remission involves utilization of a variety of coping
strategies. This phase often involves the use of emotion-focused coping strategies (those designed
to help regulate the normal emotional distress). Those who adjust well are more likely to be
comfortable expressing a wide range of both positive and negative emotions. Emotion-focused
coping strategies include honesty with one’s emotions, awareness and acceptance of one’s
feelings, an ability to articulate these feelings to others, a willingness to approach the task of
working through these emotions, and availability of support from others willing to listen and accept.
Recurrence and the Transition from Curative to Palliative Care

The transition from a curative to a palliative care plan is difficult for patients and families. It involves
renewed psychological distress, physical problems, and spiritual/existential distress, all of which
result in the suffering. Normal adjustment is characterized by initial shock, disbelief, and denial
followed by a period of significant distress (e.g., depressed mood, difficulty concentrating, and
intrusive thoughts of death). Normal adjustment may include periods of significant sadness and
crying, periodic feelings of anger at God or one’s perceived higher power, periods of withdrawal
and isolation, and even thoughts of giving up. However, this distress is followed by a gradual
adjustment over a period of weeks. These reactions do not necessarily indicate psychopathology;
their frequency of occurrence and duration tend to be shorter. Adjustment involves shifting
expectations from cure to healing (process of becoming whole again, of transforming one’s life in
the face of death). It involves maintaining hope in a variety of meaningful life activities (see section
on hope). Religion and spirituality may help maintain hope. Patients may use meaning-based
coping strategies and seek comfort in prayer and in their religious practices/rituals or spiritual
beliefs.
Survivorship
The adjustment from posttreatment to long-term survivorship is gradual and extends over many
years. Most patients adjust well, with some even reporting benefits (e.g., greater appreciation of
life, reprioritizing of life values, strengthening of spiritual or religious beliefs).
Although there are no significant differences in terms of psychological distress, marital and sexual
adjustment, social functioning, and overall psychosocial functioning between cancer survivors and
those who don’t have cancer, there are some common areas of distress experienced by many
cancer patients that are subthreshold. These includes anxiety about recurrence, sense of
vulnerability, lower sense of control, conditioned responses from reminders of chemotherapy
(smells, sights) that produce anxiety and nausea, posttraumatic stress-like symptoms (such as
persistent, intrusive thoughts, recurrent imagery associated with cancer treatments), and concerns
about body image and sexuality.
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Psychosocial Interventions for Distress
Psychosocial interventions include a variety of psychological and educational components. Typical
components include relaxation training, cognitive and behavioral coping strategies, cancer
education/information sessions, and group social support. Interventions have included various
combinations of these components, have varied in length (single session to multiple weekly
sessions), and have been administered in both individual and group formats. When psychosocial
interventions are offered to patients who are found to be experiencing distress (e.g., anxiety,
depression), the efficacy of the intervention is very strong. Thus, the overall positive benefit for
psychosocial interventions seems to be greater with those who seem to need it most.
Adjustment Disorders
Adjustment disorders are reactions to an identifiable psychosocial stressor (e.g., cancer diagnosis)
with a degree of psychopathology that is less severe than diagnosable mental disorders such as
major depressive disorder or generalized anxiety disorder and yet are in excess of what is
expected or result in significant impairment in social or occupational functioning. It is acute if it lasts
less than 6 months; and chronic if it lasts for 6 months or longer. Specific subtypes represent the
predominant symptoms and include: with depressed mood; with anxiety; with mixed anxiety and
depressed mood; with disturbance of conduct; with mixed disturbance of emotions and conduct
unspecified.
An adjustment disorder begins within 3 months of the onset of an identifiable stressor and lasts no
longer than 6 months after the stressor or its consequences have ceased. Patients may experience
a sequence of multiple, sequential stressors such as the diagnosis, the start of treatment, side
effects of treatment, conclusion of treatment, and relapse. It is not unusual to see a chronic
adjustment disorder that persists because of the presence of multiple, sequential stressors.
Chronic adjustment disorder may progress to become a more serious mental disorder (e.g., major
depressive disorder).
Management
Individual and group counseling and psychotherapy
These interventions have include both individual and group counseling. A cognitive-behavioral
approach is assumes that mental, emotional, and even physical symptoms partly stem from one’s
thoughts, feelings, and behaviors, resulting in poor adaptation. Interventions focus on a patient’s
thoughts, feelings, and behaviors with the goal of altering specific coping strategies and relieving
emotional distress.
Cognitive-behavioral interventions include a variety of approaches such as: relaxation training,
biofeedback, contingency management, problem-solving, cognitive restructuring, distraction,
thought stopping, coping self-statements, and mental imagery exercises.
Cognitive-behavioral approaches tend to be relatively short-term, brief interventions. Many
treatment protocols have combined these approaches into a multicomponent treatment strategy
designed to alleviate specific symptoms.
Pharmacotherapy
An initial trial of short-term counseling or psychotherapy designed to alter or eliminate the identified
stressor (and thus alleviate symptoms) should be tried before pharmacotherapy. If the adjustment
disorder progresses to a more severe mental disorder (e.g., major depressive disorder),
pharmacotherapy is warranted. or if the patient does not benefit from short-term psychotherapy,
adding an appropriate psychotropic medication for a brief period of time (e.g., 2-3 weeks for
antianxiety medications, 12 months for antidepressants) may facilitate the psychotherapy, allowing
the patient to better employ available coping strategies. The pattern of emotional or behavioral
symptoms will determine which type of psychotropic medication to consider.
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Anxiety
Anxiety is a reaction to a perceived threat such as a serious illness. It can occur more frequently as
the disease progresses. Anxiety can be caused by fears of death, uncontrolled pain and suffering,
isolation, dependency, and abandonment. It can be part of normal coping reaction. But anxiety that
is prolonged or very intense, can be an adjustment disorder. Other anxiety disorders such as
generalized anxiety, phobia, or panic disorder are less common. Stress experienced by the patient
may precipitate a relapse of pre-existing anxiety disorders. These disorders can negatively affect
quality of life. They can be disabling and can interfere with treatment. It interferes with the quality of
life, decision making, judgement and interaction with others Anxiety disorders require prompt
diagnosis and management. Acute anxiety lasts for a short period of time. Symptoms include
rapid heartbeat, elevated blood pressure, chest pain, shortness of breath, feelings of suffocation,
sweating or chills, dizziness, trembling, and nausea. Note: complains of chest pain, shortness of
breath and other similar symptoms without direct cause, such as anxiety can also be the warning
signs of a heart attack. Chronic anxiety lingers on, sometimes for weeks or longer, symptoms also
may include excessive, constant worrying, tension, insomnia, irritability, fatigue, difficulty
concentrating and inability to make decisions.
Symptoms
• Persistent tenseness, Inability to relax • Insomnia
• Worry, fearfulness, dread • Irritability, restlessness
• Mood changes • Inability to distract self and or be distracted
• Poor concentration, impaired ability to • Panic attacks
assimilate or recall information • Sweating, tremor
• Rumination, intrusive thoughts • Nausea, anorexia
• Indecisiveness • Shortness of breath, hyperventilation
Causes, Exacerbating, and Precipitating Factors
Situational
• Worry about family, finances; Isolation, inadequate support; Role loss, sense of uselessness
• Fear of the unknown, hospital, treatment; Uncertainty, lack of information, misinformation
Drug-related and other substances
• Drug-induced anxiety or anxiety-symptoms (stimulants, cocaine); medication side-effects
• Withdrawal states precipitated by abrupt discontinuation of benzodiazepines, alcohol, opioids
• Caffeine
Organic
• Uncontrolled pain and other symptoms; Weakness, fatigue; Insomnia, sleep problems
• Dyspnea, hypoxia, increasing respiratory effort; COPD, asthma, pulmonary congestion,
pulmonary embolism
• Sepsis, fever, hypotension, endocrine, metabolic
• Endocrine; hypo/hyperglycemia, hypo/hyperthyroidism, hypo/hyperparathyroidism, diabetes,
pheochromocytoma, carcinoid syndrome
• Cardiovascular; mitral valve prolapse, CHF, arrhythmia (eg paroxysmal atrial arrhythmia),
coronary artery disease
• Brain tumor, encephalopathy, organic brain disease; stroke, meningitis, seizure (temporal lobe)
• Adverse drug reactions such as akathisia or myoclonus
Psychological
• Denial, anger, guilt, fear; depression; delirium; adjustment and coping problems
• Preexisting anxiety disorders
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Fears, Existential, and Spiritual Factors
• Existential distress, hopelessness, meaninglessness
• Fear of menial impairment, Fear of loss of independence
• Fear of suffering and pain; Thoughts about death, about the past (wasted opportunities, guilt)
Anxiety Disorders Seen in Palliative Care
1. Adjustment Disorder
Maladaptive reactions to a stressor in excess of normal reactions. It may include severe
nervousness, worry, and impairment in normal functioning. Adjustment disorder can occur during
critical times such as the time of diagnostic work-up, diagnosis, or relapse. Most patients respond
to reassurance, relaxation techniques, low doses of short-acting benzodiazepines, and patient
support and education programs.
2. Panic Disorder
Intense anxiety, which may also be accompanied by severe somatic symptoms such as shortness
of breath, dizziness, palpitations, trembling, diaphoresis, nausea, tingling sensations, or fears of
going insane. Panic attacks can last for minutes to hours. A known history of panic disorder can
help with the diagnosis. Patients respond to benzodiazepines and antidepressants.
3. Phobias
Persistent fears or avoidance of an object or situation. Patients experience intense anxiety and
avoid potentially stressful situations.These may complicate medical management such as by
causing refusal of interventions or tests.
4. Obsessive-Compulsive Disorder
Characterized by obsessions (persistent thoughts, ideas, or images) and compulsions (repetitive,
purposeful, and intentional behaviors that a person performs to manage his or her intense
distress). The obsessive thoughts and compulsive behaviors interfere with a person’s normal daily
function. It is usually seen in patients who have a premorbid history of obsessive-compulsive
disorder. Patients may engage in compulsive behaviors that interfere with management. It is
usually managed with serotonergic antidepressant medications (selective serotonin reuptake
inhibitors) and cognitive-behavioral psychotherapy.
5. Posttraumatic Stress Disorder (PTSD)
Re-experiencing of a traumatic event with distressing recollections, dreams, flashbacks, or
hallucinations. A traumatic stressor may be the diagnosis of a life-threatening illness, the
experience of hospitalization and/or some painful intervention/s. PTSD may cause anxiety before
interventions such as surgery, chemotherapy, biopsy, or even dressing changes. Psychotherapy is
the treatment of choice. Anxiolytic medications may be given before the distressing intervention.
6. Generalized Anxiety Disorder
An ongoing, unrealistic, and excessive anxiety and worry about 2 or more life circumstances;
characterized by autonomic hyperactivity (heart palpitations, sweating, shortness of breath,
dizziness), motor tension (muscle tension, restlessness, easy fatigability), or vigilance in scanning
(irritability, exaggerated startle responses, feeling on-edge). For example, anxiety about not being
cared for and anxiety about exhausting ones finances, even if there are supportive carers and
adequate finances. Anxiolytics, some SSRI’s, and psychotherapy may be used.
7. Anxiety Disorder Caused by Other General Medical Conditions
Causes may include other medical factors such as poorly controlled pain, abnormal metabolic
states (e.g., hypoxia, hypercalcemia or hypoglycemia), hormone-producing tumors
(pheochromocytoma, thyroid adenoma or carcinoma, parathyroid adenoma, corticotropin-
producing tumors, and insulinoma), anxiety due to medications (corticosteroids; akathisia or motor
restlessness and subjective feelings of distress due to neuroleptics; thyroxine; anxiety, irritability,
and tremulousness due to bronchodilators and beta-adrenergic stimulants; antihistamines;
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paradoxical reaction to benzodiazepines), and substance withdrawal (from opioids,
benzodiazepines, barbiturates, nicotine, and alcohol). Acute anxiety may occur with acute medical
conditions such as myocardial infarction, infection, or pulmonary embolism. Patients who are
hypoxic can experience anxiety; they may be fearful that they are suffocating. Anxiety can worsen
pain, and anxiety must be addressed in order to adequately manage pain.
Management
Treatment of reversible causes may result in immediate symptom control. For moderate to severe
anxiety a combination of nonpharmacologic and pharmacologic management can be more helpful
than either one alone.
Nonpharmacological
Help patients develop coping strategies eg. confronting the problem directly; seeking further
information; being flexible and taking things as they come; viewing things as problems to be
solved, as a series of step-by-step tasks or as challenges; and learning to care for oneself and to
use resources and sources of support. Provide adequate information and support to the patient.
Consider combinations of cognitive-behavioral interventions, insight-oriented psychotherapy,
couple and family therapy, group therapy, self-help groups, crisis intervention, and behavioral
interventions (hypnosis, meditation, progressive relaxation, guided imagery, and biofeedback).
Pharmacological
Start with lower doses, and gradually increase the dose until symptom is controlled, or until
significant side-effects occur. Note that physical dependence may develop when some sedatives
(especially benzodiazepines) are taken regularly for more than 3-4 weeks). It may be possible to
minimize the need for sedatives, with the regular use of nonpharmacologic measures. For children
(especially < 6 yo), first consider nonpharmacologic interventions for mild to moderate anxiety.
Benzodiazepines: Decrease anxiety and reduce insomnia. Common side effects (eg sedation,
drowsiness, confusion, and motor incoordination) are dose dependent; titrate the dose gradually to
minimize them. Monitor cardiorespiratory status. Standard precautions, careful titration, and regular
assessment in patients with borderline respiratory function. For liver dysfunction, use short-acting
benzodiazepines that are primarily conjugated and excreted by the kidney (e.g., oxazepam,
temazepam, or lorazepam). Doses should be adjusted for renal dysfunction.
Diazepam A: 2-5 mg. C: 0.04-0.1 mg/kg PO/SC/SL/PR/IV qd-qid. Long Duration; steady plasma
concen tration.
Lorazepam A: 0.5—2 mg. C: 0.02-0.05 mg/kg max 2 mg/dose. PO/SL/PR/IM/IV (dilute if IV) qd-qid.
Medium Duration 6-8 hours. Useful in liver dysfunction. No active metabolites.
Alprazolam A: 0.25-0.5 mg PO bid-qid up to 4 mg/day. Other routes: SL/PR Short half-life.
Clonazepam A: 0.25-0.5 mg P0 bid-tid. C: 0.01-0.03 mg/kg/day in 2-3 divided doses. Long
Duration: 6-12 hours.
SSRI’s and similar agents Caution if used in children. Monitor closely for adverse behavioral
changes and suicidal risk. Begin with smallest dose for children, adolescents, elderly and frail
patients.
Citalopram 10-20 mg qd, max 60 mg/day, PO. Few drug interactions. Taper off when discontinuing.
Paroxetine. 10 mg qd, max 50 mg/day, PO. May help neuropathic pain.
Sertraline A: 50 mg qd, max 200 mg/day; C: 0.5-1 mg/kg qday PO.
Venlafaxine A: 75 mg, max 375 mg/day; C: 1-1.5 mg/kg qday PO. Inhibits serotonin, and at higher
doses, norepinephrine reuptake. May help neuropathic pain. Low doses sedating, higher doses
activating
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Other agents:
Hydroxyzine A: 25-100 mg PO/IM q4-6 hours. C: 0.25-0.5 mg/kg PO/IM q4-6 hours. IV/SC may
cause thrombosis, digital gangrene. Duration 4-6 hours.
Opioids: add or increase dose by q 4 hours by 50%
Phenobarbital A: 30-120 mg per day in 2-3 divided doses. C: 1-2 mg/kg bid-tid. PO/SC/IM/IV.
Monitoring: Phenobarbital levels, CBC, LFT. Duration: 4-10 hours.
Buspirone A: 10-15 mg/day C: 5-10 mg/day PO in 2-3 divided doses. Gradually increase if needed.
May be tried before using a benzodiazepine. Useful in those who may abuse benzodiazepines
(e.g., history of substance abuse). Can also augment SSRI’s for the treatment of anxiety and
depression.
For anxiety with paranoia, hallucinations, or severe anxiety.
Haloperidol A: 0.5-5 mg bid-tid and q 4 hours prn max 30 mg/day. C: 0.05 mg/kg/day in 2-3 divided
doses. PO/SL/PR/SC/IM/IV. Neuroleptic; antiemetic benefit.
Olanzapine A: 5-10 mg C: 6-12 yrs= 2.5 mg; >12 yrs= 5 mg PO/IM qday; may increase to bid
Ziprasidone A: 20 mg C: 6-12 yrs= 5 mg; >12 yrs= 5-10 mg PO/IM qday; may increase to bid
Risperidone A: 0.5-2 mg C: 6-12 yrs= 0.25 mg; >12 yrs= 0.5-1 mg PO qday-bid
Quetiapine A: 25-50 mg C: 6-12 yrs= 12.5 mg; >12 yrs= 25 mg PO qday-bid
Benzodiazepines
• Benzodiazepines enhance the chloride channel gating function of the inhibitory neurotransmitter
GABA. Receptors are mostly on postsynaptic nerve endings in the CNS. They undergo liver
metabolism via oxidation and glucuronide conjugation.
• Effects
CNS: Amnestic, anticonvulsant, hypnotic, muscle relaxant, and sedative effects in a dose
dependent manner. Reduced cerebral oxygen consumption, cerebral blood flow and ICP.
Cardiovascular: Mild systemic vasodilation, reduction in cardiac output. Increased effect in
hypovolemic and/or hypotensive patients, those with poor cardiac reserve, or if given with
opioids. Midazolam reduces blood pressure and cause systemic vasodilation more than
diazepam.
Respiratory: Mild dose-dependent decrease in respiratory rate and tidal volume. Increased
respiratory depression if given with opioids and/or patients with respiratory insufficiency or
pulmonary disease.
• Other important considerations
Diazepam IV/IM can cause pain during administration and thrombophlebitis (if it uses propylene
glycol as a solvent). Certain drugs can inhibit or reduce hepatic metabolism, eg, erythromycin,
cimetidine. Benzodiazepine may cause a psychotic episode in patients receiving valproate.
Heparin can increase diazepam concentration by displacing it from protein-binding sites.
Reversal of Benzodiazepine Effect

Flumazenil
• Flumazenil is a benzodiazepine antagonist that can rapidly reverse the effects of
benzodiazepines.
• Initial bolus: Adult: 0.2 mg, Child: 0.01 mg/kg IV over 30 seconds. Reversal of sedation and
respiratory depression usually occurs within 1-2 minutes. Repeat doses: Adult: 0.3-0.5 mg,
Child: 0.01-0.02 mg/kg may be given incrementally, up to 1 mg IV. If patient is unconscious and
poorly responsive to stimuli, consider higher doses (A: 0.5 mg C: 0.01 mg/kg, IV repeated up to
1.0 mg IV).
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• Effects may wane before the benzodiazepine. Monitor the patient and repeat doses as needed.
Duration of antagonism is brief (45-90 minutes) and may require repeated doses. Peak effect
occurs in about 10 minutes.
• Flumazenil may cause seizures, acute withdrawal, nausea, dizziness, agitation, or arrhythmias.
It is contraindicated in patients with tricyclic antidepressant overdose or elevated intracranial
pressure. It is relatively contraindicated in patients receiving benzodiazepines for seizures. Use
caution in patients who have received long-term treatment with benzodiazepines
Depression
Depression is a common illness and affects an estimated 25-35% of the medically ill. It is missed in
30-50% of these patients. Inadequately or inappropriately managed depressive disorders and
depressive symptoms lead to deterioration in the quality of life, prognosis, and functional status.
Identification of depression is vital, because treatment can be effective in many cases. Many
patients suffer from undertreatment when their depressive problems are mistakenly viewed by their
physicians as “understandable and normal” consequences of their illnesses, as just simple grief.
Patients and families also suffer the burden of interventions that are inappropriate in the palliative
care setting and the terminally ill. Depression needs to be addressed directly by the palliative care
specialist.
Various Causes of Depressive Symptoms
Psychiatric
• Depressive disorders include the following:
--- major depressive disorder (single episode, or recurrent)
--- dysthymia
--- adjustment disorder with depressed mood
--- depressive disorder due to medical condition
--- depressive disorder that is substance induced
--- depressive disorder, not otherwise specified (minor depressive disorder)
• Adjustment disorder with depressed mood (reactive depression) is a very common depressive
disorder seen in palliative care
• “Minor depression” which manifests fewer depressive symptoms than a major depressive
disorder (such as dysthynmia, and depressive disorder NOS); and depressive disorders that are
directly due to the patient’s general medical condition or medication/s, are also common in
palliative care patients.
Medical
Organic Mood Syndromes or Mood Syndromes Related to Medical Condition (MSRMC), are mood
syndromes that are due to organic or medical cause/s. Suspect MSRMC if there are findings of
prominent cognitive abnormalities or apathy. Consider diagnostic tests to determine the presence
of medical/organic causes. Treatment of reversible causes results in symptom improvement.
Pharmacotherapy may be more advantageous than psychotherapy alone.
• Poorly controlled pain or other distressing physical symptoms
• Drugs (e.g., opioids, corticosteroids, diazepam, interferon alpha, l-asparaginase, procarbazine)
• Tumor involvement of central nervous system
• Infections (e.g., Epstein-Barr virus)
• Metabolic disturbances (e.g., abnormal levels of sodium or calcium)
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• Nutritional problems (e.g., anemia, deficiencies in vitamin B12 or folate)
• Endocrine disorders (e.g., hypothyroidism, adrenal insufficiency)
• Neurological disorders (e.g., Parkinson’s disease)
• Sleep disorders and sleep deprivation
Psychological, Social, and Spiritual
• Grief and Bereavement; guilt; fear of expressing anger
• Concern about family distress; overwhelming financial or family distress
• Existential distress; hopelessness and meaninglessness
• Spiritual distress
Evaluation of Depression
Symptoms
Psychological
• Depressed mood: Depressed mood most of the day or nearly everyday
• Anhedonia: Diminished interest or pleasure in all or almost all activities.
• Psychomotor problems: Psychomotor retardation or agitation.
• Excessive guilt: Feelings of worthlessness or excessive guilt.
• Poor concentration: Diminished ability to concentrate and think.
• Suicidal ideation: Recurrent thoughts of death and suicide.
• Lack of energy: Fatigue and loss of energy.
• Weight change: Significant weight loss or gain.
• Sleep disturbance: Insomnia or hypersomnia.
• A major depressive disorder involves at least 5 of the above symptoms over a 2 week period
(including depressed mood and/or anhedonia)
• Dysthymia involves 3-4 of the symptoms over a longer period of time (2 years)
• A depressive disorder, not otherwise specified includes: minor depressive disorders which
involve 3-4 of the symptoms over a period of less than 2 years; and recurrent brief depression
which are brief recurrent episodes- each episode involves at least 5 symptoms in less than 2
weeks duration.
• Depressive symptoms can also be due to the patient’s medical condition/s, medication/s; as
well as substance misuse.
Somatic
Somatic signs and symptoms need to be carefully evaluated in diagnosing depression in terminally
ill patients, because the illness itself can produce symptoms of fatigue, loss of energy, anorexia,
insomnia, and other symptoms.
Some questions that may be used to briefly assess for depression
Coping and Adjustment: How well are you coping with your illness? Well? Poorly?
Mood: How is your mood since diagnosis? During treatment? Down? Blue? Do you cry
sometimes? How often? Only when you’re alone?
Anhedonia: Are there things you still enjoy doing, or have you lost pleasure in things you used to
do before you were sick?
Hopelessness: How does the future look to you? hopeful? hopeless?
Helplessness: Do you feel you are still in control, or is your care totally under others' control?
Guilt: Do you worry about being a burden to family/friends?
Worthlessness: Do you feel others might be better off without you?
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Pain and other physical symptoms: Do you have pain that isn't controlled? Is there anything that
gives you a lot of discomfort?
Fatigue: How much time do you spend in bed? Feel weak? Fatigue easily? Rested after sleep?
Insomnia: How is your sleeping? Trouble going to sleep? Awake early? Often?
Anorexia: How is your appetite? Food tastes good? Weight loss or gain?
Libido: How is your interest in sex? Extent of sexual activity?
Psychomotor slowing: Do you think or move more slowly than usual?
Center for Epidemiologic Studies Depression (CES-D) Boston Short Form

Ask: Did you experience the following much of the time during the past week?
Yes No Item
X I felt depressed.
X I felt that everything I did was
an effort.
X My sleep was restless.
X I was happy.
X I felt lonely.
X People were unfriendly.
X I enjoyed life.
X I felt sad.
X I felt that people disliked me.
X I could not get going.
Scoring: The user sums the scores of all Items. The items marked “no” are scored in reverse. A
score >= 4 indicates a high probability of depression. A score < 3 indicates a low probability of
depression. (Irwin et al, 1999)
Laboratory tests
TSH, CBC, electrolytes (including Ca), kidney and liver function tests, urinalysis
Management
The treatment plan depends on the severity and duration of the depressive symptoms and
functional impairment. Major depression responds well to a combination of pharmacotherapy and
psychotherapy or supportive counseling.
• Establish good rapport.
• Assess thoroughly and regularly.
• Evaluate and treat for underlying organic factors if possible.Treat reversible causes. Manage
pain. Relieve other symptoms that cause discomfort.
• Differentiate normal sadness and grief from those indicating a depressive disorder.
• Assess for the risk of suicide.
• Assess for substance abuse or dependence.
• Provide supportive psychotherapy for the patients. Reduce sense of isolation.
• Family intervention to support the patient, family, and relatives.
• Cousel the patient and family that depression is an illness and not a sign of weak character.
Depression can be treated and depressive symptoms may improve or resolve with treatment.
• Use antidepressants and other medications and other treatment modalities.
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Nonpharmacological Management
• Use a flexible, individualized counseling approach using principles and methods from different
approaches. Try to deliver a total of at least 7-8 hours (7 or more sessions) of counseling and
therapy to achieve better results. Goals of therapy include reducing emotional distress,
improving morale, coping, sense of control, self-esteem, and problem resolution. During the
terminal phase, focus gradually shifts to existential and spiritual issues.
• The patient’s clinical status, ability to participate in interpersonal therapy and counseling
sessions, prognosis and life expectancy should be consider in determining the appropriate
approach and interventions. These factors, as well as each family member’s ability to
participate in family therapy and counseling sessions, should be considered when determining
the appropriate family focused approach and/or interventions.
• Prolonged interventions (eg weekly sessions for 20 or more weeks) that require intensive
patient and/or family participation that are common in clinical psychology and psycghiatric
practice, may not be appropriate for many cases in palliative medicine- especially for patients
who have limited abilities to participate in intensive sessions, and/or have very limited life
expectancies.
• If depression is severe and/or non responsive to nonpharmacological measures consider
pharmacological management. Compared to depressed patients who do not have any other
severe disease, counseling and other non-pharmacological psychosocial interventions for
depression may not be as effective in patients with advanced diseases- including cancer. In
moderate to severe depression, a combination of pharmacological and non-pharmacological
interventions should be used.
• Psychoeducation: Educate the patient and family about the disease, treatment, and
psychosocial reactions and problems that may occur during the course of the disease.
Encourage discussion about the disease, its associated problems, and how they impact family
dynamics and function. Facilitate positive adaptation and coping. Teach symptom management
and coping skills. Encourage activity, but also teach energy conservation measures to prevent
fatigue.
• Behavoral therapy: Relaxation training using progressive muscular relaxation, guided imagery,
massage, hypnosis, meditation, exposure, systematic desensitization, and activities.
• Supportive measures involve consistent emotional and social support. Establish good
trusting relationships between the palliative care team, and the patient and family. Social
support is provided by the palliative care team, family, friends, community, and religious groups.
Active listening and good communication builds trust and acceptance. Allow expression of
feelings in a non judgmental setting. Reduce the fear of appearing weak by acknowledging and
legitimizing the difficulty of the situation. Help in the task of coping. Provide reassurance and
maintain hope. Consider supportive-expressive group therapy. Assist family in minimizing family
conflicts, and help esolve them. Identify and manage family members who also need
psychosocial help.
• Cognitive therapy addresses the negative thought patterns or diastortions of thought that can
cause or exacerbate depressive problems. Correct misconceptions and exaggerated fears and
worries. Different possible explanations and outcomes are discussed. Increase the patient and
family’s awareness of these negative thought patterns. Identify the factors and sequence of
thoughts that led to the negative and distorted conclusions, and how they cause, reinforce, and
worsen depressive feelings. Teach the patient and family ne strategies to prevent and stop
these negative thought patterns, and substitute more positive thought patterns. This approach
empowers the patient and family, and gives them control over the depression and problem
situations. Consider asking the patient to keep a daily log of negative thoughts, along with good
things that happened. Regularly review the log and address the negative thought patterns.
• Short-term psychotherapy. May use a crisis intervention model, and supportive techniques.
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• Electroconvulsive therapy is a relatively safe, and effective treatment. Useful for patients who
have significant contraindications to or are not responding to antidepressants. Also for
depression with psychotic or suicidal features.
Pharmacological Management
• In general, most antidepressants are equally efficacious if given at adequate doses, being 60-
70% efficacious in major depression over a four week period. All have a delayed onset of
clinical effect and are less efficacious in adjustment disorders. Consider lower starting doses,
and increase the dose more slowly, while monitoring for any side-effects. Patents may respond
to lower maintenance and therapeutic doses. If the the response is inadequate (after the dose
has been adequately titrated and enough time was allowed to observe for any response), then
add a second drug, or wean off the drug and start a different drug.
• A psychostimulant may be used if more immediate effects (< 4 weeks) are needed, especially in
patients with very limited life expectancy, and/or severe symptoms.
• Other medications may be added to the antidepressant regimen to address associated
problems, including: psychosis and/or delirium (neuroleptics), anxiety (anxiolytics, sedatives),
insomnia (short-acting sedative-hypnotics), hypothyroidism (thyroxine), and others.
• Since severe depression is a risk factor for suicide, monitor patients closely, and write
prescriptions for small quantities of medications in order to avoid suicidal overdose.
• Suicide Risk in Patients Treated with Antidepressant Drugs (Simon 2006; Hammad et al 2006)
--- There is an ongoing concern that antidepressant drugs are associated with an increased
risk of suicidal ideation and behavior (suicidality) in young patients. In 2003-2004, after
comprehensive reviews of clinical trials on the use of antidepressants, the Food and Drug
Administration (US) and other similar international bodies, have issued public warnings on the
possible increased risk of suicidality in children and adolescents treated with SSRI
antidepressant drugs. In 2005, the warnings were extended to cover all antidepressant drugs;
and in 2006, there were recommendations to extend the warnings to include young adults up to
the age of 25 years.
--- A recent reviews showed that the risk of suicidal ideation, suicidal behavior, or suicide
attempt is twice as high among children and adolescents receiving an SSRI or similar
antidepressant drugs (4%) as compared to those receiving placebo (2%). In contrast, several
clinical studies have also shown that suicidality and the risk of suicide attempts decrease
significantly when patients are treated for major depression with antidepressants +/- counseling.
--- Recommendations for antidepressant use in children and adolescents:
-- The efficacy of the drugs concerned is well established only for children and adolescents
with a major depressive episode; attempt to clearly establish the diagnosis, and be careful when
using the drugs for other depressive disorders.
-- The efficacy of fluoxetine in children and adolescents is the most well-established;
fluoxetine should be the drug of first choice, as much as possible.
-- Depression itself can increase suicidality and suicidal attempts are unpredictable (whether
or not the patient is on antidepressants). All patients and families should be adviced and
warned about the risk of suicide and its unpredictability. They should also be adviced to call the
specialist as soon as possible if there are any changes that might indicate suicidality.
-- All patients should be followed up regularly, and monitored very closely, while they are
being treated for a majopr depressive episode- and especially if antidepressant medications are
being used.
Selective Serotonin Reuptake Inhibitors (SSRIs)

• Less sedating and fewer side effects (eg cardiac arrhythmias, hypotension, and anticholinergic
effects) than tricylics.
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• Temporary nausea and anxiety may occur. Usually resolves in a few weeks- advice the patient.
• In general, may be less helpful in treating neuropathic pain than tricyclics.
• Less problematic and fatal in overdose compared to tricyclics.
• Side effects may include nausea, vomiting, diarrhea, somnolence, insomnia, headache,
confusion, dizziness, asthenia, and sexual dysfunction.
• There is an ongoing concern about a possible increased risk of suicidal thoughts and behavior
in children and adolescents.
• More sedating SSRI: paroxetine, fluvoxamine, sertraline
• More energizing/stimulating SSRI: fluoxetine
Mixed Action Antidepressants

• Have different mechanisms of action and different side effect profiles compared to SSRIs.
• These include:
--- Dopamine and Norepinepohrine Reuptake Inhibitors: eg Bupropion
--- Selective Serotonin and Norepinepohrine Reuptake Inhibitors: eg Nefazodone, Venlafaxine
--- Selective Serotonin Reuptake Inhibitors and a2 Receptor Antagonists: Mirtazapine
Tricyclic Antidepressants (TCA)

• Significant anticholinergic side-effects include dry mouth, blurred vision, constipation, and
urinary retention. May cause sexual dysfunction such as decreased libido, and erectile
dysfunction. Avoid in narrow angle glaucoma and prostatic hypertrophy. Some patients develop
tolerance to side effects; discontinue TCA if they remain problematic.
• May cause postural hypotension and cardiac arrhythmias. Contraindicated in patients with
cardiac conduction defects, eg bundle-branch disease and second- or third-degree heart block.
Obtain an ECG in patients with a history of heart problems.
• May help with insomnia and neuropathic pain.
• Use low initial doses, increase gradually, monitor for side effects.
• Therapeutic response at lower doses in the elderly and patients with advanced disease.
• Toxic on overdose. Overdose is a medical emergency.
• If anxiety or insomnia is present: use sedating antidepressants (e.g., amitriptyline, doxepin)
• If psychomotor retardation is present: use less sedating drugs (e.g., desipramine)
• If urinary retention, benign prostatic hypertrophy or poor intestinal motility present: use a drug
with fewer anticholinergic effects (e.g., desipramine, nortriptyline)
Psychostimulants
• Rapid onset of anti depressant action
• Reduces sense of fatigue; “energizing”; promote a sense of well-being; improves concentration
and attention; may stimulate appetite
• Given during the waking hours (morning and noon/ early afternoon)
• Reduces opioid-induced sedation; Can potentiate analgesic effects of opioids.
• Potential unwarranted side-effects: anxiety, insomnia, nightmares, tremor, tachycardia,
hypertension, seizure, confusion, delirium, psychosis, paranoia, tolerance
• Dosage: Give test dose at 6-9 a.m.; reassess patient in 2 hours; discontinue medication if
unwarranted side effects occur
• Contraindications: hyperactive delirium or severe anxiety, ischemic heart disease, arrhythmia
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Selective Serotonin Reuptake Inhibitors (SSRIs)
Citalopram 10-20 mg qd, max 60 mg/day. Few drug interactions. Taper off when discontinuing.
Paroxetine. 10 mg qd, max 50 mg/day. May help neuropathic pain. Sedating.
Fluoxetine A: 10-20 mg qd, max 80 mg/day C: 0.2 mg/kg qday. May be stimulating or anorexic.
Long half life.
Sertraline A: 50 mg C: 1 mg/kg PO, qday; gradually increase up to A: 200 mg/day C: 4 mg/kg/day.
For the frail or elderly, begin with 25 mg q day.
Fluvoxamine 50 mg qd, max 300 mg/day. Sedating.
Dopamine and Norepinephrine Reuptake Inhibitor
Bupropion A: 100 mg bid, max 450 mg/day; C: 0.5-1 mg/kg/dose or 25-50 mg bid. Norepinephrine,
dopamine, and serotonin reuptake inhibitor. Not associated with significant reduction of libido and
weight gain. Useful for low energy. Not very effective for anxiety. Contraindicated in patients with
CNS involvement, history of seizure, and conditions or drugs that predisposes to seizure; and
eating disorder (eg bulimia). Side-effects: insomnia, confusion, weight loss, headache, anxiety
Selective Serotonin Reuptake Inhibitor and Presynaptic a2 Receptor Antagonist
Mirtazapine A: 7.5-15 mg qday, max 45 mg/day; C: 0.2-0.3 mg/kg qday. Increases norepinephrine
and serotonin levels by blocking presynaptic a2 receptors. Blocks post-synaptic serotonin
receptors. Sedating, anxiolytic, antiemetic, appetite stimulating. May be given at night if sedating.
Less sedating at higher doses. Side effects: weight gain, dizziness, dry mouth, constipation,
edema, hypertension, orthostatic hypotension. May help with poor appetite, and weight loss.
Selective Serotonin Reuptake Inhibitor and Norepinephrine Reuptake Inhibitors
Venlafaxine A: 75 mg qday-tid, max 375 mg/day; C: 1.5 mg/kg qday-bid. Serotonin, norepinephrine
reuptake inhibitor. Inhibits serotonin, and at higher doses, norepinephrine reuptake. Also weakly
inhibits dopamine reuptake at higher doses. May help neuropathic pain. Also used for hot flashes.
Low doses sedating, higher doses activating. Side effects: insomnia, constipation, nausea,
headache, sexual dysfunction; may increase blood pressure at higher doses-monitor BP regularly.
Nefazodone A: 50 mg bid, max 300 mg bid; C: 1 mg/kg bid. Serotonin antagonist and reuptake
inhibitor. Norepinephrine reuptake inhibitor. No significant anticholinergic side-effects. Inhibits liver
cytochrome P450; avoid with methadone.
Tricyclic Antidepressants
Amitriptyline A: 10-75 mg HS, max 300 mg/day. C: 0.1-0.5 mg/kg HS, max 2 mg/kg/day. Sedating.
Analgesic effects are well established and studied.
Desipramine A: 10-75 mg HS, max 300 mg/day. C: 1-2 mg/kg/day, max 5 mg/kg/day. Less
sedating, fewer side-effects than amitriptylline.
Nortriptyline A: 10-50mg HS, max 150 mg/day, usual maintenance dose 75 mg/day. C: 20-25
kg=10 mg/day, 25-35 kg=10-20 mg/day, 35-54 kg=25-35 mg/day. Less sedating. Less
anticholinergic.
Doxepin A: 10-75 mg HS, max 300 mg/day. C: 10-25 mg HS. Sedating.
Imipramine A: 10-75 mg/day C: 0.2-0.5 mg/day qHS or divided TID, gradually increase as needed
Psychostimulants
Methyiphenidate or Dextroamphetamine. A: 2.5-5 mg am and noon, max 60 mg/day. C: 2.5 mg am
and noon max 30-40 mg/day.
Pemoline A: 18.75 mg am and noon, max 112.5 mg/day, typically no more than 75 mg/day is
required. C: 0.5 – 1 mg/kg/day. Use with caution in patients with liver disease.
Modafinil A: 50 mg am, max 400 mg. Less frequent side effect.
Benzodiazepines. May be given with an antidepressant when significant unresolved anxiety
coexists with depression. Taper off slowly if possible to avoid withdrawal.
Alprazolam A: 0.25-1 mg bid-tid C: 0.01 mg/kg bid-tid. Moderate half-life. Taper gradually.
Diazepam A: 2-5 mg C: 0.04-0.1 mg/kg PO qday-tid. Long half-life. Taper gradually.
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Neuroleptics. May be given with an antidepressant for depression with significant anxiety,
agitation, or psychotic features; and for complicated depression and bipolar disorder. Less likely to
cause respiratory depression or confusion than benzodiazepines.
Haloperidol A: 0.5-5 mg bid-tid and q 4 hours prn max 30 mg/day. Child: 0.01-0.05 mg/kg/day in 2-
3 divided doses and q 4 hours prn. PO/SL/PR/SC/IM/IV. Neuroleptic; antiemetic benefit.
Risperidone A: 0.5-2 mg C: 6-12 yrs= 0.25 mg; >12 yrs= 0.5-1 mg PO qday-bid
Quetiapine A: 25-50 mg C: 6-12 yrs= 12.5 mg; >12 yrs= 25 mg PO qday-bid
Suicide
Sadness is a normal response to the realization that one is seriously ill. However, as many as
twenty percent of seriously ill patients go beyond this normal response and develop major
depression. Major depression is far more than a simple mood problem; it also influences reason
and the intellect. As it takes hold, it steadily infiltrates and affects the patient’s sense of reason.
Everything is seen with sadness and despair. Sadness may turn to emptiness and emptiness may
turn to pain. There are seemingly fewer and fewer options. Toward the end, the patient can see no
way out and all hope is lost. About ten percent commit suicide.
Risk Factors for Suicide in Patients in Palliative Care

(Breitbart et al, 2005; Massie et al, 1994; Cherny et al, 1994)
Risk factors related to disease
• Uncontrolled pain or other symptoms; exhaustion, fatigue
• Advanced disease-heart, lung, kidney, neuromuscular, etc.-and poor prognosis
• Pharyngeal, lung, gastrointestinal, urogenital, breast, other advanced cancer
• Advanced HIV disease
Risk factors related to mental status
• Depression; Sense of helplessness and hopelessness
• Delirium; Loss of inhibition; Psychotic features (i.e., hallucinations and delusions)
• Loss of control, impulsiveness; Irrational thinking
• Persistent suicidal ideation and suicide plans
Risk factors related to personal and family history
• Preexisting psychiatric disease (depression, anxiety, psychotic disorders)
• Substance abuse (alcohol, illicit drug use)
• Recent loss (spouse or friends), divorced, separated, widowed
• Lack of social supports
• Older age, male sex (male:female ratio 3:1 for completed suicide)
• Prior suicide attempts, family history of suicide; access to firearms and other means
• Severe existential or spiritual distress, hopelessness; Fear of “being a burden”
Assessment. In general, asking patients about suicide does not increase the risk of suicide.
Ask all patients at risk, especially if depressed, about suicidal thoughts, and history. Assess the
degree of intent, the plan and urgency to proceed. Ask “People who feel depressed and tired of life
think about wanting to die. Some even think of ways to make it happen. Have you thought about
these?”
Principles of Management. Not all suicides are preventable, but many suicides can be
prevented by screening and managing patients at risk. Aggressively manage any patients with
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suicidal ideation that is beyond thoughts of a passive death. Get psychiatric help if needed.
Patients with a clear suicide plan and means should be commited in an appropriate facility.
Involuntary commitment may be needed if the patient is uncooperative, or incompetent due to his
impairment. Know the involuntary commitment laws and policies in your institution and place of
practice.
Anger
Anger is commonly encountered during the care of seriously ill patients and their families. The
palliative care specialist should try to help the patient and/or family resolve their anger.
The setting
If it is possible, try to choose the right setting. If the setting seems particularly awkward (eg. a busy
corridor) then as the discussion progresses it is reasonable to suggest an alternative, more private
venue.
Acknowledge the anger

Acknowlege it, eg. “I can see that you are angry. How can I help?” Even if the anger seems
obvious, acknowledging it gives a clear message that you have noticed the anger, that you care,
and that you seriously want to help. Offering to help can begin to soothe the anger. Patients and/or
family may openly and outwardly express anger, and this is called Active Anger. Others exhibit a
kind of controlled anger, called Passive Anger; and you may have to ask by saying, “I get the
feeling that you’re angry, can we talk about it?”
Be aware of your reactions to anger

It is normal to be emotionally affected when dealing with an angry person. Some providers feel
irritated; and they need to suppress this irritation to avoid escalating the anger. Others become
shocked; and they need to be assertive in order to help the angry person effectively. If your
reactions make it difficult for you to help an angry person (eg. you become too angry or withdrawn
to help), ask someone else to see and counsel the angry person.
Explore the causes of anger

Explore and discuss the cause eg. “What made you feel angry?” Clarify the degree and severity of
the anger eg. “On a scale of 0 to 10, how angry have you been?” Common causes of anger
include: underlying fear (eg fear of death, fear of the unknown, fear of being in pain and/or
suffering, fear of abandonment, fear of losing control), “rational anger” (in response to a reasonable
cause- eg impolite treatment), inherent personality (eg personality that is prone to anger and
mistrust), psychosocial problem, delirium/ confusion, dementia, organic brain lesions (eg tumor),
and other causes.
Determine the direction of anger

Internal anger is directed towards oneself (eg “I didn’t take care of my health” “I smoked too much”
“I wont be able to help by family”). This is can be related to, and causes feelings of fear, guilt,
anger, depression, anxiety, and other problematic emotions. External anger is directed outward at
others (eg physicians, nurses, family members, and even God). Internal anger, and feelings of
guilt, can also be displaced towards others.
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Defuse the anger
Attempt to defuse the anger after you have acknowledged it. Most people want to know that you
want to listen and help. Exploring the cause of the anger helps to defuse it. They may want help
with getting something done or help with information. An offer of help is not usually refused.
Apologising
When the anger is directed at you or your team, and if that anger is appropriate, then it is
appropriate to apologize. For example: “I’m sorry you were kept waiting for 6 hours- it would make
me angry too.” When the anger is about the behavior of another health professional, you can show
your concern, for example, “I can see why you’re angry.” Then suggest that they speak or write to
the individual their concerns.
Escalating Anger
This is an important warning sign. If anger escalates:
• Position yourself by the nearest exit if there is a risk of assault.
• Acknowledge the escalating anger eg. “I can see this has made you very angry.”
• Set limits eg. “I want to help you, but your anger is beginning to make me feel uncomfortable. If
you don’t feel you can control your anger I wouldn’t feel comfortable continuing.” Giving them 10
minutes to calm down may allow you to start again from the beginning eg. “How can I help?”
• If the person cannot accept the limits, end the interview and leave immediately to avoid being
assaulted.
Persisting anger
There are several reasons for persisting anger:
• Sometimes this is a person’s normal behavior.
• There may be a clinical depression or other psychological problems.
• Unrealised ambitions eg. seeing children grow up.
• Loss of control because of weakness or immobility.
• Spiritual anger
Psychosocial Approaches and Interventions
• Psychosocial interventions done in palliative care can involve the patient/individual,

couple/marital, family, or a group of people.
• Use a flexible and integrated psychosocial management approach using principles and
methods from different approaches.
• Determine the goals of therapy, and your target outcomes. Goals of therapy may include:
reducing emotional distress, improving morale, coping, sense of control, self-esteem, and
problem resolution, and others.
• During the terminal phase, focus gradually shifts to existential and spiritual issues.
• The patient’s clinical status, ability to participate in interpersonal therapy and counseling
sessions, prognosis and life expectancy should be considered in determining the appropriate
approach and interventions. These factors, as well as each family member’s ability to
participate in family therapy and counseling sessions, should be considered when determining
the appropriate counseling approaches and interventions.
• Prolonged interventions (eg weekly sessions for 20 or more weeks) that require intensive
patient and/or family participation that are common in clinical psychology and psycghiatric
practice, may not be appropriate for many cases in palliative medicine practice- especially for
74
patients whose illness limits their ability to participate in intensive sessions, and/or whose life
expectancies are very limited.
• Counseling approaches and interventions that are aimed at resolving problems and issues as
quickly as possible prior to the patient’s death are usually focused and relatively brief. Most
focussed brief counseling methods and interventions are characterized by: a fixed duration or
time limit, specific treatment goals; and a more active role for the palliative care specialist/
counselor. They usually require: more active supervision, more structured sessions, good
therapeutic alliances, quickly dealing with tranferences, monitoring for and limiting regressions,
and using homeworks/assignments.
• When appropriate, pharmacological management together with nonpharmacological
interventions.
• Like pharmacological interventions, psychosocial interventions and counseling are not always
successful. The patient and/or family’s response should be regularly monitored; and the
approach and intervention should be modified or changed if needed.
• Like pharmacological interventions, psychosocial interventions and counseling can have
adverse effects (or side-effects). The patient and/or family should be regularly monitored for any
adverse effects (eg increased depression or anxiety, worsening family problems, increased
conflicts, new or worsening psychosocial/existential/or spiritual distress); and the approach and
intervention should be modified or changed if needed.
Basic Effective and Compassionate Communication and Counseling

(See chapter on Communication and Counseling)
Patient and Family Education

Psychoeducational interventions which involve the education and sharing of information with an
individual (eg patient, family member) or group (eg family, support groups) are one of the most
important and most commonly used interventions. Many patients and families do not have
adequate knowledge and/or have misconceptions about physical and emotional discomfort and
their management. Psychoeducation should stress that most of these discomforts can be
adequately managed. Oral and written information should include: basic concepts and principles,
instructions in monitoring and when to call care providers, and assessment and treatment -
including medications and other interventions used to control symptoms. Correct any
misconceptions and address barriers to effective symptom management.
Relaxation Techniques and Imagery

• Deep Breathing
Breathe in slowly and deeply.
As you breathe out slowly, feel yourself relax, feel the tension leave your body.
Now breathe in and out slowly and regularly, at whatever rate is comfortable for you.
To help focus on your breathing and to breathe slowly and rhythmically:
(a) breathe in as you say silently to yourself, ‘in, two, three”; or
(b) breathe out as you say silently to yourself, “out, two, three”, or
(c) each time you breathe out, say silently to yourself a word such as “peace” or “relax.”
Continue for 10 to 20 minutes.
End with a slow deep breath. As you breathe out say to yourself, “I feel alert and relaxed.”
• Progressive Muscular Relaxation (PMR)
Progressive muscle relaxation (PMR) involves systematically tensing up each group of muscles
for 8-10 seconds, then letting them relax.
Sit quietly and comfortably. Close your eyes. Slowly inhale and exhale.
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Bend your right hand back at the wrist, hold the tension. Now relax. Do the same with your left
hand. Hold the tension. Now relax.
Tighten both hands into fists. Hold the tension. Feel it spread up your arms. Now relax.
Your arms have started relaxing. If you don’t move them, they will continue to become more and
more relaxed, and you can forget about them.
Next, turn your attention to your face. Raise your eyebrows up as far as you can. Hold the
tension. Now relax. For your eys, sqeeze your eyelids tightly together. Hold the tension. Now
relax.For your jaw, bite down and clamp your teeth together. Feel the tension allow your jaw.
Now relax. Your face has started relaxing.
For your neck, bend your neck forward as if trying to touch your chin to your chest. Feel the
tension along the back of your neck. Now relax.
For your shoulders, raise them up as high as you can, feel the tension. Now let them drop all at
once and relax. For your torso try to touch your shoulder blades together by pulling your arms
back. Hold it. Now relax.
For your abdomen, tighten your abdominal muscles as much as you can. Hold it. Now relax.
For your back, bend forward and arch your back. Feel the tension along your spine. Now relax.
With your feet flat on the floor, press down, and feel the tension spread up your legs. Now relax.
For your right thigh, raise your leg upin front of you. Feel the tension build. Now relax. Now do
the same for your left thigh and relax.
Finally, for your feet, bend your toes up, and feel the tension around the feet and ankles. And
relax.
• The Relaxation Response
Developed by Dr. Herbert Benson of Harvard University, and and described in a book of the
same name in 1975.
Sit quietly and comfortably.
Close your eyes.
Start relaxing the muscles of your feet, and slowly work up your body, to your legs, abdomen,
chest, shoulders, neck, and head.
Option 1: Focus your attention on your breathing.Breathe in deeply. Now let your breath out.
Count your breaths, and say the number of the breath as you let it out. (this focuses your mind
and helps you avoid distraction).
Option 2: Pick a focus word (eg “peace”), short phrase (eg “God is with me”), or prayer that you
strongly believe in. Breath slowly and naturally, and say your focus word, phrase, or prayer
silently to yourself as you exhale.
Relax. Don’t worry about how well you’re doing. When other thoughts enter your mind, hust say
to yourself, “Oh well,” let go of the thought, and continue with your relaxation.
Continue for 10 to 20 minutes.
• Simple touch, massage, or warmth for relaxation
• Brief touch (eg. holding the patient’s hand or briefly stroking the shoulder)
• Feet soak in a basin of warm water, or feet wrap in a warm, wet towel
• Warm baths soothes and relaxes the muscles; and are very relaxing to many people.
• Massage may consist of whole body massage or be restricted to head/neck, back, feet, or
hands. If the patient has concerns about modesty or cannot move or turn easily in bed, consider
massaging the hands and feet.
Use a warm lubricant. (A small bowl or bottle of oil or hand lotion may be warmed briefly in a
bowl of hot water.)
Massage for relaxation is usually done with smooth, long, slow strokes. Try varying degrees of
pressure along with different types of massage (e.g., stroking, kneading, and circling to
determine which type the patient prefers).
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• Suggestive (Autogenic) Relaxation
This technique uses verbal suggestions to promote physical relaxation.
Relax. Close your eyes and concentratate on your breathing.
Slowly say to yourself:
“My hands and arms are warm and relaxed, and I am at peace and rested” (5 times).
“My legs and feet are warm and relaxed, and I am at peace and rested” (5 times).
“My breathing is even and deep” (10 times).
“My heartbeat is calm and regular” (10 times).
“My forehead is cool and relaxed, and I am at peace and rested” (5 times).
“When I open my eyes, I will remain at peace, relaxed, and refreshed” (5 times).
• Active listening to recorded music
Requires the following:
• Music player/recorder (small, battery-powered ones are convenient)
• Earphone or headset (provides more stimulation than speaker; less disturbing to others)
• Selection of music the patient likes (some people like fast, lively music but some like relaxing
music. Other options: radio shows, stories, comedy routines, sporting events, inspirational talks)
--- Patient may focus on the rhythm or mark time to the music (e.g., tap out the rhythm with
finger or nod head). Patient focuses on music rather than pain and discomfort.
--- Patient may keep eyes closed and picture something about the music, or keep eyes open
and focus steadily on one stationary spot, object, or picture.
--- Select a comfortable music volume for the patient. Increase the volume if discomfort
increases; decrease the volume when the discomfort decreases.
--- If relief is limited, consider the following options: try other music; add another modality, eg
imagery, relaxation techniques; massage own body in rhythm to the music; time breathing with
music; mark time to the music in more than one manner (e.g. tap foot and finger at the same
time)
• Guided Imagery
Guided imagery is like a “controlled daydream” that turns of stressful thoughts, and promotes
rest and relaxation.
Relax. Close your eyes and breathe slowly and deeply. Inhale through your nose, and exhale
through your mouth.
--- Imagine that you are walking on the beach, listening to the sounds of the waves, feeling the
cool fresh breeze blowing in your face…, or
--- Imagine that you are walking in a very beautiful garden. You can hear the soft rustling of the
leaves and birds singing in the trees. It is a bright and cool sunny day. You notice the different
colors of the garden around you. There is a gentle relaxing sound of flowing water, and as you
move towards it, you are surprised to see a beautiful stream. You dip your feet in the warm,
crystal clear water…
Continue to mentally experience as much as you can – the sights, sounds, touch and textures,
smells, and the mood. Try to imagine as much detail to really take you to your place of
relaxation. Continue to relax and breathe slowly and deeply during your experience.
• Peaceful experiences
In the past, have you experienced something that brought you a sense of peace and comfort?
You may be able to use that past experience to bring you a sense of peace and comfort now.
Think about these questions:
--- Can you remember any situation, even when you were a child, when you felt calm,
comfortable, peaceful, secure, or hopeful?
--- Have you ever daydreamed about something peaceful? What were you thinking of?
--- Do you get a comfortable feeling when you listen to music? Do you have any favorite music?
--- Do you have any favorite poetry that you find uplifting, comforting, or reassuring?
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--- Have you ever been religiously active? Do you have favorite readings, hymns, or prayers?
Even if you haven’t heard or thought of them for years, these religious experiences may still be
soothing.
Some of the things you think about in answer to these questions can be recorded for you; for
example, your favorite music or a prayer. You can listen to it whenever you wish. If your memory
is still strong, you may simply close your eyes and recall the experiences or words.
• Biofeedback
This technique uses measuring devices to give the patient feedback about his/her state of
relaxation, such as a device that measures muscle tension. Using these devices, the patient
tries strategies to produce better measurements.
• Short Naps
Short daytime rests or naps can • lower stress and promote relaxation.
• Other techniques: Exercise, Meditation, Yoga, Tai Chi, and others.
Meditation
• Meditation refers to various methods that generally help one to gain a better, and usually more
expanded, perspective from which to explore one’s mind- including one’s thoughts and
concerns.
• A simple way to meditate is to sit or lie down comfortably, and then quiet one’s thoughts and
remain in that state of quiet. If one feels an urge to move around or do something, one should
just take note of these urges, but not act on them. Various thoughts and feelings will begin to
parade though the mind, but one should just observe and note them, but not act on them. Don’t
focus or hold on to anything, just observe. Remain in this state for 20 or more minutes.
• Meditation takes practice and time to learn. One should practice and meditate at least everyday.
People who meditate have reported feeling relaxed, peaceful, clear minded, and/or more
focused.
Therapeutic Massage
Muscle relaxation can also be achieved with massage. Stress and problems can lead to muscle
muscle tension that may become chronic. Localized painful spasms, or “knots”, can also form.
Chronic muscle tension can result in more physical, mental, and mood problems. Therapeutic
massage involves the application of pressure on the body to relax the affected muscles.
Distraction
Cognitive distraction focuses attention on stimuli other than on the negative thoughts and
emotions, and/or physical or emotional discomfort. Techniques include internal distractions (e.g.,
counting, praying, or making self-statements such as “I can cope.’), or external distractions (e.g.,
music, television, talking to a friend, listening to someone read). Many negative thoughts and
emotions contain an element of rumination (going over the thoughts and accompanying feelings
repeatedly, each time reinforcing their hold on the person). Distraction temporarily stops rumination
by forcing the person to think of other things; and gives the person a change to rest and calm
down.
• Choose things which are interesting or absorbing.
• A person may be overwhelmed, but also feel a sense of responsibility to their mood (eg a
grieving person may feel that it’s a betrayal of someone if he/she stops feeling bad). Distraction
can be a reasonable option since it only provides a temporary relief, and will not permanently
prevent the emotions associated with grief from returning.
• Distration may appear to run counter to other interventions that aim to make the person
acknowledge and deal with his thoughts and feelings; but negative thoughts and feelings can be
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very overwhelming. Distraction provides a temoporary rest and relief, so that the person can
better manage these thoughts and feelings later on.
• Humor and Comedy: Comedy and humor is an effective form of distraction. This may involve:
watching a funny movie or show, listening to a comedian’s routine, reading a funny book or
magazine, or talking with a cheerful and funny person. Laughing also uses facial and body
muscles that are associated with positive emotions. Humor, comedy, and laughing also have a
relaxing effect.
• Personal Project: Productive activities can also provide distraction. It can be as simple as
cleaning and organizing one’s room. Personal projects that are important and close to the
person’s heart can be very helpful.
Exercise
Exercise can be very helpful in various ways. It provides distraction by causing the person to attend
to his exercise activity, it results in muscle relaxation after a good work-out, it helps with sleep, it
directly improves the mood by releasing endorphins and other endogenous substances into the
circulation, it can help improve one’s strength/ endurance/ and flexibility, improves one’s over-all
health and sense of well-being, and others. Isolated exercise sessions can result in many of these
positive benefits; but for maximum benefit, including prevention of negative thoughts and moods,
exercise should be done regularly. Examples of simple exercise regimens include: light-moderate
intensity walking, use of stationary bike or threadmill, or simple active and passive range of motion
exercises. Exercises can be done with the help of family members; some can also be done in
groups.
Art Therapy
Art therapy uses an artistic medium (eg paint, clay, playing music) to create art works that express
and explore a person’s thoughts and feelings. Thoughts and feelings which are not yet well
understood, or which the person cannot express in words, are expressed through art. Through art
therapy, the specialist/ counselor helps and guides the person to further explore his/her thoughts,
feelings, experiences, and behaviors.
Hypnosis
A hypnotic trance involves suspended peripheral awareness, focused concentration, and
responsiveness to suggestions of symptom relief. It works best for patients with high levels of
motivation and readiness to suggestion. It involves self-guided hypnosis or hypnotic induction, and
imagery.
Person Centered Counseling and Interventions

Person centered counseling assumes that the people are capable of understanding themselves,
solving their own problems, self-direction, positive personal growth and positive change-- if they
are involved in a therapeutic relationship with the specialist/ counselor.
• The personal attitudes and characteristics that the specialist/ counselor needs to communicate
to the subject to create a therapeutic relationship are:
-- Congruence or Genuineness: being “real”, without a false front, inner experience and external
expression of that experience match; openly expresses feelings and attitudes that are present
in the relationship; however, expression of feelings and attitudes must not be impulsive, but
should be responsible and appropriate.
-- Unconditional Positive Regard: a sincere caring for the subject as a person that is
unconditional (not affected by judgment of the person’s thoughts, feelings, or behavior);
acceptance of the person as he/ she is; acceptance respects the person’s right to his/ her
thoughts, feelings and behaviors- but it is not an approval of all thoughts, feelings, and
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behaviors.
-- Accurate Empathic Understanding: understanding the person’s experience, thoughts, feelings
and behavior sensitively and accurately as if they are the specialist/ counselor’s own- but
without getting lost in them (emphathic understanding); requires more than objective
understanding and reflecting content to the person- instead it requires a deep subjective
understanding of the patient; achieved by using the one’s own thoughts and feelings that are
similar to the subject, but without losing one’s own separateness
• The therapeutic relationship is more important than particular techniques or methods. These
traditional pateient-centered techniques usually include: listening, accepting, respecting,
understanding, reflecting and communicating understanding. Counselling is non-directive;
active listening allows the patient to express and ventilate his/her feelings and describe his/her
problems. The patient is helped and guided so that he/she can clarify and understand issues.
• The solutions to problems must come from the patient. Direct advice and interpretations are
avoided and limited by the specialist/ counselor so that the patient can decide and formulate
plans on his/her own. This also improves the patient’s coping ability and self confidence.
• The specialist/ counselor may use a variety of techniques (aside from the basic traditional
techniques) as long as the approach is based on the core principles of person-centered
counseling and does not undermine the person’s capacity for self-direction and self-discovery.
• Pastoral and spiritual counseling also frequently uses this non-directive approach in helping the
person deal with spiritual and existential issues.
Supportive Counseling and Interventions

Supportive counseling and interventions aim to resolve psychosocial problems in order to relieve
distress and suffering, improve the person’s level of functioning, and support adaptation and coping
in order to prevent further distress and suffering. Supportive counseling and interventions include
methods and techniques that are also used in other models of psychosocial intervention.
Guidelines for Supportive Counseling (Misch, 2000)
• Conceptualize the case. Case conceptualization or formulation refers to formulating a “theory”
of the case- an understanding of what the problems are, which helps in determining what
interventions are needed. Since a person’s thinking, feeling, and behavior are complex, then the
case conceptualization is always a work in progress, that changes as new information is
obtained, and new aspects of the case emerge. All the details of the case conceptualization
need not be shared with the person; but it must always be updated, and used when planning
and implementing interventions.
• Be a supportive physician and counselor. Constantly assess the person in terms of his/her
strengths and weaknesses, problems, stressors, and response to interventions. Comfort,
encourage, praise, validate, nurture, and protect always. Encourage growth, and promote
independence and autonomy; but help correct problematic and self-destructive behavior. When
appropriate, help guide the person’s thoughts, feelings, and behavior.
• Nurture and protect the therapeutic relationship. Always respect the individual as a person.
Show empathy, compassion, and a commitment to help. Even with a disordered and
problematic person, one should try to ally with the parts of the person which are healthy and
functional. Failure to protect the alliance increases the chances of poor outcomes.
• Focus on the present problems and issues. Interventions should focus on the present issues
and problems. Prioritize the specific problems and issues that need to be addressed.
• Educate the person and his/her family. Education is usually a large part of the physician’s
supportive work. Help the person and his/her family learn about the illness and its management
using understandable, non-technical language. Present the information at appropriate times and
in appropriate amounts that the person and his/her family can handle. During the process of
education and information sharing, preserve hope, and respect the person’s autonomy,
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confidentiality, and wishes. Whenever possible, ask the patient permission to speak to others
about his/her case. Educate the patient and family on ways of coping and adaptation, and
interventions to relieve or resolve psychosocial issues and problems.
• Address the physical, spiritual, and other environmental problems, that contribute to the
person’s psychosocial problems. Physical, spiritual, and other environmental problems can
contribute to the person’s psychosocial problems and distress. Appropriate physical, spiritual,
and other environmental interventions should be done to address these problems.
• Manage positive and negative transference. Transfence is the transfer of feelings from
childhood figures (eg parent) and other people, onto the physician or health provider. Use
positive traference (emotions favor the physician or health provider), such as the person’s faith
and trust, to help the patient respond better to the psychosocial interventions. Confront and
correct negative transference (emotions are hostile to the physician or health provider); usually
by clearly and non-defensively discussing the situation and the reasons for the interventions.
• Help improve coping and adaptation. Coping and adaptation can be improved through
education and repeated practice of specific coping skills and behaviors.
• Holding and containing. Holding and containing involves providing empathy, understanding,
and comfort; while limiting problematic and self-defeating thoughts, emotions and behavior.
Containing may require the use of psychotropic medications, or even hospitalization. However,
the person’s autonomy must be preserved as much as possible; and control and containing
must be withdrawn as soon as the person is able to take control, and make appropriate
decisions.
• Provide a role model. Provide models, or examples of how others have handled specific
situations. The physician can use himself/herself as a role model. Do not present role models
as “perfect” individuals, but as normal, functioning human beings.
• Allow the person to “borrow” capacities until they his/her own. If needed, the patient who
has some “poorly working” and unhealthy capacities, can be allowed to “borrow” and identify
with one’s own well-working capacities. This may include any the following: reality testing,
modulation of affect and emotions, impulse control, problem analysis and solving, and
“emotional intelligence” which includes interpersonal interactions, empathy and social skills.
During the time the patient is allowed to borrow these capacities, interventions are used to
promote the patient’s growth and autonomy; and develop his/her own well-working capacities
that he/she can use.
• Help the person recognize and express his/her feelings. Help the person develop the ability
to be aware that they are experiencing feelings, recognize these feelings, and express and
name these feelings. This promotes a sense of understanding and control over one’s emotions.
• Help the person make connections between thoughts, emotions, and events. The person
with psychosocial problems may not be able to make the appropriate connections that people
normally do in everyday life, and use to function in the real world. These include connections
between stressors, events, thoughts, feelings, one’s behavior, and the response of others.
Understanding the connections between events, and one’s thoughts, and feelings, gives the
person a greater sense of control and an improved ability to function well in life.
• Promote self-esteem. Help the person master important skills such as interpersonal and social
skills, problem solving and coping skills. Give specific tools and methods based on the person’s
innate skills and abilities. Help, encourage, and guide them as they gradually learn these skills.
It usually helps to have a job, whether it’s a paid, unpaid, or volunteer work; or to attend school
or classes. This helps the person develop a sense of identity and a sense of structure and
normalcy, increases self esteem, and geves a sense of belonging in a group or community.
• Normalize thoughts, feelings, and behavior. Many patients believe that they are “not normal”
either in the way they think, feel, react, or behave. Help them realize that they are not alone,
and that everyone has to deal with issues and problems in their daily lives. Other people can
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think, feel, react, and behave in similar ways. They will also find it helpful to know that their
problematic behaviors are actually normal adaptive and coping behaviors that are just
misplaced or mistimed.
• Relieve hopelessness. Hopelessness results from the person’s sense of having few or no
options left. Help the person realize that there are other options left (eg comfort and quality of
life, instead of cure). Reframing helps the person to see the good aspects, or the “silver lining”
in his/her situation. One should also directly address and relieve the physical, psychosocial,
and/or spiritual problems that foster a sense of hopelessness. Correct thoughts that lead to
hopelessness. Help the person develop develop self-esteem and master coping skills.
• Encourage the person to practice new ways of thinking, feeling, coping, and behaving.
Always encourage the patient to actively practice what they have learned and developed. Help
the person determine a set of specific, concrete, and achievable behavioral goals.
Cognitive Behavioral Interventions (CBI)

Cognitive behavioral interventions, CBIs, are becoming increasingly popular in palliative care.
Cognitive interventions assume that a person’s assessments and thoughts (cognitive patterns or
thought patterns) about stressful events and factors (such as having cancer, pain, experiencing a
relapse, etc) influence their emotional and behavioral reactions. The person is helped to recognize
and understand their problematic thoughts and thought patterns that are causing distress and
prioblems; and look for alternative thoughts and interpretations that are more helpful. Behavioral
interventions identify maladaptive behaviors and responses, and replace them with healthier ones.
Some behavioral interventions commonly used in CBIs are: relaxation methods, social/
assertiveness skills training, behavioral rehearsal, modelling, homework assignments, and others.
CBIs integrate cognitive restructuring interventions with behavioral modification interventions.
• Basic steps include: teaching the person the basic priciples/concepts of the CBI, followed by
teaching and coaching the person on the particular CBIs that will be used.
• Follow-up counseling sessions include: follow-up assessment of psychosocial problem, setting
goals/agenda for the session, reviewing previous events/sessions and feedback, reviewing
homework/assignments, discussing concepts and topics for the current session, teaching and
coaching on the new and ongoing interventions, new homework/assignment, summary of key
points, feedback on the current session.
CBI methods include:
• Cognitive restructuring and reframing (see below)
• Systematic positive reinforcement: Reinforce helpful and healthy behaviors giving rewards;
weaken unhelpful and unhealthy behaviors are by withholding them. Very useful in children.
• Validity testing: Ask the person to defend his/her thoughts and assessments; and unhealthy
thoughts and assessments which the person cannot support using objective evidence is shown
to be invalid and faulty.
• Guided discovery: Ask the person a series of questions to guide him/her towards the
discovery and realization that his/her thoughts and assessments are faulty and unhealthy.
• Cognitive and Behavioral Rehersal: Ask the person to imagine a situation, especially a
situation experienced in the past; and then, practice or rehearse helpful and healthy behaviors,
reactions, and ways of coping. These behaviors are then gradually practiced in real life.
• Writing a journal: Ask the person to write a diary of events or situations, and the thoughts,
emotions, and behaviors that accompany them. This is reviewed to determine unhealthy
thought patterns, and their effects on emotions and behavior.
• Homework: Homework assignments are used to facilitate self-discovery and reinforce helpful
lessons and insights that were learned. Homework may include: journal writing, reading helpful
articles or books, listening to recorded sessions, watching helpful videos, or listening to helpful
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audio materials; and applying newly learned behaviors and coping mechanisms to situations
and recording the results so that it can be discussed and reviewed on follow-up.
• Modelling: The physician or health provider acts out or models appropriate and helpful
thoughts, emotions, behaviors, and reactions to different situations.
• Aversive conditioning: Weaken those behaviors which are difficult to change, such as those
that are habitual and/or temporarily rewarding, by exposing the person to unpleasant stimuli.
The unpleasant stimuli become associated with the unhealthy behavior.
• Counterconditioning: Weaken maladaptive and unhealthy behavior by strengthening a
behavior that is incompatible with it. A form of counterconditioning is systematic desensitization
which counteracts the distress, anxiety, and other unhealthy reactions by inducing a relaxed
response instead. Relaxation techniques are usually used for this purpose.
• Cognitive triad: The cognitive triad consists of negative thought processes that are common in
depressive and other disorders. The triad includes: negative view of self (including the
assumption of responsibility for the disease and other negative experiences experienced by the
person and/or the family); negative view of others and the world; and negative view of the future
(including the assumption that the future will only bring more pain, suffering, and finally- death).
These negative cognitive processes should be addressed using appropriate interventions (eg
cognitive reframing and restructuring techniques).
• Behavioral Activation: Involves developing a list of behaviors and activities that the person (or
family) will likely enjoy, or activities that will give the person (or family) a sense of normality or
satisfaction in life.
Jounaling, Keeping a Diary, and Venting

Talking about one’s problems and concerns with other people can be very comforting. This gives
the person a sense of being listened to and understood; and it also gives the person a chance to
gain a better grasp of his/her issues and concerns. Journaling or keeping a diary is another way of
expressing one’s problems and concerns as often as one needs, and without the need of an
audience.
Self-Monitoring
Self-monitoring is an important skill to teach patients and family members. Self-monitoring requires
that the person becomes more conscious and aware of his thoughts, feelings, and behavior. One
simple way to do this is for the person to keep a journal or diary, where he/she can write his
thoughts, feelings, and behaviors- particularly negative thoughts and feelings, and behaviors which
he/she is trying to control or change.
Cognitive Restructuring or Reframing

Cognitive reframing involves learning to monitor and evaluate negative thoughts and replacing
them with more positive thoughts and images. Instruct the patient to begin self-monitoring his
thoughts in reaction to specific situations. A simple way is to write down his/her thoughts in a
journal/diary. Review the journal/dairy with the patient. Explore and try to identify the person’s core
ideas and beliefs that explain the person’s thoughts. Identifying and writing down one’s negative
thoughts, and their underlying core ideas and beliefs, allows the person to: get a handle on them,
view them from a different perspective, and recognize anything that seems inaccurate or irrational.
Help the patient correct or modify his/her thoughts, ideas and beliefs; and develop one’s which are
more positive and realistic.
For example: Event: “Can’t go to the bathroom without help”; Thought/s: “I’m embarrassed,” “I
should have been able to go to the bathrrom on my own”; Core ideas and beliefs: “I’m useless,”
“I’m worthless”; Corrected thought/s: “I really needed help to go to the bathroom, but I was able to
stand up and support some of my weight. My family understands my illness and is happy to help
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and care for me. I will continue with the set of exercises that the doctor gave me so that I can
support my weight better when I go to the bathroom in the future.”
Common Types of Cognitive Processing Errors
Identifying problematic and negative thoughts and beliefs can be difficult for people. Educate the
person and help his/her identify common thought and belief mistakes; and help them correct and
avoid these errors. A simple approach uses guided discovery and validity testing (see CBI above).
This involves: helping the person identify the evidence/s that the thought or belief is true; the
evidence/s that it is not true; and finally helping the person identify other ways of looking at things.
The goal is to help the person develop and use positive and helpful cognitive processes.
• Overgeneralization: an exaggerated appraisal about an event or a situation (eg “I needed help
in getting up from bed this morning… so that means that I’m an invalid.”).
Magnification: a negative event or situation is magnified out of proportion, and given meanings
that it doesn not really have (eg “My son didn’t visit me today… and that means that he hates
taking care of me”).
Minimization: a very positive event or situation is deflated of its positive meaning (eg “I was
able to help and give good advice to someone in my support group today… but I was just lucky
that I remembered what the doctor told me last week- if it wasn’t for that, I’m not really much of
a help to anyone.”).
Cognitive Avoidance: avoiding and/or suppressing unpleasant and discomforting thoughts,
emotions, or events which are wrongly perceived as overwhelming.
Disqualifying the Positive: related to minimization; a person takes note of a positive event or
situation, but finds a reason to discount it (eg “My children call me all the time to ask me how
I’m doing… but they’re only doing that because they pity me. They really don’t love me.”).
Selective Attention, Selective Negative Focus: focussing only some aspects of the situation.
A person may focus only on negative aspects of a situation, and discard the positive as
irrelevant or unimportant (eg “We ran out of cookies to offer our visitors..” while not paying
attention to the fact that his/her friends visited). Focusing on negative events, experiences, and
memories, at the expense of positive or neutral information.
All-or-Nothing: appraisal of a situation is polarized- there is only black or white, and no shades
of gray in between (eg “Either I’m a success or I’m a complete failure” “I did not completely
respond to the treatment… that means I’m a total failure.).
• Jumping to Conclusions: falsely jumping to conclusions that are not warranted from the facts
available about the situation.
Somatic Focus: interpreting symptoms (eg shortness of breath, pain, dizziness, palpitation) as
a definitive evidence of an impending catastrophic event (eg heart attack, death).
Labelling: a blanket statement or label on someone or something in the absence of evidence to
make such a statement (eg “I’m unlucky. I’ve always been and will always be unlucky.” “My
children are selfish bastards. They don’t care for anyone but themselves.”); a person’s
characteristic or event is used to define the person or event (eg “I ‘failed’ the treatment, I am a
‘falure’.”)
Mind-Reading: concluding that one knows what another person is thinking, and reacting based
on that conclusion; negative conclusions about other people’s thoughts, intentions, or motives.
(eg “Why should I bother asking the hospital staff for help… they all hate me anyway, because
I’m difficult to take care of.”).
Negative Predictions: Prematurely and inappropriately making negative predictions about a
new situation based on pessimism or past failures and negative experiences.
• Emotional Reasoning: if one feels that something is true, then it is really true; reasoning based
on one’s emotional state. “I feel that…, therefore…”
Blaming and Personalization: blaming oneself (or another person) for being responsible for
something that is beyond one’s or the other person’s responsibility; interpreting a behavior,
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event, or situation as indicative of a negative aspect of oneself (eg “It’s all my fault that my
father died. I should’ve been there for him. I’m a bad son/daughter.”- when the father died due
to other obvious reasons).
Shoulds, Musts, and Oughts: making imperative statements and demands that are too
difficult and unrealistic; perfectionist and artificial demands on oneself that are difficult or near-
impossible to meet; then punishing oneself for failing to meet them (eg “I should recover much
faster that the other patients. I’ll eat well and exercise hard everyday”). One can also apply this
to another person (eg “Father ought to be stronger than that… he shouldn’t feel bad and let that
bother him- while not making an effort to justify why it should be the case; its simply stated as if
it’s a fact of life).
Thought Stopping
• Teach the relationship between thoughts, or a series of thoughts, and resulting feelings and/or
behaviors. One thought can lead to another, and so on, and result in feeling/s and/or behavior
based on those thoughts.
• Teach the person to be more aware of these thought/ feeling/ behavior process; and to do
something to interrupt the progression if it will lead to a negative feeling and/or behavior.
• One way to do this for the person to silently, but forcefully, think “STOP!” with enough energy
that the progression of thoughts stops and is forgotten. Another way is to do something such as
slapping the back of one’s own hand with the opposite hand, or wearing a rubberband on one’s
wrist and snapping it, to create a sensation that is sharp and stinging enough to stop one’s
thoughts.
• After the thoughts are stopped, the person can do something to prevent the thoughts from
recurring. Examples of things to do are: writing on one’s journal/diary and proceeding to do
reframing or cognitive restructuring, calling a friend and engaging in an interesting conversation,
or talking about one’s thoughts and concerns with another person in order to gain a more
positive perspective and control these thought processes that lead to negative outcomes.
Self-Suggestion or Auto-Suggestion
This involves repeated self-suggestions of positive and helpful ideas, thoughts, or images.
• Affirmation: Repeating a positive and helpful idea about oneself to oneself. This can be used
to increase self-esteem (eg “I am a good and kind person”). Effective self-affirmations are the
ones that the person will ultimately believe to be true about himself/ herself. Repeating
statements about oneself that are unlikely for one to ever believe in might just result in repeated
reminders of one’s failings and weaknesses.
• Imagery: Self suggestion can also be done using imagery. If a person is doing leg rehabilitation
exercices, he/she can have pictures of himself/herself hiking or jogging, and regularly look at it
for motivation.
• Relaxation: Self-suggestion can be used with relaxation techniques. For example, one can
begin with a relaxation technique to achieve a state of relaxation, and then repeat the words
such as “Peace” or “Relax”. The goal is to pair the word/s with the feeling or state of relaxation,
such that the person can use these words repeatedly to quickly achieve relaxation.
Crisis Interventions
A crisis is an event that a patient and/or family member cannot cope with. Crises may occur at any
time during the course of illness and after the person dies; it may occur during the time of
diagnosis, active treatment, treatment complications, disease progression, relapse, recurrence,
death and bereavement. The patient and family will initially attempt to adapt using their usual
coping strategies. If these fail, they will try to cope by trying new strategies; but if these too fail,
then psychosocial problems worsen, and sense of control and morale is lost. Maladaptive coping
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strategies may be used, which results in decompensation or a further breakdown of psychosocial
functioning.
Elements of a Crisis- Tripartite Crisis Assessment (Webb, 1999)
The impact of a crisis depends on the interaction of 3 sets of variables.
• Nature of the Crisis Situation
Physical problems
Psychosocial and environmental problems
Anticipated vs Sudden
Single Event vs Recurring Event
Solitary Experience vs Shared Experience
Presence of Loss (eg death of family member, separation from family, loss of familiar
environment, loss of familiar role, loss of body part, loss of function)
Presence of threat to life (to self, family, others)
Presence of violence
• Strengths and Weaknesses of the Support System
Nuclear Family, Extended Family, School, Co-workers, Friends, Community, Culture, Religion
• Characteristics of the Individual
Age: Child (developmental stage, cognitive level, mood development, temperament),
Adolescent, Adult, Elderly
Personal meaning of crisis event
Precrisis problems (in home, school, work, community, peer group, etc)
Coping Style and Resilience
Past experience with crisis
Stages of Crisis
• Crisis Stimulus
• Stage 1: Mounting Tension: Tension increases as the habitual responses are used in an
attempt to return to previous steady state.
• Stage 2: Disorganization and maximum tension: Failure in attempts at problem solving.
Feeling of anxiety and helplessness.
• Stage 3. Mobilization of internal and external resources: Increased suggestibility.
Vulnerable to good or bad advice. New solutions are needed.
• Stage 4: Adaptation or maladaptation: May have 3 possible results: Crisis resolution
(adaptation to new situation; stability and steady state restored at previous of higher level),
Maladaptation or pseudoadaptation (superficial “closure”, recurrent symptoms), Major
disorganization (leads to severe psychological problems).
Crisis Intervention Strategies
• Early intervention: Start the intervention as soon as possible, at the onset of or immediately
after the onset of crises.
• Patient and family involvement: Involve of the patient and his/her family in the management.
• Clarify the problem and allow the person to ventilate his/her emotion.
• Coping Strategies: Identify and encourage more adaptive coping strategies. Minimize the use
of maladaptive coping strategies.
• Problem solving strategies: Help the patient and his/her family develop better problem solving
skills and strategies.
Coping Strategies
• Explore the coping strategies that the person uses. Ask “What challenging and/or stressful
situations hacve you experienced in the past? What coping strategies have worked well for
you? What coping strategies have not worked as well?”
• Help the patient develop effective coping strategies.
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Effective Coping Strategies for Adult Patients and Family Members
Coping strategies that are often noted to be very helpful when dealing with severe illness include:
• Acknowledging the reality of the illness: more helpful on the long term, than denial (which may
be reasonable and helpful on the short term).
• Maintaining a hopeful and optimistic attitude: Even if cure is not likely or possible, one can
continue to be hopeful and optimistic about living one’s remaining life to the fullest and without
significant distress and suffering.
• Expressing one’s thoughts and emotions: being able to express both positive and negative
thoughts and emotions (by talking to or writing to another person, or writing in a diary or
journal).
• Monitoring and correcting one’s thoughts and emotions: being able to react to situations in a
positive manner, and in a manner that is proportional to the reality of the situation.
• Reaching out for support: Support may come from family, friends, and even support groups.
• Searching for and finding a positive meaning: Searching for and finding a positive meaning to
one’s situation- including the meaning of one’s life, of one’s illness, and of death and dying.
• Spirituality: Helpful and positive spiritual and /or religious beliefs.
• Maintaining self-esteem: Searching for, developing, maintaining and discovering sources of
self-esteem.
• Accepting one’s mortality: Does not meaning giving up hope, but accepting the possibility of
death- especially in the context of one’s beliefs.
• Participating in one’s care: Participating in the decision making and management planning; and
in the delivery of care.
Life Narrative
• Encourage the person to share a narrative account of his/her life.
• Using the person’s life narrative, develop an understanding of the person’s reaction to his/her
illness, his/her beliefs and philosophies about life and death.
• Explore how the person responded to past challenges and problems in life; relate this to how
the person is responding to his/her current illness and problems.
• Determine how the person wants to be remembered by family and friends.
• Explore the patient’s accomplishments and achievements in life. The important roles that they
have played and the people that they have helped in their family and in the community. Promote
a sense of accomplishment, self-worth and self-fulfillment.
Role Playing
• Role playing involves a simulated situation that allows a person to learn, practice, and work on
skills and situations.
• Social skills, communication skills, assertiveness skills, parenting skills, and others can be
practiced and developed through role playing.
• One can role play by imagining a situation as well as one can, and acting out the interaction.
Role palying is best done with other people to interact with. One can simulate an interaction
with 1 or more people- staying in character as long as possible. As the role playing scenario
ends, the other people can give feedback and suggestions on how to improve one’s skill.
• “Fixed role playing” involves acting as though one has certain preferred or positive skills or
characteristics that one wants to have, but doesn’t currently have. For a pre-determined period
of time, the person pretends to have these skills or characteristrics as he/she interacts with
people and go about his/her life. Play acting a particular role, gives the person the experience
that he/she can use to integrate preferred skills and qualities of that role into his/her actual
normal selves. For example, a person who lacks self confidence will act as if they are more
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confident; and after having play acted at being confident, he/she learns how to be more
confident within their own actual personalities.
Skills Training Interventions

Skills education and training interventions teach important skills using a standard approach: the
specialist educates the person about the skill, shows how its done by modeling the skill or showing
a video about the skill, the person practices the skill with the specialist, the person is encouraged to
practice the skill in his/her daily life, the person and the specialist monitors the person’s progress
and gives feedback, the training is adjusted if needed until the skill is learned.
Communication Skills Training

Basic teaching points for communication skills
• Be aware of one’s own thoughts, feelings, and wants.
• Be aware of the thought, feelings, and wants of others.
• Ask for feedback (how your message comes across to the other person) and give feedback
(how the other person’s message comes across to you).
• Listen to both content and feelings.
• Summarize the major points of the other person’s message and try to understand their point of
view (validation).
• Ask open ended questions. Instead of yes or no questions, use open ended questions to give
the other person the opportunity to express himself/ herself.
• Avoid cross complaining (responding to a complaint with your own complaint).
• Avoid interrupting (not letting the other person finish what they’re saying).
• Avoid insulting the other person.
• If you sense that the conversation is becoming problematic, stop the conversation, check and
correct what is going wrong. If needed, postpone the conversation to another time.
Problem Solving Skills

Patients and families usually expect the palliative care specialist to solve most of their problems.
Teaching patients and families how to find their own solutions is very important and helpful.
Steps in Problem Solving:
• Problem identification: Clear description of the problem. Identify and verify possible causes.
• Goal definition: Clear definition of what one wants to achieve of change.
• Generation of Alternatives and Options / Brainstorming: Ways to achieve the goal.
Consider successful strategies used in the past. Be creative. List down all alternatives.
• Consequences: The positive and negative consequences of all possible options and
alternatives. Include the advantages/ disadvantages, difficulties/ burden, and possible
outcomes. Consider how one feels about these consequences. Use a decision table.
• Decision: Decision on which alternative or option to take.
• Implementation: Implementation of the decision. Use an implementation plan. Mobilize
resources needed. Set a time frame for the attempt.
• Evaluation: Review and evaluate the outcome. Improve on the solution if needed.
Self Esteem Exercises

Low self esteem is a significant problem in many people.
• Help the person identify cognitive distortions, or negative thoughts that lead to low self-esteem.
Dispute and modify/ change these thoughts.
• Use a self concept inventory: Determine the areas that are important to self image. Group
according to strengths and weaknesses. Emphasize the strngths. Modify the weaknesses- view
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the weaknesses in positive ways that do not lower self esteem. Finally, develop a new self
inventory that is more positive and realistic. The person should then practice these new set of
thoughts and scripts regularly.
Social Skills Training

Social skills training teaches people more adaptive ways of behaving and interacting with others.
This can be achieved by a combination of cognitive and behavioral interventions.
• Cognitive skills: Help the person develop the following cognitive skills: analyzing of causes and
effect of one’s social behavior, generating alternative solutions to one’s social problems,
evaluating of long-term and short-term consequences, viewing the problem situation from other
people’s perspective, developing a clear plan to improve one’s behavior and how to cope with
possible diffculties.
• Behavioral skills: Education and instruction social skills. Modelling the proper behavior, followed
by practices and rehersals. Regularly practicing what is learned. Feedback.
Assertiveness and Setting Boundaries

• Teach the patient and family about the concept of boundaries in relationships. Teach them that
boundaries are like walls around each individual in a relationship (psychological/ individual
boundary), and around two or more people in a relationship (relationship boundary).
• Various things can negatively affect boundaries. For example, trust is needed to keep
relationship boundaries intact; if trust is betrayed, then the relationship boundary can fail.
Various aspects about the relationship that used to be held in trust become accessible to other
people. Teach the patient and family how to determine, set and maintain helpful relationship
boundaries.
• Self-respect and self-determination are related to individual boundaries. Individual boundaries
preserve the right of each person to keep some parts of themselves separate from the
relationship- and not allow their relationships to define them completely. Teach the patient and
family how to determine, set, and maintain their individual boundaries. Boundary violations
include actions that cause one to feel disrespected, belittled, unimportant, taken for granted,
abused, and other negative actions.
• Assertiveness skills allow the person to defend his/her boundaries against boundary violations
and intrutions.
• Teach the patient and family that people can relate to each other in 3 ways: passively,
aggressively, or assertively. Aggression involves dominance, and violation of other people’s
boundaries. Passivity involves submitting to the aggression, and putting one’s well being and
wants aside in favor of the aggressor. Assertiveness involves finding a middle ground between
aggression and passivity, and relate in a way that respects the boundaries of everyone in the
relationship.
• Assertiveness involves: being aware of interactions that involve aggression or passivity;
realizing one’s right to defend oneself from aggression and one’s duty to act without being
aggressive and disrespectful; deciding and acting to put a stop to put a stop to the aggression,
or correct the passivity; and preventing aggression or passivity from recurring.
Gestalt Counseling and Interventions

• The main goal of Gestalt counseling and interventions is self-awareness. The focus is on
becoming aware of one’s current thoughts, emotions, and behaviors. Interpersonal issues are
uncovered and resolved during therapy.
• Gestalt therapy can be used in one-on-one individual, couples, family, and group counseling.
• The Gestalt approach may use a wide variety of active interventions and techniques aimed
toward increasing self-awareness.
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• Statements or Questions to Focus Awareness: can be as simple as asking the person “what are
you feeling?” or “what are you thinking?” instructing the person to begin a statement with “Now,
I am feeling…”, or “Now, I am aware…” After thoughts or feelings are brought into awareness,
the specialist/ counselor may follow with instructions to “stay with it,” and/or “feel it out.”
• Modifying Verbal Behavior or Language: when appropriate, the person is asked to take
responsibility and “ownership” for his/her thoughts, feelings, or behaviors, by substituting the
personal pronoun “I”, instead of using general terms as: it, you, a person, someone, etc.
Removing qualifiers (eg maybe, perhaps, I guess) may help the person gain a sense of control.
Other methods include asking the person to: use clear, direct statements instead of ambivalent
weak statements or questions; use “I will not” (I choose not to do...) instead of “I cannot”; use “I
want” instead of “I need”; use “I choose to” or “I want to” instead of “I should” or “I ought to”, and
others.
• Awareness of Non-Verbal Behavior: helping the person become more aware of their non-verbal
behavior and the connection between one’s verbal and non-verbal behavior; help the person be
aware of how they can use their body to support their excitement, awareness, or contact (eg a
person who experiences sadness and begins to tighten his jaw, is asked to try to breath slowly
and to gradually let his jaw move down); awareness of bodily responses (eg breathing pattern,
hand gestures, posture) in response to feelings (eg anger, sadness)- awareness can
sometimes be enhanced by asking the person to give these body areas a “voice” (eg the person
hits the top of the table with his/her fist, and is asked to “give your fist a voice,” “hit the table
again, and see if you have something to say as your fist.”)
• Enactment and Role Playing
-- Enactment: asking the person to put his/ her thoughts and/or feelings into action; “putting
words into it” (thoughts and feelings)
-- Role Playing and Self-Dialogue: may be done in various ways; a common Gestalt technique
is the “empty chair technique” or the “two chair dialogue”. The subject sits on a chair, and is
asked to talk to and begin a dialogue with someone (or something) imagined to be in another
empty chair; and imagine that the person (or thing) responds to him/ her. Encourage the person
to maintain a long, detailed interaction. Then the person can shift back and forth between chairs
to speak for himself/herself and also for the other person or thing in the other chair. If the
problem is interpersonal (involves another person), then the dialogue will involve that other
person, and the subject changes roles (chairs) as the dialogue unfolds. If the problem is
intrapersonal (eg too submissive, lonely, or angry), the dialogue can involve a person with
whom the problem is currently being experienced (or had been experienced with in the past, or
can be experienced with in the future). People, objects (eg wedding ring, book), parts of one’s
personality (eg the parent, the child, introverted part, the worrier), emotions, symptoms (pain,
fatigue), and many others can be imagined in the empty chair. The specialist/ counselor helps
and guides the person to realize that the conflicts, problems, or difficulties being encountered
actually exists inside him/her; that he/she must take responsibility for them, explore them, deal
with and resolve them.
• Guided Visualization: may be easier to do for some people, instead of enactment or role-
playing; the person is asked to relax and close his/her eyes; and, guided by the specialist/
counselor, imagine a past or future situation.
Psychosocial Interventions for Children

• Children think and behave differently from adults, and psychosocial interventions for children
must reflect this difference.
• Palliative care has adapted its approach to accommodate the child’s world, using activities
which are enjoyable for children, as a means of communicating, supporting, and helping them.
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• Interventions usually aim to relieve discomfort, and help in the child’s growth and development.
Interventions sometimes aim to prevent, moderate, or delay any adverse psychosocial
problems due to the experience of severe illness.
• An adequate assessment of the child’s needs, preferences, and favorite activities should be
done. The choice of interventions is based on the child’s preferences and needs.
• The kind of intervention, activity and/or play is also chosen based on whether they are suitable
for specific objectives.
Specific objectives may include: (Luzzatto and Gabriel, 1998)
-- distraction of attention (eg for anxiety causing procedures)
-- blocking or inhibiting distress
-- mitigating adverse effects of medical procedures and treatment (eg pain, nausea, fatigue)
-- reducing fear of the unknown
-- reducing negative emotions (eg distress and fear)
-- inducing positive emotions (eg confidence, happiness, pride)
-- increasing self esteem
-- increasing sense of control
-- improve cooperation during medical procedures
• Interventions mainly follow the patient (child) centered approach. It is non-directive; the child is
allowed to express his/her feelings and describe his/her problems through play and other
activities. The child is helped and guided so that he/she can clarify and understand his/her
thoughts, feelings, and behavior, and discover better ways of thinking, feeling, and behaving.
• The personal interaction with the palliative care providers during these activities facilitates
acceptance, catharsis, reduction of problematic moods and behavior, control and redirection of
impulsive behaviors, and control emotional problems. Providers should create a safe and
relaxed atmosphere; and listen and observe for verbal and non verbal expressions in an
emphatic, non-distracting and maximally permissive manner.
• Interventions may include: Age appropriate play-based intervention, guided imagery, fantasy,
visual arts activities, book reading, story telling, writing, drama therapy, cinema/video therapy,
clowns, humor, music, singing, dance and movement, animals and pets, parties and outdoor
activities. These interventions are used for children; but many are also suitable for adults.
• Play Therapy and Play-based Interventions
• Play-based interventions are psychosocial interventions that are done though the use of play. In
the safety of the play area, the child can express his/ her feelings through play and fantasy. The
palliative care provider helps the child work through, and master these feelings and concerns
during the play session. Positive effects gradually carry over to the child’s daily life.
• Basic play intervention tools may include: play area, chairs and tables, paper, pencil, crayons,
dolls, and toy phones. Activities and toys should be simple and not overly stimulating, so that the
focus can be on the projective and expressive nature of the play activity.
• Activities can be followed by discussion and counseling, using the play experience and/or the
fantasy produced during play activity. Kinetic groups for children begins with exercises or
games, followed by discussion and counseling.
• Storytelling activities, puppet plays, and making emblems, collages or murals, allow the subject
to express their issues and problems in a non-threatening way. Learning how and being able to
express themselves are the first steps in helping some children resolve their problems.
• Through play therapy, the child can create a safe world where they can practice behaviors and
social skills, overcome stressful and uncomfortable feelings (eg fear, worry, sadness, anxiety),
and gain control over stressful experiences.
• Parents play an important part in play therapy. They give feedback to the specialist/ counselor
about any changes in the child at home. The specialist/ counselor helps the parents understand
the child’s play, and suggests how the parents can support the child’s therapy at home.
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• Play is usually more useful than verbalization for pre-school children. As the child grows older,
verbalization becomes more useful. Many interventions that are based on verbalization, similar
to those used for adults, can be used for pre-adolescent and adolescent children.
Child Genogram
• The child genogram is based on the genogram technique for families. The older child or
adolescent, with the help of the specialist/ counselor maps his/ her family (younger children can
be asked to draw their families). This allows the child to express issues and problems with
family members; and allows the specialist/ counselor to further assess, explore, and address
these issues and problems.
Medical Procedures (Kazak and Spirito, 2005)

• Some commonly used interventions for procedural pain and distress include distraction,
relaxation, breathing exercises, modeling, imagery, rehearsal, and coaching. Common
procedures are injections, IV insertions, lumbar punctures, biopsies and others.
• The development of relatively safe and effective pharmacologic methods (eg analgesic agents,
sedatives, and conscious sedation methods) for children undergoing painful and distressing
procedures has led to a shift in practice during the past decade- from non-pharmacologic to a
more pharmacologic approach. However, in practice, combined pharmacologic and non-
pharmacologic interventions are more effective than either one alone.
• Non-pharmacologic cognitive-behavioral interventions deceases observed pain, behavioral
distress, and parent anxiety during procedures. They are very helpful in children who are
anxious, have high pain sensitivities (threshold for pain is low), or who have developed
maladaptive responses to particular procedures. They can also reduce negative memories and
experiences about the procedure.
• Before the procedure, teach the parent/s or caregiver the basic knowledge and skills to do the
intervention. Practice them couple of times. If the child is under 5 years, explain the proc edure
in simple age-appropriate terms just before it’s done; if the child is over 5, explain the procedure
earlier (eg 3-5 days prior to the procedure).
• Prior to the planned medical procedure, the child can practice the procedure on a doll. Then he
can also practice as a patient.
• After the procedure, the parent/s should stay with the child until they are calm and comfortable,
praise the child appropriately, promote a sense of achievement, or say something positive-
especially if the child is upset (eg “you did really well, and you were very brave”). Infants usually
like to be cuddled and offered feeding.
Distraction Interventions for Children (Kazak and Spirito, 2005)

• Distraction helps relieve the pain and distress experienced during procedures and other
situations. They can be used together with pharmacologic management (analgesics, sedatives).
• Important Points in Distraction
-- Focus the child away from the procedure
-- Use activities (eg blowing bubbles, reading interactive books, toys) that holds the child’s
attention and interest. Allow the child (and parent/s) to choose from different age appropriate
distractors.
-- Keep the child also focused on the parent/s (or a familiar person) whom you have instructed
about the distraction intervention prior to the procedure.
-- Praise the child afterwards. Praise the child at the end of a procedure for which distraction
was used to control pain and distress due to the procedure.
• Simple Distraction Methods for Children
Babies and Infants: stroking and rocking, singing of humming a familiar song or lullaby, playing
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music, rattles, age appropriate toys
Young Children: deep breathing, blowing bubbles, reading a book, counting, watching a video
(eg cartoons), humor
Older Children and Adolescents: listening to music, relaxation, imagery
• Specific Examples of Distraction Methods
-- Interactive electronic toys: one of the most effective methods of distraction. Use a toy that is
appropriate for the child. The electronic toy should provide interesting and engaging tasks or
learning activities for the child (eg toy lights up or makes sounds if the child picks the right
shape or color, toy computer with several learning activities). Interactive toys that can be held in
front of the child to prevent a view of the procedure are particularly useful.
-- Storybook procedure: child chooses a storybook, then the parent/s read the storybook and
asks the child to point to pictures or press buttons on the book that produces sounds.
Interactive books that can be held in front of the child to prevent a view of the procedure are
useful.
-- Cartoon show procedure: child chooses a cartoon video from a collection, and parent/s
encourage the child to watch the cartoon and talks to the child about the cartoon
-- Breathing exercise: the parent/s encourage the child to breath deeply and slowly; party
blowers, blowing pinwheels, or blowing bubbles can be used; a calming message can be
repeated by the parent/s or through a recording (eg “I feel better/relaxed with my party blower”)
-- Music: for older children and adolescents, consider a recording of their favorite music (eg CD
or MP3 player and earphones).
Family Centered Interventions

Family centered approaches and interventions whose focus is on the family as a unit (especially
relationships), and not the individual (patient or family members).
• The most common approach is to meet and counsel the family as a group.
• Individual problems and issues may require separate individual counseling and interventions. If
this is the case, then the specialist/ counselor should establish clear boundaries between family
and individual counseling and interventions.
• If one or more family members are unable to participate, uncooperative, or resistant to
participate, family counseling and interventions can still be done based on the understanding
that counseling and interventions will focus only on the group of family members who are willing
to or are able to participate.
• During family sessions, the specialist or counselor assists the family in: setting goals,
preferences, and priorities; defining the problem/s; reframing and correcting negative thoughts
and emotions among family members; solving problems; developing coping, communication,
and other skills; and developing treatment and management plans (for the patient and/or
family). Sessions may involve: education and discussion of key concepts (eg causes of family
dysfunction, characteristics of a functional family, importance of communication); problem
solving activities; skills learning; role playing; homework/assignments; and other activities.
• Family centered interventions can be used in combination with other interventions such as:
individual counseling and interventions, group based interventions, and pharmacologic
interventions.
Family Meeting and Family Couselling (see also chapter on communication and counseling)
Simple Family Behavioral Strategies to Enhance Family Functioning

Determine which of the following strategies can best help the family. Suggest and teach the some
or all of the following strategies depending on your assessment of the case.
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• Feedback
Teach family members the importance of good communication; and how to appropriately give
and receive feedback. Feedback makes them aware of: their perceptions of themselves and
each other, and how their behaviors and reactions affect each other. It encourages
communication, as each discuss and respond to feedbacks. Family function usually improves
during the process of giving, receiving, and responding to feedback.
• Private Family Meetings
Teach and encourage the family to meet regularly. Private family meetings promote
communication and cooperation. Teach parents the basic principles on how to conduct their
family meetings—eg choosing a convenient time, selecting a relaxed and comfortable setting,
determining what issues to discuss, allowing and encouraging each member to share one’s
thoughts and feelings with the rest of the family, assigning tasks if needed, being supportive,
listening to each other, and ending in a positive manner. During their meetings, the family learns
how to: decide and solve problems as a family, identify and solve family problems, organize and
prioritize activities, discuss and solve disagreements and conflicts, update each other on each
member’s activities and concerns, acknowledge and praise accomplishments, and/or just
simply spend pleasant times together.
• Special Time
Teach and encourage parents to each spend special times with each child. Special times are
scheduled uninterrupted times that a parent spends with a child. Each child feels loved and
respected. It eliminates conflicts; and it gives each parent a chance to praise, encourage,
interact with, and to know more about each child. Special times for the husband and wife also
promote a sense of love, trust, and commitment.
• Family Activities and Rituals
Inquire about and encourage family activities and traditions that promote stability, cohesion,
strength, joy, and identity. Some activities and rituals can also maintain a sense of belonging to,
and connection with the community. These strengthen the social support network. Activites and
rituals may include: regular mealtimes, weekend family activities, regular family meetings,
visiting or calling relatives regularly, holiday celebrations, special family events (eg birthdays,
graduation), religious/ spiritual activities, participating in community activities, and others.
Strategies to Improve Parenting Skills and Family Communication

Communication skills for parents with young children
• Get the child’s attention: Children can only concentrate on one thing at a time. Look directly at
them. Call their name. Give them time to pay attention and look at you. Touch their shoulder or
hand. Communicate at the same level if possible- sit down, bend down. Maintain eye contact. A
child’s attention span is shorter than an adult’s (3-4 minutes per year of life, up to about 20
minutes). This is reduced with stress, anxiety, distress, and fatigue.
• Keep things clear, simple and understandable: Keep requests short and clear. Too many
requests, and too many details will just confuse the child. Use short and clear statements.
Speak slowly and clearly. Use simple and familiar words that the child understands.
• Be firm and consistent: Clearly tell the child what you want him/her to do and why. Your tone
can be firm, but avoid being loud or angry. Ask the child if they understand; ask the child if there
is anything that is unclear to them. Use specific and concrete examples of what you want the
child to do. If possible, show and demonstrate to the child what you want done.
• Model appropriate behavior: Model the appropriate behavior that you want your child to learn
when he/she communicates with others. Use “please,” “thank you”and“you’re welcome.” Learn
to monitor your own behavior/s that your child sees.
• Avoid or minimize expression of negative emotions: Minimize or avoid expression s of anger,
frustration, irritability, and other emotions. Do not humiliate the child. Often, these interfere with
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communication, and are seldom constructive. Monitor your emotions, facial expressions,
gestures, body language, and tone of voice. Learn to control your emotions. Ask you spouse to
take over if needed. Apologize to your child for any uncontrolled emotional outbursts.
• Use more positive words than negative ones: Tell the child what to do, instead of what not to
do. Children follow and respond faster and more positively to positive requests.
• Praise and acknowledge good behavior: Let the child know that you do not just focus on their
wrong behavior. Recognize, praise, encourage, and reinforce good, positive behavior and
achievements. Do not over-focus on even the most inconsequential negative behavior.
• Use kind and nurturing words and actions: Nurturing, supportive, comforting and kind words and
actions make the child feel loved, promotes self-esteem, and creates a trusting relationship.
Create a nurturing environment that suports the child’s developmental needs.
• Listen attentively to the child: Talk with children; instead of talking at them. Develop and use
active listening skills (actively responding to your child’s thoughts and feelings with appropriate
verbal and non-verbal reactions). Understand your child. Understand the reasons for the child’s
problem behavior/s before reacting to it. Share similar experiences that you remember when
you were a child.
• Use requests, commands, and threats appropriately: Know when a situation requires a request
instead of a command, and vice-versa. Threats that cause significant fear and worry in a child
should be minimized. Agree with your spouse on what consequences to impose on problem
behavior/s. Natural consequences are natural results of a behavior (eg if a child breaks a toy on
purpose then he loses a toy). Logical consequences are consequences that both parents agree
to impose on problematic behavior (eg if a child does not do his/her homework then he/she
cannot watch television).
Common Family Therapy Approaches in Palliative Care

• There is a variety of family intervention approaches. The three most commonly used in palliative
care are the structural, systemic-strategic, and the cognitive-behavioral approaches.
• Structural Approach
The focus is on the present family structure, characterized by patterns of interactions.
Interactions are analyzed to determine if they have negative or positive effects and influences
on various issues and problems. Problematic patterns of interactions are replaced with more
flexible and effective ones. Excessive closeness (enmeshment) or excessive distance
(disengagement) are manifestations of dysfunction.
Major Proponent: Salvador Minuchin
• Systemic-Strategic
Problematic behavior is embedded in the family system’s patterns of communication and
relationships. Ineffective responses to a problem, becomes part of the problem itself.
Problematic patterns of interactions are disrupted, while effective patterns are strengthened.
Questions to determine relationships (circular questioning), reframing, externalizing blame, and
use of positive connotations are some of the techniques which are commonly used.
Major Proponents: Mara Selvini-Palazolli et al (Milan Group), Jay Haley, Cloe Madanes
• Cognitive-Behavioral
The focus is on cognitions that lead to problematic emotional and behavioral responses.
Approach is problem and solution focused. Skills training, cognition/ emotion/ behavior
monitoring, homeworks and task assignments are commonly used.
Major Proponents: Gerald Patterson, James Alexander
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Basic Family Intervention Process
• Assessment: Assess the family in terms of its history, structure (adaptability, cohesion,
boundaries), communication (clarity, emotional expression, problem solving), and regulatory
function. (also see section on family assessment, chapter 1)
• Identification of Underlying Problems: Based on the family assessment, determine what
problems and factors are related to the problem/s being addressed. Determine which factors
and problems are related to the patient and family’s suffering, and quality of life. As families
react to the life threatinening illness and the possibility of death of one of a family member,
healthy functional families will primarily require caring and supportive counseling and education;
while unhealthy dysfunctional families will also require interventions directed at family system
and process problems.
• Immediate Problems: First address the problems which need immediate attention using
appropriate non-pharmacological and/or pharmacological interventions.
• Family Education: Family members are educated about problems/ issues and their
management. Instructions and explanations should be clear, understandable and feasible.
Parent management training and education are very helpful especially in families with young
children or adolescents. This can include counseling and education on: setting limits and rules,
promoting a child’s independence, nurturing development, listening and communicating with the
child, knowing the child’s developmental stage and needs, and others.
• Family Interventions: Family system and process interventions usually use a structural,
systemic-strategic, cognitive-behavioral approach, or a combination of these approaches. If the
patient has a very poor prognosis, then the palliative care specialist should first focus on family
problems that directly contribute to the patient’s suffering and worsen the patient’s quality of life.
• Other Interventions: Other interventions are usually implemented together with the family
system and process interventions. These may include: interventions for each individual family
member, interventions for the couple (marital interventions), and interventions for young
children and adolescents.
• Duration and Discharge: Many problems and issues respond well to interventions which are
provided as part of a palliative care management plan. Many families do well and are
discharged stable and well after bereavement care is provided by the palliative care team.
However, families with severe, chronic, or multiple problems will need continued long-term care
and management through family care specialists.
Brief Strategic Family Therapy (BSFT)

• Brief Strategic Family Therapy (BSFT) is based on the following principles:
--- Family Systems: the family is a system with interrelated parts; the behavior of each part
(family member) can be understood in the context of the family system; and interventions are
implemented at the family system level.
--- Family Structure: refers to the repetitive patterns of interactions in the family system; habitual
ways in which family members behave with one oanother; patterns of interactions can have
positive or negative effects on the family and/or its members; and interventions are
implemented to correct problematic patterns of interactions, and augment helpful patterns of
interactions.
--- Strategic Approach: strategic approach uses interventions that are: practical, problem
focused, and planned. Practical interventions are interventions that can quickly and effectively
achieve the desired structural changes. Strategic interventions focus on one or a few problems
that are most important, and targets only those interactions that most directly influence
(positively or negatively influence) the problem/s. Well planned interventions are practical, and
strategic interventions formulated and planned by the specialist/ counselor to help the family
and the patient.
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--- Process Oriented: instead of focusing only on the content- only the specific and concrete
facts of what happened (eg what the son said said when he shouted at his mother), BSFT
focuses on the interactions- or the process (eg who were involved in the conflict, who sided with
whom, what was the underlying power relationship/s, when did it occur, what caused it, what
was communicated and how was it communicated- verbal and nonverbal/ emotion/ tone, what
was happening before and what happened after the shouting incident).
Methods of BSFT:
• Joining: Engaging or joining starts during the first contact with the family. It occurs at 2 levels:
individual level (establishing relationships with each family member who are participating in the
BSFT); and family level (establishing a relationship with the family system). In palliative care,
the episodes of crisis allow the specialist/ counselor to quickly gain rapport with the family that
he/she is trying to help at a time of great need.
Joining involves:
- Empathy and the ability to address the individual and the family’s needs;
- Maintenance (supporting the existing family structure- including power structure, and
respecting the family’s rules of behavior);
- Tracking (learning how the family interacts-process, and the content of their interactions-
such as what they talk about, and using these to enter the family system and develop a plan for
the family); and
- Mimesis (matching the characteristics, mood, style, and tempo of family interactions; this
may include: matching the family’s behavior, manner of speaking and vocabulary, style of
dressing, and others).
• Assessment: determining the structure or patterns of interaction that influence the problem/s.
Families are encouraged to interact freely as the specialist/ counselor observes and analyzes
the interactions along 5 dimensions.
Dimensions of Family Interactions (and examples of possible problems):
Structure: Hierarchy/ Leadership (eg wife is much more powerful than husband, child is too
powerful vs parents); Behavior control (eg inappropriate or ineffective behavior control when
needed); Guidance/Nurturance (eg parent are poor role models, lack of guidance or nurturing
for members); Marital Alliance (eg poor marital relationship, marital conflicts); Executive
subsystem (eg lack of decision making subsystem); Sibling alliance/ Sibling subsystem (eg poor
sibling relations, conflicts); Triangulation (eg child in the middle of a conflict between his
parents); Communication (eg limited or ineffective family communication)
Resonance: Enmeshment (excessively close physical, psychological, or emotional
boundaries between family members); Disengagement (excessively distant physical,
psychological, or emotional boundaries between family members)
Developmental Stage: Parenting (eg immature parent); Children (child is treated or acts as if
he/she is too old- many adult tasks, parentlike behavior; child is treated or acts as if he/she is
too young- restricted, limited responsibilities, not required to act responsibly appropriate for
his/her age); Extended Family (eg members of extended family challenges parental authority,
grandparents treat parents like a child)
Identified Patient: Negativity (family members are critical about the patient); Centrality (family
is organized around the patient and his/her problems; patient is always the central focus of
activities and conversations); Support (eg lack of support or not protective of the patient, overly
protective of the patient)
Conflict Resolution: Denial/Avoidance (denial or avoidance of conflicts by family); Diffusion
(family moves from one conflict to another without achieving any adequate resolution of any one
problem); Emergence Without Resolution (family engages in an in depth exploration of a
problem/ conflict but is not able to achieve adequate resolution); Negativity/ Conflict
(interactions are critical and hostile).
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--- Enactments: In order to assess the family’s typical pattens of interactions, the specialist/
counselor allows the family to interact as it normally does at home- these are called
“enactments”. The enactment may be spontaneous, or the specialist/ counselor may ask the
family to discuss something. The family’s description of how they interact can be different from
its actual interactions. In palliative care, the episodes of crisis present emotionally charged
situations that give rise to enactments which provide important information about problematic
patterns of interactions.
• Managing Problematic Interactions/ Restructuring:
Working in the Present: the focus is on the present interactions that occur in the family.
During an enactment, the specialist/ counselor observes the family’s present patterns of
interactions directly; and problematic interactions can then be restructured when the specialist/
counselor intervenes to facilitate the development of more positive patterns of interactions.
Reframing/ Cognitive Restructuring: Reframing creates an alternative frame of reference, or
perspective, to replace the one which the family is using. The specialist/ counselor presents a
new perspective for the family to use; and this change in perceptions and meaning helps the
family change its interactions. Negativity can be reframed into positive perceptions and
meanings (eg a child’s anger towards a parent as being ultimately based on love, fighting as an
attempt to reach out and establish a connection with one another, a parent’s frustration and
criticism of the child as the parent’s desire to help the child become strong and responsible- “I
see that you are worried about your child. I know that you care about him, and you want him to
become strong and successful in life; and that is why you are frustrated about his actions.”).
Reversals: Reversals change a pattern of interaction by asking one or more family members
to do or say the “reverse” or opposite of what they usually would; this then breaks up the
problematic pattern and creates a new pattern of interaction (eg When the wife nags her
husband, the husband becomes angry and shouts at his wife; the wife also becomes angry and
shouts back, and fighting begins. The counselor may ask the wife to say “I love you when you’re
angry” instead of being angry and shouting back.)
Working with Boundaries and Alliances: A boundary is a psychosocial “wall” around a group
of people who are allied with each other, which separates the group from people who are not
allied with it. The specialist/ counselor changes the maladaptive alliances and boundaries that
exist in the family in a smooth and usually subtle manner. Shifting boundaries may involve:
loosening some boundaries, and strengthening others. The counselor should aim for clear
boundaries which allow independence and privacy, but not too rigid so that shared experiences
are allowed. Disengaged members may require a loosening of boundaries to bring them closer
together; while enmeshed members may require a strengthening of boundaries (eg an alliance
between an overly protective grandmother and a child, and a disengaged parent- the counselor
may encourage the parent to have positive activities with the child).
Problematic boundaries may also exist between the family and the outside world. Overly rigid
boundaries prevent positive interactions with the outside world, and very weak boundaries allow
outsiders to excessively influence the family. Parents, who do not interact with a teen-age
child’s friends- very rigid boundaries, may be encouraged by the counselor to do so.
Behavioral Contracting: The specialist/ counselor can encourage the family members to
negotiate on a clear set of rules, and consequences if a member breaks a rule. Family
members are encouraged to follow and maintain these rules.
Detriangulation: Triangulation occurs when a third person gets involved in a conflict between
two other family members. The third person may get involved in an alliance with one member,
and be in conflict with the other. Triangulation can be an obstacle to conflict resolution;
therefore, the specialist/ counselor breaks up the triangle. The resulting dyad (two conflicting
members) can then be resolved more easily. Detriangulation can be achieved by keeping the
third member out of discussions between the dyad (eg When the parents begin to argue, the
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daughter begins to act disrespectfully towards one parent. The specialist/ counselor tries to limit
the daughter’s participation to allow the parents to argue and resolve their conflict without the
daughter’s interference). The specialist/ counselor should also avoid being triangulated, which
can limit his/her ability to restructure alliances and interactions.
Opening closed systems: In some families, problems and conflicts are not openly expressed.
The specialist/ couinselor helps the family to bring the conflict out into the open, so that it can
be discussed and resolved.
Tasks: Tasks/ homeworks/ assignments can be used by the specialist/ counselor (eg asking
a disengaged mother to do positive activities with the daughter; and then asking the
grandmother to work with the mother in developing behavioral rules). The family members may
be asked to first perform the task during the counseling session, while the counselor helps and
guides them; later they are asked to perform the task outside of the session (a homework or
assignment). The counselor helps the family overcome the difficulties in performing the
assigned tasks. If the family fails to perform the task due to obstacles and difficulties, then the
counselor should help the family overcome these newly discovered obstacles and difficulties.
Group-based Interventions
• Group based interventions are psychosocial interventions that involve a group of people and
makes use of group interaction to bring about beneficial change/s or outcomes.
• The approach may: focus on individual group members, focus on interactions between
members, or focus on group processes and the group as a whole.
• Similar to family interventions, group based interventions involves the analysis of content and/or
process. Many family centered interventions and approaches can be used for groups.
• Advantages of group based interventions:
group interactions can quickly reveal- a person’s negative patterns of thoughts, feelings and/or
behaviors; the group can give feedback and confront the person about his/her negative
patterns; feedback and observations from several people are more likely accepted by the
person; group members can empathize with and support each other; members can learn better
and more appropriate ways to communicate, behave, and interact; alternative models and ways
of thinking, feeling and behaving are presented by the group; less risk for regression compared
to individual based interventions.
• Possible disadvantages of group based interventions:
difficulty in protecting privacy and confidentiality; the person gets less exclusive time from the
specialist/ counselor compared to individual based interventions; difficulty in ensuring
participation and attendance; some members who have social difficulties may feel left out; and
problematic and/or disruptive members can hinder the progress of the entire group.
• Group based interventions can be used in combination with other interventions such as:
individual counseling and interventions, family centered counseling and interventions, and
pharmacologic interventions.
• Basic Guide for Group Meetings
--- Make all the necessary preparations. Clearly determine the context of the meeting
(including time, place, purpose).
--- Know and keep in mind the pertinent information about each group member. Each group
member also has their own “context”- or their own personal issues and problems.
--- Focus on what is happening during the course of group work- have a “here and now” focus.
Also ask yourself why it is happening, and what does it mean? Everything that happens in a
group has something to do with the structure and dynamics of the group.
--- Try to determine the underlying issues and theme/s. Listen to both verbal and non-verbal
communication; and observe each member’s behaviors and reactions. Observe the group’s
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structure and pattern of interactions.
--- Be aware of your own reactions to what is happening in the group.
• Four Stages of Group Development:
Stages overlap, with no clear boundaries between stages. Developmental issues in each stage
are usually never completely resolved; and groups can periodically cycle through these stages
as different conflicts and issues are experienced by the group. The specialist/ counselor should
promote trust, and help members discover a common ground.
--- First Stage: getting to know each other; searching for common goal/s and purpose;
understanding the basic concepts; developing and understanding the ground rules. Members
are concerned about being accepted. The specialist/ counselor should promote trust, and help
members discover a common ground.
--- Second Stage: members trying to gain control or dominance. Members are concerned about
asserting their individuality. There can be conflicts, criticisms, and hostility toward one another
(including the counselor) and the group as a whole. The specialist/ counselor should promote
tolerance, as well as encourage and guide confrontation.
--- Third Stage: after the previous stage of conflicts, the specialist/ counselor has guided the
group to become a mature working group that is characterized by trust, cooperation, openness,
tolerance, empathy, compassion, understanding, flexibility, focus, and respect. There is a sense
of ‘group spirit’ and cohesion.
--- Fourth Stage: the final stage which involves the termination of the group intervention. The
specialist/ counselor should help the group adjust to the impending termination of the group.
Brief Focal Group Interventions

• Focal Group Interventions are goal oriented, structured interventions, usually with a significant
educational component, involving homogenous groups. They tend to have specific and limited
targeted issues, and use the most efficient methods and interventions (usually consisting of
structured exercises, and homework) in order to achieve rapid change. They also tend to
discourage transference issues as compared to more traditional group-based interventions.
• Examples of Brief Focal Group Interventions include: Bereavement Groups, Depression
Groups, Parenting Groups, Groups for Adults with Advanced Heart Failure, Groups for
Adolescents with Cancer, and others.
• The palliative care specialist determines the time duration, requirements for inclusion in the
group, goals, objectives, and the structure and component interventions. Most are time-limited.
• The structure of a brief focal group intervention includes:
-- Definition of the Problem/s to be Targetted
-- Selection and Screening of Group Members: decide on the composition of the group, good
selection of members prevents problems later on.
-- Time and Duration: the number of meetings, time for each meeting (usually 1-2 hours long),
and duration (from a few weeks to 12 weeks).
-- Structure: closed vs open to new members, activities, optimal group size, setting, etc
-- Goals and Objectives: Develop long term goals aimed at resolving the target problem/s.
Develop 2 or more specific objectives a developed for each long term goal as steps toward
achieving these goals.
-- Ground rules: such as continuity, punctuality, attendance, honesty, openness, etc.
The group should agree on the ground rules.
Ground rules may include the following: attend meetings/ avoid absences; be punctual; avoid
leaving before the meeting ends; actively participate; respect and protect the privacy and
confidentiality of group members; use interactions therapeutically; stay with the group for the
entire duration of the intervention (until the last planned session); if one needs to leave the
group, he/she should give himself/herself sufficient time to say good-bye to the group, and to
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help the group adjust and understand his/her reasons for leaving.
-- Introduction and Orientation: getting started
-- Content and Interventions: One or more interventions are selected to achieve each objective.
Interventions may involve the learning of a concept (eg grief, bereavement, depression,
anxiety), or a skill (eg monitoring mood, relaxation, communication). Each concept and skill is
learned in a structured manner through (educational sessions, lectures, structured exercises,
and homework).
-- Monitoring and Determining Response and Change
-- Preventing and Managing Relapse and Resistance
Activity Group Interventions

• Simple activity group interventions are done using a permissive, supportive, and empathic
approach aimed at observing the behavior, communication, and interactions. There is little
structured activity and the specialist only intervenes when needed (eg to prevent harm).
• Activity-Counseling group interventions begin with group activity (or group play), followed by a
structured discussion or counseling. During counseling, the specialist uses the subject’s
experiences during group activity (eg fantasy during a children’s play activity) to further assess
the subject, explore various issues, and address psychosocial problems (eg providing meaning,
insight, and interpretation). Kinetic groups for children begins with exercises or games, followed
by discussion and counseling.
Storytelling activities, puppet plays, and making emblems allow the subject to express their
issues and problems in a non-threatening way.
• Family genograms can be constructed, and then shared with the group. The specialist/
counselor and other group members can provide support and encouragement as the subject
shares his/ her problems and issues with the group. This activity can also be followed by a
period of discussion and counseling.
Support Groups
• Be aware of locally active support groups and provide information to patients and their families.
• In good functioning groups, participants meet others who have similar experiences. Support is
gained from each other. Members can share feelings and insights, and develop new ways of
thinking, feeling, behaving, or coping as they interact with each other.
Spiritual Problems
Palliative care is also focussed on hope, quality of life, psychosocial support, spiritual support and
dignity. It encourages good communication about end-of-life issues between patients, families, and
their caregivers. It provides comfort while it addresses loss and impending death; and alleviates
psychological, social, and spiritual suffering.
It is important to monitor spirituality over the course of the illness. Issues and problems arise at
different points for patients and families. Some already have answers to existential questions
before illness alters their lives; some only begin to reflect after the severity of the disease is
understood; some prefer not to entertain them completely.For some, it is enough to have their
spiritual needs and resources acknowledged by the palliative care providers. Others will want to
examine the significance and meaning of illness and life. Helping patients and families explore the
meaning of illness and life is best done by palliative care team members with knowledge in
processes of self-understanding, changing perceptions, and spiritual development: this may involve
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the help of psychologists, counsellors, and pastoral care workers. Referral to a priest or pastor is
appropriate for patients and families who would appreciate their care.
Spiritual care offers help in exploring spiritual issues, supports a search for meaning, and supports
the relationships and beliefs that help improve life. It may involve helping patients and families
develop a helpful sense of self, or helping them re-examine fundamental beliefs. Spiritual care is
not imposed, but it is offered. Palliative care providers are in a position to offer spiritual care,
precisely because they are involved in the illnesses and experiences that disrupt patients’ and
families’ lives. Spiritual assistance must be experienced as a part of palliative care, and not as an
intrusion. It is an important principle of spiritual care that we respect the way people go about
searching for answers, for the search and the process matters as much as the content itself
Questions that Reflect Common Spiritual Issues

• Why am I here? Have lived for nothing? Does my life have any meaning?
• Am I part of something larger than myself? Does a higher power such as God exist, and what is
my relationship to that power?
• Why do I (or my loved one) have to suffer? Is suffering a punishment for something I’ve done?
Am I to blame for the suffering of my loved ones? How can I find meaning in my current situation
and transcend it?
• Why do I have to die? Does death have any meaning? What happens after I die?
Spirituality and Religion
Spirituality and religion can significantly influence adjustment and symptom experience. Religious
and spiritual coping are associated with less discomfort, hostility, anxiety, depression and social
isolation. They are associated with less distress, and better quality of life and life satisfaction
regardless of the threat of illness and death. A sense of meaning and peace is associated with an
ability to continue to enjoy life despite significant discomfort and disability. Spirituality can provide a
sense of personal growth. Positive religious involvement and spirituality appear to be associated
with better health and longer life expectancy; while spiritual distress negatively affects health
status.
Spirituality
Spirituality is a broader, more inclusive concept than religion. Some define spirituality to mean
extraordinary and profound mystical experiences; others focus on common and accessible
feelings, such as a sense of inner peace, existential meaning, and purpose in life; or a sense of
awe with nature. It has also been associated with a sense of faith, and a sense of connectedness
to others or to God. Spirituality allows one to experience a sense of transcendence in life. There is
a continuum of spiritual experiences, from the common and accessible to the extraordinary and
profound.
Religion
Religions are structured belief systems that address universal spiritual questions. They provide
frameworks for making sense of ultimate questions of meaning. Religious rites, rituals, and acts of
worship are ways of expressing these religious beliefs. Religious beliefs, rituals, and practices can
be helpful sources of transcendence, hope, meaning and comfort.
Implications of the “spirituality-religion” relationship for palliative medicine
•
A patient’s expression of spirituality may or may not involve religion.
•
Palliative care plans should identify a patient’s spiritual needs as well as religious concerns
and needs.
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•
Interventions to alleviate spiritual pain should be based on the patient’s belief system, whether
or not it involves a specific religious framework of beliefs and meaning.
Types of individuals based on spiritual and religious experiences

1. Religious individuals who value religious faith, spiritual well-being, and the meaning of life.
2. Existential individuals who value spiritual well-being but not religious faith.
3. Nonspiritual individuals who do not value religiousness, spirituality, or a sense of the meaning
of life. Individuals in this group are more likely to become more distressed about their illness and
experience worse adjustment compared to those in the other groups.
Spiritual Assessment and Supportive Spiritual Counselling

(Hay, 1996; AAHPM, 2003; Puchalski et al, 2000)
Initiate Spiritual Discussions

• Patients may initiate discussions about their spiritual issues and problems; but some may find
these difficult to initiate and discuss. Be aware of behavioral and verbal cues. Behavioral cues
include: agitation, anger, irritation, apathy, depression, social withdrawal, isolation, fear, and
anxiety. Verbal cues may include: asking for medications “to put me to sleep”. Patients often
worry about being a burden to their family. Let the patient know that you are willing to talk
about his/her spiritual concerns.
• Use any of the four meaning-making categories to begin the conversation:
1.Remembering: "When my father was dying, he was worried that he had not lived as he
would have wanted. Do you enjoy remembering your life? Are there some memories that
bother you?"
2. Reconciliation: "Are there any people with whom you would like to see or talk to? Anyone
(even deceased people) with whom you would like to come to an understanding? Anyone you
need to say good-bye to?"
3. Reassessing: "I don't know how long you will live. May I help you enjoy the people and the
things in each day of your daily life as much as possible? What prevents you from cherishing
each day? Tell me when your pain (or discomfort) is too much, and I will help you with it." For
those patients who still need a purpose or a task to fulfill for others, a physician may ask, "Is
there some spiritual work you would like to do-I know some patients who could use your loving
thoughts or prayers."
4. Reunion: "Is there anything you look forward to? Do you believe in an afterlife (in heaven)?
Tell me what you think it might be like." For those who don't believe in an afterlife, "How would
you like us to remember you? What do you want us to remember of you? How is this world
different because it has received the gift of your presence in it?"
Assess Spirituality and Take a Spiritual History

• Take at least a brief but adequate spiritual history on every patient. There are many protocols
and models that can be used. The FICA and/or SPIRIT are most commonly used.
• Assess spirituality at each initial patient evaluation and address any identified problems and
issues. Continue to re-assess and manage these issues and problems at follow-up visits until
they are resolved.
• Determine how important spirituality is to the patient. Determine the patient’s spiritual values,
spiritual beliefs, and his/ her concept of spiritual growth and healing. For some, spiritual growth
is life-long process that becomes increasingly important when one experiences a serious life-
limiting illness.
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Choose the Appropriate Language
• During spiritual discussions, be cautious when using religion-specific language, discussing
religious doctrines, or quoting religious texts. Spirituality and religion are complementary
concepts, but they are not synonymous.
• Listen carefully to patients and families. Take your cues from them, and respect and support
what comforts them rather than what comforts you. For example, references to personal
salvation may seem comforting to you, but sometimes, they can trouble or offend members of
some religious traditions that has different views on salvation. Phrases such as “God never
sends us more than we can bear,” “Time heals all wounds,” or “It is God’s will,” may be very
comforting and helpful for some patients, but may not be acceptable to others and should be
used carefully.
• Avoid comments that may be interpreted as confrontational.
Respond to Belief Systems

• Be aware of personal beliefs and biases. Some physicians or other care providers may
become troubled, anxious or irritable when the subject of spirituality is raised; when
nonconfrontational, nondenominational or nontheistic approaches to spiritual assessment and
intervention are planned and undertaken; or when a patient’s religious beliefs differ from their
own. Awareness of one’s own beliefs and biases helps prevent this problem. Your beliefs also
affect your encounters with patients; use your beliefs to help you make the doctor-patient
relationship more caring and humanistic.
• Respect an individual’s privacy regarding spiritual beliefs, and avoid forcefully imposing your
beliefs on others. Each individual’s belief system should be honored and respected, whether it
is religious, philosophical, or political in nature.
• In general, be careful with intensive discussions of specific religious doctrines and ideas,
unless the patient indicates the particular doctrine is a source of significant spiritual pain or
comfort. Individual beliefs vary greatly, even between two people who share a common
religious tradition. Refer to a spiritual or religious caregiver (eg priest, pastor, chaplain) if the
patient has questions and problems about religious doctrines and ideas.
• Help patients discover hope and strength within their own belief systems and practices. Help
the patient explore their current and past sources of strength and support, including religious
or spiritual practices that help them. Do not focus on your own beliefs, but on the beliefs of the
patient, so as not to hinder and interfere with the patient’s own spiritual growth and healing.
FICA Spiritual Assessment Tool (Puchalski et al, 2000)
F Faith or Beliefs
Do you consider yourself spiritual or religious? Both? Neither?
What things do you believe in that give meaning to your life?
What is your faith or belief?
I Importance and Influence of Beliefs
Is your faith or belief important in your life?
What influence does your faith or belief have on how you take care of yourself?
How have your beliefs influenced your behavior during this illness?
What role do your beliefs play in regaining your health?
C Community
Are you part of a spiritual or religious community?
Does the community provide support for you? How?
Is there a person or group of people you really love or who are really important to you?
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A Address Care Issues
Would you like me, as your healthcare provider, to address these issues while caring for you?
Note: The FICA, developed by Christina Puchalski, MD, can be effective regardless of a patient’s
system of belief and can help patients voice concerns about meaning and purpose in their lives,
even when they don’t recognize their concerns as being “spiritual.” It is useful in a time-constrained
setting, where 2 minutes may be all that is allotted for a spiritual history, eg during a routine visit.
SPIRIT Spiritual History Tool (Maugans, 1997; Ambuel and Weissman, 1999)
S Spiritual Belief System

Do you have a formal religious affiliation? Can you describe this?
Do you follow a religious/ spiritual belief system that is different from that of your formal
religious affiliation? Can you describe this?
P Personal Spirituality
What are the beliefs and practices of your religion that you (and/or your family) personally
accept and follow? What are the beliefs and practices that you do not accept or follow?
What spiritual beliefs are most important to you?
What are your personal beliefs about life, illness, suffering and death?
Is your spirituality/religion important to you? Why/How is it important?
Is it important in your daily life? Why/How is it important?
I Integration with a Spiritual Community
Do you (and/or your family) belong to any religious or spiritual groups?
For each group, ask:
How do you participate in this group? What is your role?
Is this group important to you? Why/How is it important?
Is this group a source of support to you (and/or your family)? In what ways?
What types of support/ help can this group provide you (and/or your family)?
R Rituals, Religious Practices, and Restrictions
What spiritual and religious practices do you (and/or your family) do?
Prayer? Meditation? Attending religious services? Sacraments?
What things does your religion encourage? Discourage? Forbid?
How do you (and/or your family) feel about these restrictions?
Which ones do you (and/or your family) follow?
I Implications for Medical Care
Are there things related to medical care which your religion discourages or forbids?
How do you (and/or your family) feel about these restrictions?
Which ones do you (and/or your family) follow?
What aspects of your religion/spirituality do you like us to keep in mind when we care for you?
T Terminal Care Planning
Are there things related to terminal care that you wish to forgo or withheld because of your
religious/ spiritual beliefs? Things related to resuscitation? Things related to life prolonging
measures?
Are there religious or spiritual articles/ books/rituals/practices that you would like to be done
and available in the hospital and at home?
Are the religious rituals/practices that you want done at the time of death and after death?
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Spiritual Coping
Spiritual coping refers to the ways by which a patient’s spirituality can help alleviate distress and
suffering. The most common aspects of spiritual coping targeted by palliative care interventions
and support include: Peaceful Acceptance, Hope, Meaning and Purpose, Inner Strength, and
Sense of Control.
Spiritual Care Interventions

(Hay, 1989; AAHPM, 2003; Puchalski et al, 2000)
Basic supportive interventions

• Supportive Presence: Being with the patient and family to provide silent, caring support; and
without being judgemental.
• Coordination of Spiritual Care and Support: If the patient or the family requests, coordinate:
visits from family, friends, spiritual or religious counselors, priests, chaplains, or pastors; and
spiritual or religious rites, sacraments, and other activities. Facilitate access to spiritual or
religious articles, books, music, and videos. Avoid interrupting spiritual or religious activities.
• Active Listening and Supportive Communication: Engage in supportive conversation with the
patient and family. Closely monitor the patient or family’s comfort level during the conversation.
Clarify ideas and themes if needed. Be supportive, and caring always.
Provide Care and Support
• Relieve physical and psychosocial problems that exacerbate spiritual pain.
• Provide supportive presence. A supportive and compassionate presence means being wholly
present for the patient, completely attentive, and not allowing distractions to interfere with that
attention.
• Encourage a life review; and patiently listen to and help the patient explore his/ her life story.
Spiritual Healing
• Most patients have the capacity to heal spiritually. But palliative care providers can help
patients heal spiritually by helping patients identify and acknowledge spiritual problems; and by
providing interventions to alleviate specific causes and sources of spiritual distress.
• Spiritual healing begins with acknowledging spiritual pain.
• Spiritual healing includes: acknowledging and then letting go of the anger, guilt, hurt, and fear
that separate people from one another; finding ways of transcending the present situation,
often by finding a sense of larger meaning in it; and opening to an enlarged sense of
wholeness that transcends limiting roles and identities.
• Spiritual and religious practices can increase the capacity for spiritual healing. All religious
traditions have developed teachings, practices, and rituals to help spiritual healing.
Spiritual Exploration
• Help patients explore their spiritual issues. Help them formulate their own spiritual questions.
The process of exploring spiritual issues is in itself helpful and healing, even when some
questions remain unanswerable.
• Acknowledge the difficulty of coping with unanswerable spiritual questions. Acknowledge the
apparent difference from modern medical science which always seems to have answers and
explanations for everything.
• Acknowledge and respect the inherent mystery of spirituality. As the patient searches for
meaning, do not just quickly explain things away with medical facts and diagnoses; or simply
provide quick ready answers using portions of religious doctrines and teachings.
• For some patients, the sense of peace, the sense of being one with existence, and/ or the
sense of spiritual well being that results from spiritual exploration and healing, are more
important than being provided with intellectual (medical or religious) explanations.
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Search for Meaning and Purpose
• Encourage patients to tell their life stories as a way of helping them recognize themes and
elements that provide them with of purpose, value, worth, and meaning.
• Encourage reflection on past, current, and desired belief systems, or philosophies.
• Identify elements of these belief systems, or philosophies that are helpful. Strengthen and help
reintegrate these elements into the patients current belief system. Encourage the patient to
apply this more helpful belief system to his current situation. Encourage him to use it in his
search for purpose, value, worth, and meaning.
• The role of the palliative care specialist is to relieve distress and suffering, and not to teach
religious doctrine. Patients can experience periods of great spiritual distress and suffering,
regardless of their belief system or religious framework. Respect the patient’s own framework
of meaning- even if it is different from yours. Refer to a religious caregiver (eg priest, pastor,
chaplain) if the patient has questions and problems about religious teachings and doctrine.
• Caring relationships, meditation, prayer, as well as art, music, books, poetry, massage, and
relaxation exercises can help the patient achieve spiritual healing; and help the patient reach a
sense of peace, oneness with existence, and spiritual well-being, that makes any personal
misgivings, worries, fears and unanswerable questions, seem less significant.
Responding to Guilt, Regret, Shame, Trust, and Anger
• Some patients may have painful thoughts and feelings which they have long repressed- such
as issues of guilt, regret, shame, trust, and anger. When patients become significantly ill, these
thoughts and feelings manifest and cause suffering. Help the patient identify and acknowledge
these issues. These can cause as much, or even more distress and suffering than the physical
and psychosocial problems that the patient also has.
• Acknowledge the importance of these issues, and the distress and suffering that they can
cause. Do not just just push aside these issues by statements such as “You shouldn’t feel that
way.” For example, encourage forgiveness of self and others, instead of just telling the patient
to stop feeling guilty or angry.
• Help the patient deal with these issues. Supportive interventions, counseling, and a caring
environment are usually enough to help the patient deal with these issues.
Promote a Sense of Control, Hope, and Inner Strength
• Help patients identify things that have helped them in the past (e.g., use of spiritual or religious
practices, contact with nature, relationships, meaningful communication with others).
• Encourage life review. Help the patient explore of sources of strength, hope, and control in life.
• Explore and help resolve issues of guilt, blame, remorse, forgiveness, and reconciliation.
• Explore the patient’s spiritual history for a cause of distress. Some patients may feel
traumatized by past experiences that they relate to religion or spirituality. Some patients may
need to come to terms with experiences that led to their anger and sense of rejection.
• If the patient wants, arrange for access to books, video, or audio materials- about healing,
spirituality, meditation, and others- to enhance inner resources.
• Teach and encourage the use of helpful coping and adaptive techniques such as relaxation,
imagery, music, poetry, and devotional readings that focus on spiritual healing.
• Help patients explore and determine realistic goals in life such as going on a trip, writing his/ her
memoirs, or saying good-bye to friends and family. Help the patient achieve these goals;
reframe these goals into short-term tasks that can be accomplished.
Strengthen Spiritual and Religious Support Systems
• Evaluate the nature of the patient’s spiritual support system.
• Help resolve any breakdown or lack of support. Strengthen the patient’s spiritual and religious
support systems.
• Support meaningful relationships with others.
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Provide for Religious Needs
• Observe the patient’s special holy days, dietary restrictions, need for daily prayer or meditation,
hygiene and modesty requirements, and other important religious precepts.
• Acknowledge the positive healing effects of religious rituals and practices. Provide or arrange
for the following when appropriate:
— prayers that focus on healing, reconciliation, hope, strength, and other spiritual issues.
— sacraments of baptism, confirmation, marriage, and reconciliation; sacrament of the sick
ritualized confession, reconciliation, absolution of sins, asking for forgiveness
— laying on of hands
— devotional practices (e.g., meditation, prayer, turning toward Mecca, reading religious scriptures
from sources such as the Hebrew and Christian bibles, the Bhagavad-Gita, and the Koran)
Referral to Religious Caregivers and Professional Boundaries
• For patients who are suffering severe and deep spiritual pain, consider more intensive spiritual
and religious support and counseling. Facilitate and refer to chaplains, spiritual directors,
pastors and/ or other religious support groups and community resources whenever appropriate
and possible.
• Just as spirituality can help some patients cope with life-limiting illness, religious beliefs can
also be helpful. Religious beliefs can promote hope, acceptance, and inner strength (eg belief
on salvation). Religious doctrine and teachings can also help patients in their search for
meaning and purpose.
• Be aware of occasional pressures to transcend the boundary between providing palliative care
and providing religious guidance and support. For example, the patient and family may request
their physicians to pray with them. If the physician feels that a simple prayer would provide
comfort and relieve some of the patient and family’s distress, and if he/she is comfortable with
it, then it is reasonable to do so.
• Religious guidance, teaching, rituals, and observances are beyond the scope of the palliative
care specialist’s work. These are usually are best provided by a designated religious caregiver.
Certainly, physicians who are trained, prepared and willing to also function as religious
caregivers or teachers, can do so.
Three Dimensions of Spiritual Need (Kellhear,2000)
Situational transcendence: Patients want to make sense of and transcend their current situation.
They often desire purpose, hope, meaning and affirmation, mutuality, a sense of connection, and
social presence.
Moral and biographical transcendence: Patients want to “put things right,” to make sense of
their own lives, and to develop a sense of transcendent meaning for their existence. They often
desire peace and reconciliation, reunion with others, prayer, moral and social analysis, forgiveness,
and closure.
Religious transcendence: Patients want to achieve a sense of religious transcendence. They
often desire religious reconciliation, divine forgiveness and support, religious rites or sacraments,
visits by clergy, religious literature, discussion about God, eternal life, or hope.
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Meaninglessness and the Search for Meaning
A life threatening illness challenges the patient’s concepts that give meaning to one’s life and trhe
world around. If they are not adequate, the patient then begins his/her search for meaning.
The Search for Meaning
• The search for meaning can refer to: causal explanations (“Why do these things happen?”);
selective incidence explanation (“Why did it happen to me instead of someone else?”); and
responsibility explanation (“Am I responsible for what happened to me?).
Interpretations of Suffering (Foley, 1988)
• Punishment: “I am being puninshed for my sins.”
• Test: “This is a test of my faith.”
• Bad Luck: “It’s my bad luck.”
• Submission to the Laws of Nature: “It’s nature taking its course. I should allow nature ti take it’s
course.”
• Reisgnation to the Will of a Supreme Being: “It’s the will of God. It cannot be avoided.”
• Acceptance of the Human Condition: “Suffering is part of being human. It is a part of life.”
• Personal Growth: “This suffering helps me grow and be a better person.”
• Defensiveness and Denial: “I don’t want to think about it.”
• Minimization: “It could have been worse.”
• Divine Perspective: “If I can see things from God’s perspective, I know there’s a reason for this.”
• Redemption: “Suffering is a way for me to be closer to God.”
Strategies that People Commonly Use to Create Meaning
• Altruism: To leave the world a better place
• Dedication to a Cause: Can be a political, social, religious, environmental, or some other cause.
• Creativity: Can be artistic (eg painting, poetry, musical composition, etc), scientific (eg
inventions, theories, etc), or other expressions of creativity.
• Self-Actualization: Reaching one’s full potential.
• Self-Transcendence: To focus on things beyond oneself.
• Hedonism: Enjoy and appreciate life to the fullest.
Maintaining Hope
Herth Hope lndex (Farran et al, 1995)
Listed below are a number of statements. Read each statement and place an X in the box
that describes how much you agree with that statement rig/it now.
Strongly Disagree Agree Strongly
Disagree Agree
1. I have a positive outlook
toward life.
2. I have short, intermediate,
and/or long-range goals.
3. I feel all alone.
4. I can see a light in a tunnel.
5. I have faith that gives me
comfort.
6. I feel scared about my future.
7. I can recall happy/ joyful times.
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8. I have deep inner strength
9. I am able to give and receive
caring/love.
10. I have a sense of direction.
11. I believe that each day has
potential.
12. I feel my life has value and
worth.
Scoring:
All items except numbers 3 and 6 are scored as follows:
Strongly disagree = 1; Disagree = 2; Agree = 3; Strongly agree = 4
Items 3 and 6 are reverse scored as follows:
Strongly disagree = 4; Disagree = 3; Agree = 2; Strongly agree = 1
No specific score indicates whether or not a person has adequate hope. However, comparing a
patient’s responses over time can reveal important information. Discussing the results of each
completed index pro vides an opportunity for professional caregivers to gently probe selected
issues with patients and discuss possible interventions, including reframing hope during the
course of a terminal illness.
Strategies for Fostering Hope (Herth, 1990)

Provide comfort and relieve suffering.
• Relieve pain and other distressing symptoms.
• Acknowledge and address all causes of distress and suffering.
Develop caring and helpful relationships.
• Help the patient (and family) develop caring relationships with others.
• Help the patient (and family) develop relationships that promote a sense of being needed, a
sense of belonging and a sense of being part of something larger.
Set attainable goals and involve patients in decision making.
• Help the patient (and family) appreciate each day as it comes, recognize the small joys of the
present, develop a sense of purpose, direction, meaning and dignity in life. Redefine goals as
needed. As physical deterioration becomes more evident, the patient’s goals are likely to
gradually change from specific tangible goals, to less tangible goals such as the well-being of
others, sense of serenity, inner peace, and eternal rest.
Support spirituality.
• Regardless of specific religious beliefs, spirituality can provide a sense of meaning and hope.
• Support the use of meaningful religious rituals and practices when requested.
Identify valued personal attributes and promote the patient’s self worth.
• Identify personal attributes such as determination, courage, and serenity that promote the
patient’s self worth and help maintain hope.
• Preserve and protect the patient’s dignity.
When appropriate, use lighthearted humor.
• When appropriate, help patients develop a sense of humor and lightheartedness about their
situation. Patients often appreciate verbal or nonverbal expressions of delight, joy, or
cheerfulness from professional staff.
• First earn the family and patient’s trust and demonstrate concern, empathy, and respect for the
patient’s condition. Then, when appropriate, use humor and lightheartedness to provide a sense
of release from thoughts and fears about the disease and bring joy and hope to the patient and
family.
• Remind the patient and family that humor and laughter can be very helpful.
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Reminisce about life, and emphasize uplifting memories.
• Encourage the patient and family to remember pleasant moments (eg by sharing stories,
looking at photo albums). Encourage reminiscing about significant events such as the birth of a
child to help maintain hope.
Religious Care
• Unlike spiritual care, religious care can include discussion and teaching of religious beliefs and
doctrine.
• Religious care is generally beyond the scope of the palliative care specialist’s work. These are
are best provided by a trained religious caregiver. Certainly, physicians who are trained to give
religious instructions and guidance can also function as religious caregivers.
Elements of Religious Care

• Respect, Care, and Understanding
• Focus on existential and spiritual issues, and experiences
• Interpretation
Religious caregivers: Use their theological and religious knowledge and experience in order to
help the patient integrate his/ her experiences with the religious belief framework.
Palliative care specialists: Refer to a religious caregiver if possible. Be aware of the limits of
your knowledge and experience on religious doctrine and beliefs. Try to focus more on the
patient’s own belief framework. Help the patient explore, clarify, and improve his/ her belief
system; and help the patient integrate his/ her experiences with this belief framework.
• Deepening
The patient continues to grow and mature in religious belief. Deepening leads to spiritual
growth.
Existential Issues and Problems
Existentialism is a philosophical movement that claims that people are responsible for creating
meaning in their lives. Existential issues and problems are closely related to spiritual and religious
issues and problems.
In palliative care, important existential domains include:
• Meaninglessness: the condition that moves the patient to search for meaning and a sense of
self fulfilment; problems and issues include: demoralization, meaninglessness, futility, loss of
role in life, desire to die
• Existential Isolation: the separation between a person and others; ultimate isolation/ aloneness
and the need for social relations; according to existentialism, the separation between each
individual is unbridgeable, but caring relationships make the isolation bearable; problems and
issues include: isolation, aloneness, and alienation in life
• Freedom: freedom and responsibility in making choices in life, gives people control of their lives;
problems and issues include: loss of control, non-compliance to management plans,
indecisiveness, fear of dependency
• Death: in existentialism, impending death is difficult to handle, but it can also make life become
more real and intense; problems and issues include: death anxiety- fear of death and of the
process of dying, distress due to uncertainties, distress and anxiety in response to physical
symptoms
• Dignity: one’s sense of worth; problems and issues include: worthlessness, shame, fear of
being a burden, body image concerns
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• Mystery: respect for things that are unknowable, uncertain and the sacred; possible problems
and issues include: spiritual doubt and despair, loss of faith, loss of connection with a higher
being; lack of sense of transcendence, guilt
• Loss: acceptance of one’s loss; possible problems and issues include: complicated grief,
depression, intense emotionality
Management of Existential Problems

• Help the person explore, identify, and define his/her existential issues and problems.
• Help the person explore ways of responding to these issues and problems
• Help the person determine those aspects in his/her life that he/she values.
• Address spiritual issues and problems.
• Identify and manage any associated psychosocial problems such as: death anxiety and anxiety
or adjustment disorders; meaninglessness, spiritual doubt, or complicated grief and depression;
isolation and family dysfunction, lack of social support, or relationship problems; worthlessness
and adjustment disorder or depression
• Use appropriate interventions and techniques to address these issues.
Grief and Bereavement
Grief: The reaction to loss of someone or something that is closely tied to a person’s identity. Grief
may be in response to a physical, psychological, social, or spiritual loss. Each loss leads to its own
grief reaction. Grief reactions can be physical, psychological, social, or spiritual.
Psychological/emotional reactions can include anger, guilt, anxiety, and depression. Physical
reactions can include insomnia, loss of appetite, somatic complaints, or illness. Social reactions
can include family relationship problems, social withdrawal, or problems at school or at work.
Existential and spiritual peoblems can also occur. Grief depends on the nature and intensity of
attachment, and the situation surrounding the loss. Common characteristics of grief include
somatic distress, preoccupation with the image of the deceased, guilt, hostile reactions, and a loss
of the usual patterns of conduct.
Mourning: The process of adapting to a loss. It includes societal customs, rituals, or rules for
dealing with loss.
Bereavement: The period after a loss during which grief is experienced and mourning occurs. The
duration of bereavement depends on the intensity of the attachment to what is lost (eg the person
who died), and how much time was involved in anticipation of the loss.
Anticipatory grief: A grief reaction that occurs in anticipation of an impending loss. It is seen in
families of dying patients, although patients themselves can experience it. It may include symptoms
which are similar to that of grief after a loss. It provides individuals time to gradually absorb the
reality of the loss. Commonly seen with anticipatory grief are: depression, heightened concern for
the dying person, rehearsal of the death, and attempts to adjust to the consequences of the death.
Differentiating normal grief from more severe psychological problems: A useful way of
differentiating between a normal grief reaction and a more severe psychological problem is to
determine the severity of symptoms and adverse effects to the patient and family. To assist with
the diagnosis of depression in the presence of significant illness, the Endicott criteria (depressed
appearance, social withdrawal or decreased talkativeness, brooding, self-pity or pessimism, and a
lack of appropriate responsiveness in situations that would normally be pleasurable) can be used in
place of somatic symptoms which are also common in advanced illness (eg fatigue, anorexia,
weight loss and poor concentration).
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Tasks of Grief (Worden, 1991)
1. Accept the reality of the loss.

The task of accepting that the loss has occured, after the normal initial tendency to deny it. It does
not imply that the person has already come into terms with the loss. It implies that the person has
intellectually and emotionally accepted the reality of their loss. This is a painful but necessary
process that must occur before readjustment can begin. Physicians can help the person begin to
accept their loss and gain a sense of control over it by encouraging a discussion about the losses
experienced as a result of illness or death.
2. Experience the pain of the loss.
The task of giving up one’s efforts to deny or minimize grief and feeling the emotional reactions that
accompany grieving. Because such feelings are painful, the temptation is to cut short tile pain of
grief—to get it over with and go on with life prematurely. Caught in their own feelings of
helplessness, physicians, family members, and friends may encourage mourners to circumvent the
process with medication or distraction. To recover, however, mourners need to experience the
painful feelings of loss. Such feelings make the loss real; they define what was and is no more.
3. Adjust to an environment without the deceased.
The task of learning flow to live without the deceased, which can be a disturbing and painful
process that often takes longer than expected. As the bereaved person begins to appreciate all the
roles the deceased filled (e.g., friend, confidant, lover, bill payer, bed warmer, car washer, cook),
the sense of loss can he overwhelming. The bereaved may resent having to learn new tasks (e.g.,
grocery shopping, managing a bank account, arranging social occasions). However, with time,
most people are proud of their growing independence and newly learned skills. Moving from a state
of helplessness to one of responsibility for learning new skills is the basic requirement of this task.
4. Emotionally relocate the deceased and move on with life.
The task of redirecting emotional energy from the person who died to those who are living and to
satisfying hobbies and other activities. Successful relocation is associated with a gradual
reorganization of life to changed circumstances. Because mourners sometimes think that recovery
means forgetting the deceased, they may struggle to keep the deceased present by putting their
own lives on hold. However, recovery does not mean forgetting; it means gradually adjusting the
relationship with the deceased from one of presence to one of memory.
Complicated Grief
A complicated or pathological grief is a maladaptive form of grieving and bereavement. There may
be an increased duration and severity of grief reactions, resulting in an increased disruption of
psychosocial functioning. It may lead to significant psychiatric disorders (eg adjustment disorders,
major depression, substance abuse, and even posttraumatic stress disorder) and require more
intensive, multimodal therapies than uncomplicated grief. Complicated grief that leads to a
significant psychiatric disorder may require combined pharmacological and psychotherapeutic
interventions.
Risk Factors for Complicated Grief (Worden, 1991; Kissane, 2005)
Nature of the Loss: what was lost and the meaning of the loss
Reactions to loss vary depending on the particular meaning of the loss for a specific person. The
loss of a spouse generally may lead to disorganization, while the loss of a child may lead to intense
yearning and anger. The age of the deceased is also a factor; the death of a young child may lead
to complicated grief for the parents.
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Relationship and nature of attachment to what was lost
Type of relationship with the diseased. Ambivalent relationships, particularly when initial feelings of
relief are followed by feelings of anger and guilt, may lead to complicated grief. Overly dependent
and clinging relationships also leads to complicated grief. Complicated grief may also occur when
the deceased was the survivor’s primary source of self-worth and self-esteem (e.g., when a
dependent partner dies, the survivor may have difficulty finding a role to replace the lost role of
caretaker).
Circumstances surrounding the loss and manner of loss
Circumstances that sorrounded the death. Losses, including deaths, that are sudden, unexpected,
untimely, or multiple are more likely to lead to complicated grief. Deaths associated with suicide,
mutilation, or perceived threats to the bereaved person’s life may lead to complicated grieving
characterized by attempts to avoid, repress, or delay the grief reaction. The initial numbness that is
a part of normal grieving may persist for a long time. Delayed grief can cause episodes of intense
reactions to minor events.
History of previous problems
The grief responses in the past may predict responses to a loss. However, a normal uncomplicated
grief reaction to an expected and timely loss may not accurately predict reactions to an unexpected
and more traumatic loss.
A history of psychiatric illness, including major depression or anxiety disorders, increases the risk
of complicated grieving. Past or ongoing suicidal tendencies are associated with complicated grief.
Personality problems
The person’s character and personality; and how he/she copes with distress. Lack of trust in self
and others, poor coping skills, and personality problems can lead to complicated grief.
Social factors: family and community support network
Frequent moves, estrangement, geographic separation from other family members, or lack of
supportive networks (e.g., church or social groups) can adversely affect the grieving process. The
presence of caring family members who provide support for those most affected by the loss is a
predictor of good outcome. A dysfunctional family (eg conflicts, poor cohesion, poor
communication); and a lack of cultural norms with established models for mourning can adversely
affect the grieving process.
Major life changes
Losses that result in stressful major life changes (e.g., decreased wealth, moves, job changes,
changes in parental responsibilities) can adversely affect the grieving process.
Types of Complicated Grief
Chronic Grief
The process of grieving stopped and could not be resolved. Grief is not changing (i.e., the levels of
depression, anger, or guilt remain unchanged for months or years). A long history of unexplained
problems (eg pain, depression, or anxiety) which began with a loss. Multiple losses can result in
chronic serial grief, a devastating condition that results from the loss of several significant
relationships, one soon after another.
Delayed Grief
When losses overwhelm the ability to cope, a person may try to delay grief. Delayed grief is also
seen when a death is unexpected, violent, or the result of suicide or criminal act. Expressions of
grief are suppressed or inhibited. But minor events trigger intense reactions, even years after the
death; and responses to another more recent death may seem out of proportion to the degree of
loss. Unable to talk about the deceased without significant grief, even years after the death.
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Masked Grief
The person develops these grief symptoms/ reactions, but is unable to recognize them as related
to grief. Consider masked grief if there is/are:
• Avoidance of any emotion when discussing the deceased or one’s current situation
• Disabling nonaffective physical symptoms similar to those experienced by the deceased (e.g.,
pain, nausea, numbness, anorexia)
• Chronic changes in lifestyle (e.g., withdrawal from friends)
• Unexplained anxiety or depression
• Aberrant or maladaptive behaviors (e.g., unable to leave the house or panic attacks)
• Avoidance of the grave site, nonparticipation in death-related rituals such as funerals,
unwillingness to read cards of condolence, chronic unwillingness to move any of the deceased’s
material possessions
• Self-destructive behaviors (e.g. failure to care for self, abuse of alcohol or prescription drugs)
Exaggerated Grief
The person recognizes that the symptoms/ reactions are related to grief; but is completely
overwhelmed by them with severe and overwhelming: depression or anxiety, inability to
concentrate, helplessness and hopelessness, worthlessness and emptiness, irrational despair,
panic attacks, hobias about illness or death, mania, or even persistent thoughts of suicide.
Absent Grief
The person does not exhibit any grief symptoms/ reactions.
Inhibited Grief
A prolonged inhibition of some of the normal symptoms/ reactions of grief.
Conflicted grief
May occur when there is a dependent or ambivalent relationship with the deceased. Two common
manifestations are extreme anger and extreme guilt.
Bereavement
Separation and loss occur repeatedly throughout life. During bereavement, normal healing
processes are occurring to achieve adjustment and adaptation. Bereavement usually involve
disbelief or denial, followed by intense physical reactions of weeping and yearning. This may be
followed by loneliness and disturbed thought, with repeated replaying of the sad events. After some
time, reintegration and readjustment allow the bereaved person to take up life again with
confidence. But there is no definite sequence to follow, and emotions may fluctuate.
Phases of the Bereavement Process

The Bowlby and Parkes' model divides the bereavement process into four phases. The four phases
do not follow a set order. A person may experience several phases at one time.
1. Shock and numbness
Survivors feel shocked and numb. They frequently have difficulty believing that a death has
occurred and processing or comprehending the loss.
2. Yearning and Searching
Survivors experience separation anxiety and deny or are unable to accept the reality of the loss.
Survivors may try and search for the lost person, which results in eelings of frustration and
disappointment.
3. Disorganization and Despair
Survivors are easily distracted and may have difficulty concentrating and focusing on normal
activities. Survivors may also be depressed and have may find it difficult to planning for the future.
4. Reorganization and Recovery
Survivor begin to rebuild his or her life, reconcile and recover from the loss.
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The Brief Bereavement Interview
Responses to grief:
“You’ve faced a lot over the past several weeks. How has that been for you?”
“How have things been different for you?”
“Is there anything that has been especially troubling to you?”
Social support: “Has anyone been particularly helpful to you in the past month?”
Coping resources: “Are there any activities that have made this less difficult for you?”
Practical difficulties: “How are things around the house? With your finances?”
Processes of Mourning and the Complicated Bereavement Interview

Avoidance
Recognize the loss
“Tell me about your husband’s/wife’s death.”
“How was it for you after he/she died?”
Confrontation
React to the separation
“How has his/her death changed your life? How are you different?”
Recollect and reexperience the deceased and the relationship
“Tell me about your husband/wife.”
Relinquish the old attachments to the deceased
“What do you feel you’ve lost since he/she died?”
Accommodation
Readjust
“What have you done to help you cope with your husband’s/wife’s death?”
“How has your life changed since he/she died?”
Reinvest in the future
“What do you think the future holds for you?”
Management
Psychological, social, and spiritual/existential problems are identifiable in many patients, and family
members. Family-centred care that recognises family members are not only primary caregivers,
but also as second-order patients. Therapeutic interventions should be appropriate to the stage of
the disease and should be tailored to address individual needs. Regularly provide opportunities for
patients and family members to express their concerns, anxieties and preoccupations throughout
the course of care. Significant stress, hopelessness, helplessness, social isolation and failure to
share negative emotions lead to poor outcomes.
Coping skills and cognitive behaviour therapies may be more applicable to early stage disease,
while supportive psychotherapies which encourage the sharing of feelings about existential
concerns are more suited to patients with worsening disease. Facilitate adaptive grieving, and
acceptance of the possibility of death. Education and clarification of fears can promote a sense of
reality and control. Group therapies are cost-effective, provide a supportive network and are
acceptable to most patients and families.
Support after a loss usually comes from friends and family. For those who are experiencing
problems, specific interventions may be considered. Psychotherapeutic interventions include
individual and group methods. Common treatment methods include time-limited dynamic
psychotherapy, cognitive-behavioral intervention, hypnotherapy, and trauma desensitization.
Pharmacological treatments complement non-pharmacological interventions. Anxiolytics such as
benzodiazepines can relieve anxiety. Antidepressants can help in depressive disorders.
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Anticipatory grief Early bereavement (<1 month)
Encourage open discussion Elicit concerns about symptoms of grief
Clarify plans for future Reassure that symptoms of grief are normal
Assist with life review Assess social support
Acute grief Assess coping resources
Be present Identify practical or financial problems
Acknowledge own sense of loss Late bereavement (>1 month)
Provide time and permission to grieve Assess progress of mourning
Assess immediate plan Identify depression
Offer follow-up appointment Consider counseling
Consider pharmacotherapy
Bereavement support groups offer a safe and caring setting in which to express grief, facilitated
by someone who is not too close to the bereaved or the deceased person, and who is therefore not
required to share the burden personally. Members, who have all experienced loss, meet with a
trained facilitator to share their experiences and feelings. Many are searching for affirmation,
validation, support, and education. They want to know what they are experiencing and how to
manage it. Members of the group find support in these encounters through mutual understanding.
Grief counseling guides uncomplicated (normal) grief to a healthy completion of the tasks of
grieving within a reasonable time frame. Itcan be offered in individual or group settings.
The goals of grief counseling include:
• Helping the bereaved to accept the loss, often by helping them to talk about the loss and the
circumstances surrounding it.
• Helping the bereaved to identify and to express feelings related to the loss (e.g., anger, guilt,
anxiety, helplessness, sadness).
• Helping the bereaved to live without the deceased and to make independent decisions.
• Helping the bereaved to withdraw emotionally from the deceased and to begin new
relationships.
• Providing support and time for grieving at critical times such as birthdays and anniversaries.
• Normalizing appropriate grieving and explaining the range of individual differences.
• Providing continuous support.
• Helping the bereaved to understand his or her coping behavior and style.
• Identifying problematic coping mechanisms and making referrals for professional grief therapy.
Grief therapy is used with people who have abnormal or complicated grief reactions. The goal of
grief therapy is to identify and resolve the conflicts of separation that interfere with the completion
of the tasks of mourning. The conflicts of separation may be absent or masked as somatic or
behavioral symptoms; delayed, inhibited, excessive, or distorted mourning; conflicted or prolonged
grief; or unanticipated mourning (though this is usually not present with cancer deaths).
Grief therapy requires talking about the deceased, and recognizing whether there are minimal or
exaggerated emotions surrounding the loss. The focus of grief therapy is dependent on an
assessment of the four tasks of mourning.
Certain tasks of grief must be accomplished for the process of mourning to be completed. These
are: acceptance of the reality of the loss, working through and experiencing the physical and
emotional pain of grief, adjusting to an environment in which the deceased is missing, and
emotionally relocating the deceased and moving on with life.
Therapeutic interventions are aimed to help the individual to be able to: experience, express, and
integrate aspects of his/her grief reaction; develop effective ways of coping with grief; take care of
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his/her own health; continue to function well in one’s daily life; maintain and develop relationships
with others (family, friends, etc); develop healthy ways of remembering the deceased; and develop
a healthy self concept and world view.
The Family Focused Grief Therapy (FFGT) (Kissane et al, 1998)

Family Focused Grief Therapy (FFGT) is a preventive intervention for high risk families through
palliative care and bereavement. FFGT aims to optimize family functioning and facilitate the
sharing of grief, in order to minimize psychosocial morbidity. Family functioning can significantly
affect the psychosocial well-being of individual family members. FFGT approaches grief therapy
from the more usual individually-based approach to a systemic model.
Families are categorized into well-functioning, intermediate, and dysfunctional family classes. Well-
functioning families have been observed to carry low levels of psychosocial morbidity among their
members. Dysfunctional and intermediate families are at greater risk.
The FFGT program is brief, focused, and time-limited, usually extending flexibly across 6 to 18
months. The intervention attempts to enhance the family functioning through the exploration of the
family's cohesiveness, communication of thoughts and feelings, and resolution of conflict. As the
story of illness, experiences, and grief is shared, the impact on family functioning is observed.
FFGT can be divided into three phases: Assessment, involving identification of issues or
concerns relevant to the family and negotiation of a therapeutic plan to work on these concerns;
Intervention, focusing on agreed concerns; and Termination incorporating consolidation and
termination of therapy. The frequency and number of sessions are adapted to each family's context
and needs.
Children and Grief
Factors that influence a child’s grief: age, personality, stage of development, previous
experiences with death, relationship with the deceased, the cause of death, environment,
interaction and communication within the family, stability of family after the loss, how the child’s
care needs are met, opportunities to share and express feelings and memories, parent’s styles of
coping with stress, and the availability of supportive relationships with other adults
Developmental Stages and Grief Reactions

(based on work of Memorial Sloane Kettering Cancer Center)
Infancy to 2 Years
Development: Do not understand death, but separation from parent or primary caregiver can cause
distress.
Grief reaction: quietness, crankiness, decreased activity, poor sleep, and weight loss.
Complicated Grief: Severe persistent or worsening grief reaction, and/or separation anxiety from
surviving parents/caregivers.
2- 5 Years
Development: Early preoperational thinking – magical thinking. Communicates through play and
fantasy. Death is temporary; like sleeping; person continues to live in some ways. Separation from
parent or primary caregiver can cause distress, but will usually accept a competent substitute.
Grief reaction: Asks many questions (How does mommy eat?). Asks repeatedly when parent is
coming back, weeks or months after death (does not understand the permanence of death).
Problems with sleep, appetite, and bladder and bowel control – loss of toilet training. Fear of
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abandonment. Behavioral problems, regressive behavior, and tantrums. May get frightened by
prolonged, and/or strong expressions of grief by adults. Wants a “whole family” like other children
in preschool.
surviving parents/caregivers more than 6 months after the death.
6- 8 years
Development: Late preoperational thinking. Death is thought of as a bad person or spirit (scary
skeleton, ghost). Death is permanent and “scary thing that happens to people” (death is universal);
“it could happen to me”. May misunderstand cause and effect. May fear that “bad” thoughts, words,
or wishes may be harmful. Parents are primary source of self esteem.
Grief reaction: Curious and asks specific questions about death. Joyful remembering; likes pictures
of and stories about the dead person. Can mourn dead person as protector and provider of good
things, now living in another place; “mom is an angel in heaven.” Feeling of abandonment. Fears
rejection of peers in school (due to loss of source of self esteem). Refusal to attend school.
Aggressive problem behaviors. May worry about imaginary illnesses. Self-blame or guilt about
death; “Did I say or think something that caused the death?”
surviving parents/caregivers more than 3 months after the death. Persistent expression of wanting
to die to be with dead person. Regressive behavior.
9 to 11 Years
Development: Concrete operational thinking. Better understanding of cause and effect. Needs
detailed information about illness; cannot make inferences from limited information. Can use
compartmentalization and distraction; avoids strong emotions.Everyone will die. I will also die.
Death is permanent.
Grief reaction: Depression. Begins to feel anger. May feel shame. Anxiety over own death. Parent
is mourned as mentor, friend, cheerleader, coach, and advocate. Mood swings. Worried about
being different and rejected by peers. Appetite, sleeping problems. Regressive behaviors. Loss of
interest in outside activities. May feel a sense of dead parent’s presence. Impulsive behaviors.
Guilt about being alive (especially if a brother, sister, classmate, or friend died).
Complicated Grief: Severe persistent or worsening grief reaction, school performance, mood
problems, behavioral problems, more than 3 to 6 months after the death.
Early Adolescents, 12 to 14 Years

Development: Inconsistent but beginning formal operational thinking. Withdraws emotionally from
parents. Egocentric. Peer acceptance is very important. Ambivalent about independence and
dependence.
Grief Reaction: May be egocentric and callous about needs of sick parent, especially if they
interfere with activities with peers. Mourns parent as adviser, guide, and role model. Has strong
sense of dead parent’s presence; may even describe conversations with them. Desire to keep
clothes or posessions of dead person. Depression. Physical symptoms without underlying cause.
problems, behavioral problems beyond 6 months. Substance abuse. Alchoholism. Shift to
delinquent group of friends. Precocious sexual behavior.
Middle Adolescents, 15 to 17 Years

Development: Consistent use of formal operational thinking. Less ambivalent about independence.
Intimate supportive relationships with peers. More thoughtful, allocentric, and empathic about
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family and sick family member. May have problems when demands at home are excessive. Boys
want separation from parents, while girls maintain relations but alter them.
Grief Reaction: Grief has adult emotional characteristics but duration is shorter. May get
overwhelmed by surviving parent’s grief, worries, and emotional dependence. Mourn’s dead parent
for specific personal characteristics and/or for being supportive about one’s independence. Worries
about self – vulnerability to sickness and death. Fears about independence. Wants to fulfil dead
parent’s dreams for the adolescent. May have private dialogues with the dead parent.
problems, behavioral problems beyond 6 months. Substance abuse. Alchoholism. Shift to
delinquent group of friends. High risk sexual behavior, antisocial, and illegal activities.
Risk Factors for Complicated Grief in Children and Adolescents

• Concurrent stress
• Negative or nonsupportive relationship with the surviving parents and other family members
• Poor relationship with parent or family member who died
• Preexisting mental health problem; or mental health problem in surviving parent
• Violent, traumatic, or unexpected death
• Younger than 6 years, or between 12 to 14 years (early adolescent)
Management
• Relationship with Surviving Parent and Family
Help in developing a healthy relationship between the child and the surviving parent and/or
family that is characterized by open communication, warmth, caring, and positive experiences.
• Helping the Surviving Parent and Family Cope
Help the surviving parent and family cope, so that they can continue to function well and care
for the children.
• Support from Others
Encourage support from friends, peers, teachers, other adults, and relatives.
• Expressing Thoughts and Feelings
Allow children to express their thoughts and feelings about the dead parent or family member.
Support, guide, and help the child cope.
• Explanation of Death
Silence does not help children deal with loss. The explanation should be kept as simple as
possible; and based on their age and stage of development. Answer questions honestly and
directly. Provide constant reassurance (address fears or worries about the possibility that they
or other family members will also die).
• Correct Language
Use proper simple and easily understandable words when discussing death (e.g., cancer, died,
death). Euphemisms (e.g., “passed away”, “sleeping”, “we lost him/her”, “he/she has left us”)
may cause confusion and misinterpretation.
• Planning Rituals
Include children in the mourning rituals, which help memorialize loved ones. Participation in
activities which are comfortable for them should be encouraged, but not forced. Before
attending the funeral (wake, memorial service, etc.), explain what they should expect in
advance: appearance of the room, what they will see (casket, crying people), who might be
present, and what will happen. If the parent will not be able to give their child adequate attention
and guidance during the funeral, assign an adult family member or friend to care for the child.
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4 Evaluation and Management of Pain
Pain
The intensity and persistence of pain may be influenced by physical, emotional, and social and
other environmental stresses. Frequently, patients with cancer or noncancer pain experience
relatively short episodes of worsening pain, which are referred to as breakthrough or episodic pain.
Chronic pain can be thought of as consisting of two components: a relatively constant component
(baseline pain) and an intermittent component superimposed on the baseline pain (breakthrough
pain).
Pain negatively affects quality of life, usually affecting mobility, mood, personality, and social
relationships. Patients experience concomitant decreased overall physical and mental functioning,
depression, sleep disturbance, and fatigue. Optimal pain management frequently requires both
pharmacologic and nonpharmacologic interventions; and should involve patients and their families.
Four Components of Total Pain

P: Physical problems must be evaluated and managed.
A: Anxiety, anger, depression, and other psychological components of pain should be determined
and managed by the palliative care specialist.
I: Interpersonal and social problems, such as loneliness, financial stress, and family conflicts, are
important components of patient’s symptoms which should be managed appropriately.
N: Nonacceptance of approaching death, a sense of hopelessness, and meaninglessness can
cause severe spiritual suffering.
Notes
1. The components of total pain—physical, psychological, social, and spiritual -—interact with each
other; and each component contributes to total pain or suffering.
2. Assessments should include a history, physical examination, and use of pain assessment tools-
which which helps in the assessment and monitoring of a pain’s location, intensity, and quality.
Principles of Pain Assessment
• A comprehensive assessment of the patient with pain is essential to the development of a

management plan. The purpose of the initial assessment is to identify the causes, contributing
factors, and pathophysiology of the pain (ie, visceral, somatic, neuropathic) and to determine
the intensity of the pain and its impact on the patient's quality of life. An initial assessment must
include a detailed history, physical examination (including a neurologic exam), psychosocial
assessment, and adequate diagnostic evaluation.
• Because pain is a subjective experience, a patient's self-report, if possible, should be the
foundation of an initial assessment. Use open-ended questions, and listen carefully to what the
patient says. The input of family members and caregivers is often invaluable in the assessment
of a patient with cognitive disabilities.
• Use developmentally appropriate pain assessment tools done by the patient (or family/
caregiver if the patient is not able) to determine the site, intensity, and quality of each pain.
Determine the temporal features of the pain (onset, pattern, and course), its location (primary
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sites and patterns of radiation), its severity (using a descriptive or numeric scale), quality, and
factors that exacerbate or relieve the pain.
• Assess for pain due to noncancer-related problems (e.g., arthritis, pressure ulcers, wounds,
tension and migraine headaches, dental pain, surgery, injuries).
• Assess for psychosocial and spiritual pain(e.g., anxiety, depression, isolation, loss of meaning)
• Assess for cancer-related pain. (Pereira and Bruera, 1997)
— direct tumor effect (eg., bone metastases, nerve compression/infiltration, effect on organs)
— cancer treatment (e.g., surgery, radiotherapy, chemotherapy, medication side effects)
— pain unrelated to cancer or cancer therapy (e.g., arthritic pain, post-herpetic neuralgia)
• Back or neck pain is of particular concern in cancer, and imaging to rule out spinal cord
compression should be considered, even if the results of a careful neurological exam are
normal. Pain over the long bones should be imaged to rule out impending pathologic fracture.
• Reassess at regularly, especially after starting a new treatment, after a new report of pain or
change in the quality/intensity of pain, and at regular intervals after pharmacologic or
nonpharmacologic interventions.
• Treat pain empirically while testing and evaluating for its possible cause/s.
Acute and Chronic Pain
It is sometimes helpful to distinguish between acute and chronic pain. Criteria for chronicity vary;
but a useful one defines chronic pain as: pain lasting longer than 3 months, or any pain due to an
injury that lasts one month longer than expected from that injury (based on the usual time it takes
for healing). Although the time duration of 3 months is partly artificial, the distinction is useful in
helping the palliative care specialist assess for problems that occur with chronic pain and cause
further distress and disability.
Acute pain: An acute pain is sudden, possibly protective, and with a higher expectation for
recovery.
Chronic pain: Chronic pain is prolonged, disabling, with less expectation for recovery, and with a
higher potential for psychological and social problems, sleep problems, physical deconditioning.
Pain Syndromes
Different pain syndromes have distinct pathophysiological basis and respond differently to different
types of therapy. Bone and soft-tissue pain, often referred to as somatic pain, are experienced as
sharp and well localized and tend to respond to opiates and nonsteroidal anti-inflammatory drugs.
Visceral pain, such as the pain of bowel obstruction or bladder distention, is a poorly localized,
colicky pain that can be treated with antispasmodics and opiates. Neuropathic pain may be caused
by tumor infiltration, compression, and irritation of nerves, chemotherapy-induced neuropathy, or
postherpetic neuralgia. Neuropathic pain may respond to agents such as anticonvulsants that
modulate nerve conduction and transmission of pain signals.
Somatic / Tissue and Bone Pain

• Caused by activation of nociceptors that result in bone pain, muscle/soft tissue pain, etc.
• Character of pain: localized, constant or intermittent; usually gnawing, aching; occasionally
cramping, stabbing, or squeezing
• Treatment: Non-opioid and/or opioid analgesics but may require other adjuvants, palliative
radiotherapy/ surgery, and other procedures for adequate relief.
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Visceral Pain
• Caused by activation of nociceptors that result in gastric, colonic, or liver pain, etc.
• Character of pain: poorly localized, occasionally referred pain, occasionally well localized pain;
continuous/ persistent/ constant pain; aching, squeezing, cramping, colic, abdominal pain
• Treatment: Non-opioid and/or opioid analgesics, antispasmodics/ anticholinergics, or octreotide
Neuropathic Pain
• Caused by destruction/infiltration/compression of nerve tissue. Neuropathic pain generally
presents in two clinical manifestations:
Dysesthetic Pain (deafferentation pain)
• Character of pain: constant burning; occasionally radiates (e.g., post-herpetic pain)
• Treatment: Non-opioid and/or opioid analgesics + antidepressants and/or anticonvulsants
Neuralgic Pain
• Character of pain: paroxysms of lancinating pain; sharp, shooting pain (e.g., trigeminal neuralgia)
• Treatment: Non-opioid and/or opioid analgesics + anticonvulsanfs, antidepressants, other
adjuvants
Breakthrough and Incident Pain

• Ususally caused by activation of nociceptors such as those in bones and soft tissues that result in
pain upon movement. Breakthough pain is pain that occurs spontaneously; incident pain is
breakthrough pain that is due to movement.
• Character of pain: pain with movement, weight bearing, or stress
• Treatment: bolus analgesia before movement; occasionally, immobilization with splinting,
orthoses, or orthopedic surgery
Pain Assessment Tools

Pain Intensity Scales For Adults and Older Children
Wong-Baker Faces Scale for Pain Severity (0-10)
Visual Analog Scale (VAS)
No pain Pain as bad as it could

possibly be
Numeric Pain Intensity Scale (0—10)
Body Maps: Can be used to describe and document pain location; and even pain intensity and
pain characteristics (eg using different symbols for types of pain, or colors for pain intensity). Child
may be asked to indicate on a body illustration (or themselves) where their pain is.
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Brief Pain Assessment Inventory (Short Form)
(Pain Research Group, Univ. of Wisconsin)
1) Throughout our lives, most of us have had pain from time to time (such as minor headaches,
sprains, and toothaches). Have you had pain other than these everyday kinds of pain today?
1. Yes 2. No
2) On the diagram, shade in the areas where you feel pain. Put an X on the area that hurts the
most.
3) Please rate your pain by circling the one number that best describes your pain at its WORST in
the past 24 hours.
No Pain 0 1 2 3 4 5 6 7 8 9 10 Pain as bad as you can imagine
4) Please rate your pain by circling the one number that best describes your pain at its LEAST in
the past 24 hours.
5) Please rate your pain by circling the one number that best describes your pain on the
AVERAGE.
6) Please rate your pain by circling the one number that tells how much pain you have RIGHT
NOW.
7) What treatments or medications are you receiving for your pain?
8) In the past 24 hours, how much RELIEF have pain treatments or medications provided? Please
circle the one percentage that most shows how much.
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
No Relief Complete Relief
9) Circle the one number that describes how, during the past 24 hours, PAIN HAS INTERFERED
with your:
A. General Activity:
Does not interfere 0 1 2 3 4 5 6 7 8 9 10 Completely interferes
B. Mood
C. Walking ability
D. Normal work (includes both work outside the home and housework)
E. Relations with other people
F. Sleep
G. Enjoyment of life
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Pain and Symptom Diaries and Flow Sheets
The parents, caregivers, or even an older child can be asked to keep a journal, diary or a flow
sheet to monitor pain and other symptoms. The time, duration, character, and context in which the
symptom occurred (eg during an activity, movement, stress, other preceeding or possible
precipitating factors), pain intensity (may use simple pain scales), intervention/s used (including
medications), and response to the intervention/s can be recorded.
Chronic Pain Syndrome
Most patients with chronic pain can be treated effectively in a relatively standard manner. However
there is a group of chronic pain patients that is more difficult to manage and treat. These patients
may: have a history of, or an ongoing, psychosocial problem; appear to be extremely focused on
their pain; be poorly responsive to various treatment modalities; report severe exacerbation of pain
with little provocation; ask for increasingly high doses of opioids (or sedatives) for the drugs effect
their sensorium and not for analgesia; and may appear to be severely incapacitated by their pain.
Approach to Chronic Pain Syndrome
• Do a complete evaluation to identify all possible cause/s of pain.
• Stabilize, and then gradually decrease the doses of opioids, sedatives, and other tolerance
producing medications. If opioids are needed, use agents that cause less tolerance, and/or long
acting opioids instead of short acting ones.
• Consider non-tolerance producing psychoactive medications if needed for chronic pain (eg
antidepressants, anticonvulsants).
• Provide supportive and psychosocial care which may include interventions to relieve emotional
distress, improve coping and adaptation, and decrease pain behaviors.
Physical Interventions for Controlling Pain (Jacox et al, 1994; McCaffery and Beebe, 1989)
Noninvasive physical interventions can be used concurrently with drugs and other interventions to
manage pain.
Cutaneous Stimulation
• Heat. Avoid burns by wrapping the heat source (e.g., hot pack or heating pad) in dry towel.
Lying on an electric heating pad can result in burns. Heat should not be used on irradiated
tissue. Diathermy and ultrasound are generally not recommended over tumor sites- although
there is still no conclusive evidence that heat can increase tumor growth.
• Cold. Apply flexible ice packs that conform to body contours for periods not to exceed 15
minutes. Cold treatment may provide longer lasting relief than heat; but should not be used in
patients with peripheral vascular disease or on tissue damaged by radiation therapy.
• Massage, pressure, and vibration. These methods, which help the patient through distraction
or relaxation, sometimes increase pain before relief occurs. Massage should not be substituted
for exercise in ambulatory patients. Patients may not tolerate deep, strong pressure/ massage;
instead, consider light massage, light pressure, or vibration that is applied lightly.
Exercise
• Useful for treating subacute and chronic pain; strengthens weak muscles; mobilizes stiff joints;
helps restore coordination and balance; enhances patient comfort; and provides cardiovascular
conditioning. Therapists and trained family members or other caregivers can help functionally
limited patients with range-of-motion exercises to preserve strength, joint function, and mobility.
During acute pain, exercise should be limited to self administered range of motion. Weight-
bearing exercise should be avoided if bones are likely to fracture.
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Repositioning
• Reposition the immobilized patient frequently to maintain correct body alignment, alleviate pain,
and help prevent pressure ulcers.
Immobilization
• Use restriction of movement to manage acute pain or to stabilize fractures or otherwise
compromised limbs or joints. Use adjustable elastic or thermoplastic braces to help maintain
correct body alignment. Keep joints in position of maximal function rather than maximal range.
Avoid prolonged immobilization.
Counterstimulation
• Transcutaneous electrical nerve stimulation (TENS). Controlled, low-voltage electrical
stimulation applied to large peripheral nerve fibers via cutaneous electrodes to inhibit pain
transmission. Although the efficacy of TENS can be partially attributed to a placebo effect,
patients with mild pain may benefit from a trial of TENS.
• Acupuncture. Pain treated by inserting small, solid needles into the skin. Multiple randomized
controlled trials have demonstrated its efficacy in the control of dental pain, and evidence
suggests efficacy in other painful conditions and some nonpain symptoms such as nausea.
Acupuncture should only be attempted by a skilled professional. Because pain can signal
disease progression, infection, or treatment complications, patients should be encouraged to
report new pain problems to the healthcare team prior to using acupuncture.
Psychosocial Interventions for Controlling Pain

(Jacox et al, 1994; McCaffery and Beebe, 1989)
Psychosocial interventions are more likely to succeed when introduced early in the course of
illness, giving patients time to become proficient while they still have enough energy to practice.
Patients and families should try several interventions, then select one or two that are helpful.
Patient Education and Psychoeducation

• Psychoeducation involves providing adequate knowledge and correcting misconceptions about
pain and its management. Stress that almost all pain can be adequately managed. Oral and
written information should include: basic principles of pain, monitoring, assessment and
treatment.
Pain Diary
• The content of the diary is tailored based on management needs. This may include: pain
(episodes, triggers, intensity, character, location); use of medications and other techniques
(relaxation, ice, massage, etc) and response; mood, thoughts, behavioral responses to pain;
time spent and difficulty/ease in doing daily activities, hobbies, social activities with friends and
family, enjoyable activities, and important personal activities.
• Diaries describe the pain experience of the patient- and even the family, and help the palliative
care specialist (and the patient and family) manage pain. It can help in: determining pain
patterns; possible causes and precipitating factors; effectiveness of medications and other
interventions; and adverse reactions and complications of medications and interventions. It
also helps the palliative care specialist monitor and manage the patient (and family’s)
cognitive, emotional, and behavioral responses to pain.
Relaxation and Imagery
• Simple relaxation techniques can be used during episodes of brief pain (e.g., during
procedures) and when the patient’s ability to concentrate is compromised by severe pain, high
levels of anxiety, or fatigue. This may include breathing exercises, massage, and listening to
relaxing music.
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Cognitive Distraction and Reframing
• Cognitive distraction focuses attention on stimuli other than on the pain or the negative
emotions accompanying pain. Techniques include internal distractions (e.g., counting, praying,
or making self-statements such as “I can cope.’), or external distractions (e.g., music,
television, talking, listening to someone read). Cognitive reframing involves learning to monitor
and evaluate negative thoughts and replacing them with more positive thoughts and images.
Hypnosis and Imagery
• A hypnotic trance involves suspended peripheral awareness, focused concentration, and
responsiveness to suggestions of pain relief. Involves self-guided hypnosis or hypnotic
induction, and imagery.
Psychotherapy and Structured Support
• Some patients benefit from short-term psychotherapy. Poorly controlled pain, can lead to
depression, and thoughts of suicide. Patients who develop symptoms of clinical depression or
other adjustment disorders should receive a trial of psychotherapy.
Support Groups and Pastoral Counseling
• Provide information to patients and their families about locally active peer support groups.
Members of the palliative care team who specialize in pastoral counseling can provide more
intensive spiritual support for the patient and family.
Modified Analgesic Ladder for Chronic Pain, Including Interventional Management
Adapted from World Health Organization. World Health Organ Tech Rep Ser. 1990;804:1-73;
Miguel R. Cancer Control. 2000;7:149-156 and Krames E. Med Clin North Am. 1999;83:787-808.
Principles of Analgesic Use
By the mouth: The oral route is the preferred route for analgesics.
By the clock: Chronic pain requires around-the-clock treatment to prevent further pain. In
general, PRN dosing is irrational and inappropriate; it requires patients to experience pain before
being given analgesics for relief.
By the ladder: Refer to the Analgesic Ladder. If a maximum dose of medication does not
adequately relieve pain, move up the ladder, not to a different drug in the same step or efficiency
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group. Severe pain requires immediate use of a strong analgesic such as an opioid, without
progressing sequentially through Steps 1 and 2 of the analgesic ladder.
Individualize dose requirements: The right dose of an analgesic is the dose that relieves pain
with acceptable side effects.
Monitor: Monitor the patient regularly especially after any change in medication or dose, any
additional medications that can leads to adverse drug interactions, and changes in clinical status
including worsening liver and kidney function. This ensures that the benefits of treatment are
maximized while adverse effects are minimized.
Use adjuvant drugs: For example, a bisphosphonate can be used to help control bone pain.
Non-opioid analgesics, eg NSAIDs or acetaminophen, and other adjuvant medications also can be
used at any step to enhance pain relief or counteract the adverse effects of medications.
Goals of Pain Relief: The goals are to first control any ongoing severe pain, then to control pain
at rest and particularly during sleep (to break the cycle of pain- insomnia- fatigue/ exhaustion-
increased pain), and finaly to control pain with movement to improve functional staus.
Non-Opioid Analgesics
Common Non-Opioid Analgesics

Dose < 60 kg Dose > 60 kg
Paracetamol 10-15 mg/kg q 4 hr PO / PR 500-1000 q 6 hr PO / PR
Naproxen 5 mg/kg q 8-12 hr PO 250-500 mg q 8-12 hr PO
Ibuprofen 5-10 mg/kg q 6-8 hr PO 400-600 mg q 6 hr PO
Diclofenac 0.5-1 mg/kg q 8 hr PO 25-50 mg q 8 hr PO
Meloxicam 0.15 mg/kg q day PO/IM 7.5 mg q day PO/IM
Celecoxib 2-4 mg/kg q 12 h PO 100-200 mg q 12 hr PO
Ketorolac 0.5 mg/kg q 6-8 hr PO/IV/IM, 30 mg q 6-8 hr PO/IV/IM,
not for > 5 days not for > 5 days
Paracetamol/ Acetaminophen
Paracetamol/ Acetaminophen is the most widely available analgesic and antipyretic agent. It is
mainly centrally acting and reduces pain perception. Its mechanism of action may involve COX
inhibition in the CNS. It exerts minimal peripheral anti-inflammatory effects. It is effective for mild to
moderate pain, and is also used to provide additive analgesic effect to opioids. Care must be taken
with patients with liver disease or a history of alcohol abuse. Use lowers doses for the elderly,
patients with liver disease, and even critically ill children who are significantly hypovolemic.
Although absorption may be slow and variable, rectal dosing can be used in patients unwilling or
unable to take oral medications. Daily maximum dose depends on several factors including risk,
age, existing disease/s, and clinical staus: premature infants 40 mg/kg; term infants, 75 mg/kg;
children 100 mg/kg; adults 3500-4000 mg; elderly 2500-3000mg. In adults, a ceiling effect may be
encountered in doses above 2.6 g/day.
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Nonsteroidal Antiinflammatory Analgesics
NSAIDs inhibit the cyclooxygenase (COX) enzymes (COX-1 and COX-2) and reduce formation of
inflammatory mediators such as prostaglandins and thromboxanes, resulting their anti-
inflammatory effects. Unlike acetaminophen/paracetamol which acts on COX in the CNS, NSAIDs
inhibit both CNS and peripheral COX.
In palliative care, NSAIDs may be useful for various types of pain including: mild to moderate pain
due to tissue injury and inflammation, bone pain, neuropathic pain, neoplastic fever, headache,
serositis (pleuritis, pericarditis), biliary and ureteric colic. Despite their usefulness, they have
serious adverse side effects that necessitate cautious prescribing.
Some of the major adverse effects of NSAIDs include:

Gastrointestinal: Gastritis, ulcers and erosions, major GI hemorrhage, nausea & vomiting
Cardiovascular: Raised BP, fluid retention
CNS: Headaches, confusion, hallucinations, depression, tremor, tinnitus
Hematological: Anemia, bone marrow depression, platelet aggregation
Hepatic: Hepatotoxicity, hepatitis
Renal: Renal failure, edema
Respiratory: Precipitation of asthma
NSAIDs and COX Inhibition
NSAIDs are essential analgesics especially for pain associated with inflammation. Inflammation
results in increased prostaglandin (PG) production locally and also in the CNS. Increased PGs in
the CNS results in central sensitization and increased pain. NSAIDs inhibit cyclo-oxygenase
(COX), the main enzyme in the synthesis of PGs from arachidonic acid. NSAIDs inhibit PG
production both at the site if injury and in the CNS, ie. they have both a peripheral and central
action. COX exists in 2 forms; COX-1 is present in all tissues and is referred to as ‘constitutive’,
COX-2 is generally detectable in various tissues but is massively induced by inflammation. The
classification of NSAIDs is based on their relative ability to inhibit COX-1 and COX-2. The idea
behind developing COX-2 inhibitors was to have a NSAID devoid of GI toxicity. However, GI
toxicity depends on multiple factors, not just COX-2 selectivity.
Non-Selective COX1-COX2 Inhibitors

Naproxen, Ibuprofen, Diclofenac, Piroxicam, Mefenamic Acid, Indomethacin, Ketorolac
Moderately Selective COX1-COX2 Inhibitors
Meloxicam has some selectivity for COX2 at low doses
Selective COX2 Inhibitors
Celecoxib, Etoricoxib, Valdecoxib, Rofecoxib
Risk of complicated peptic ulcer due to the use of NSAIDs compared with NSAID non-users
History of Risk History of Risk
peptic ulcer disease 9.5 - 17 Presence of alcohol related diagnosis 5
Age >60 years 3 - 13 Concomitant corticosteroids 4 - 10
High dose NSAID 8 Concomitant anticoagulants 12 - 16
Multiple NSAID 9 - 23 Concomitant aspirin 8
Irregular feeding 14
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Prescribing NSAIDs
• Monitor the patient’s response after the NSAID is started and with every dose increase. It may
take > 2 weeks to produce maximum NSAID analgesic effect, but the likelihood of response can
be determined within 1-2 weeks.
• There is a large variability in patients’ responses to different NSAIDs. Try a different NSAID if
the patient does not respond to one.
• Be careful in patients who are at risk bleeding (eg platelet and other bleeding disorders, large
bleeding tumors), history of significant bleed, or who are at risk for developing gastritis andd
gastroduodenal ulcers. Avoid in patients at risk of GI bleed if possible.
• Lower GI toxicity risk: modified salicyates with mild gastric effects (salsalate, diflusinal, or
choline magnesium salicylate), Cox-2 inhibitors, NSAIDs with milder gastric effects (etodolac or
nabumetone; and to a lesser extent ibuprofen and naproxen are relatively safer than agents like
indomethacin (always consider adding GI protective measures to NSAIDs).
Higher GI toxicity risk: Piroxicam, Indomethacin, Ketoralac
• Prescribe a gastro-protective drug prophylactically if the patient is at risk or if the p[atient will be
on long-term NSAID therapy. Eg. proton pump inhibitor, e.g. omeprazole. H2 blockers offer less
protection, but they can be used if cost of a proton pump inhibitor is prohibitive. Antacids and
sucralfate can help reduce symptoms of dyspepsia, but they do not provide any significant
protection from NSAID-induced ulcers.
• GI symptoms (eg nausea, dyspepsia, abdominal pain), are poor indicators of NSAID-induced GI
toxicity- about 2/3 of patients on long term NSAIDs did not experience any significant GI
symptom before an episode of GI bleeding or perforation.
• Avoid in patients with severe renal dysfunction. Be careful in patients with severe liver disease.
• Cox-2 inhibitors have been shown to have an increased risk for cardiovascular events with both
acute and chronic use. Consider the risk-benefit profile before using these medications. Try to
avoid using these agents in patients who are at risk for cardiovascular episodes.
• Long-tern NSAID therapy should be monitored for common adverse effects. Patients on high
dose NSAIDs should also be monitored. Monitoring may involve hemoglobin, kidney function
(bun, crea, urinalysis), liver function, and stool occult blood every 1-4 months depending on the
clinical status and risk profile of the patient. If dose is being titrated, monitor the patient with
every dose increase.
Ketorolac
Ketorolac is a parenteral nonsteroidal anti-inflammatory analgesic that inhibits of prostaglandin
synthesis. It provides analgesia without the risk of respiratory depression and nausea commonly
associated with opioids. Adverse reactions reported in adults include GI bleeding, anaphylaxis,
renal insufficiency, and platelet dysfunction. Pediatric experience is limited due to lack of approval
for use in younger children and some concern over prolongation of bleeding times. Ketorolac can
provide analgesia at doses of 0.5-1.0 mg/kg without adverse GI or renal effects. For post operative
use, it compares well to morphine. It can also reduce opioid requirements in children.
Opioid Analgesics
Opioids are classified as pure agonists, partial agonists, or mixed agonist-antagonists, depending
upon the specific receptors to which they bind and their specific activity at these receptors. Pure
agonists mimic the action of endogenous opioids, and their effectiveness increases with increasing
dose. Pure agonists such as morphine are the most commonly used opioids in the management of
severe chronic pain. Partial agonists have less effect than do pure agonists at opioid receptors.
Examples are pentazocine, butorphanol, dezocine, and nalbuphine. Mixed agonist-antagonists,
130
such as buprenorphine, block one type of opioid receptor while activating a different opioid
receptor. The analgesic effectiveness of both partial agonists and mixed agonist-antagonists is
limited by a dose-related ceiling effect.
Long-acting opioids are recommended for the treatment of severe chronic pain in palliative care.
Short-acting, or immediate-release, opioids are generally recommended when opioid therapy is
being initiated for the first time or as rescue therapy for episodes of breakthrough pain. Once
stable, patients can be switched to a long-acting formulation. Effective control of pain, and
adequate management of side effects, results in improved overall functioning and quality of life.
Opioid Receptors
Mu: (prototype ligand: morphine)
Mu-1: the main action at this receptor is analgesia, but also responsible for miosis,
nausea/vomiting, urinary retention, and pruritus. Endogenous ligands: enkephalins. Mu-2:
respiratory depression, euphoria, sedation, bradycardia, ileus and physical dependence.
Delta: (endogenous enkephalins); modulation of mu receptor, physical dependence.
Kappa: (ketocyclazocine and dynorphin); Analgesia, sedation, dysphoria, and psychomimetic
effects; inhibition of vasopressin release causes diuresis. Pure kappa agonists do not produce
respiratory depression.
Sigma: (N-allylnormetazocine); binds primarily dextrorotatory compounds. Dysphoria, hypertonia,
tachycardia, tachypnea, and mydriasis are the principal effects.
Systemic Effects
Central Nervous System: Dose dependent sedation and analgesia dose-dependent; euphoria;
amnesia with large doses; decrease in cerebral blood flow and metabolic rate; dysphoria and
agitation may occur (worse with meperidine); meperidine can cause seizures- normeperidine, a
major metabolite, is a potent convulsant; ICP may increase if hypoventilation and PaCO2 are not
controlled.
Cardiovascular: Most opioids do not significantly depress cardiac contractility (except for
meperidine which depresses the myocardium); but may enhance depressant effects of other drugs;
Bradycardia, dose-dependent, by stimulation of the vagus nerves increasing vagal tone;
meperidine, may increase heart rate because of its atropine-like structure
Respiratory: Respiratory depression: dose dependent, directly acts on respiratory centers causing
an increased arterial carbon dioxide tension, decreased respiratory rate, increased tidal volume,
decreased minute ventilation and decreased ventilatory response to carbon dioxide. Cough
suppression: dose-dependent decrease in cough reflex.
Pupillary: Pupillary constriction (miosis) is due to the stimulation of the Edinger-Westphal nucleus
of the oculomotor nerve.
Muscular: Large IV doses can cause generalized hypertonus of the skeletal muscles (severe cases
can result in respiratory failure). Benzodiazepine pretreatment may prevent this.
Gastrointestinal: Nausea/vomiting is due to the direct stimulation of the chemoreceptor trigger
zone; Decrease gastric motility; increase tone and secretions of GI tract; Biliary colic is due to the
spasm of sphincter of Oddi (less with meperidine).
Urinary: increases tone of ureter and vesicle sphincter, causing difficulty in urination. Reversed with
anticholinergics such as atropine.
Endocrine: High doses may block hormonal stress response.
Histamine: Histamine release causes itching, redness or hives near the site of injection; may cause
a decrease in vascular resistance, hypotension, and tachycardia. Morphine and meperidine cause
histamine release, but fentanyl, sufentanil, and alfentanil do not.
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Initial Dosing Guide for Opioids
Usual starting IV/SC Parenteral Usual starting oral
doses to oral doses
Drug Child or Adult or dose Child or Adult or
< 50 kg >50 kg ratio < 50 kg >50 kg
0.5-1.0 30-60 mg
Codeine NR NR 1:2
mg/kg q3-4h q3-4h
Bolus: 0.1 Bolus: 5-8 Immediate
Immediate
mg/kg q2-4h mg q2-4h 1:3 release: 15-
Morphine release: 0.3
Infusion: Infusion: long term 20 mg q3-
mg/kg q3-4h
0.03mg/kg/h 1.5 mg/h 4h
Sustained
release: 20-
Sustained
35 kg:10-15
release: 30-
mg q8-12h;
45 mg q8-
35-50 kg:15-
12h
30 mg q8-
12h
0.1-0.2 5-10 mg
Oxycodone NA NA NA
mg/kg q3-4h q3-4h
0.1 mg/kg 5-8 mg q4- 0.1-0.2 5-10 mg
Methadone* 1:2
q4-8h 8h mg/kg q4-8h q4-8h
Bolus:0.5-1.0 Bolus: 25-
ug/kg q1-2h 50ug q1-2h
Fentanyl** NA NA NA
Infusion: 0.5- Infusion:
2.0 ug/kg/h 25-100ug/h
Bolus: 0.02 Bolus: 1
mg q2-4h mg q2-4h 0.04-0.08 2-4 mg q3-
Hydromorphone 1:4
Infusion: Infusion: mg/kg q3-4h 4h
0.006mg/kg/h 0.3 mg/h
Bolus: 0.5-
Bolus: 50- 2-3 mg/kg 100-150 mg
Meperidine*** 1.0 mg/kg 1:4
75 q2-3h q3-4h q3-4h
q2-3h
Doses are for patients > 6 months of age. In infants < 6 months, initial dose should begin at
roughly 25% of doses recommended. Higher doses are often required for patients receiving
mechanical ventilation. All doses are approximate and should be adjusted according to clinical
circumstances. Abbreviations: NA, not applicable; NR, not recommended.
*Methadone requires additional vigilance because it can accumulate and produce delayed sedation. If
sedation occurs, doses should be withheld until sedation resolves. Thereafter, reduce doses, and/or extend
the interval between doses from 3 to 12 hours.
**100ug=0.1 mg
***The use of meperidine should generally be avoided if other opioids are available, especially with long-term
use, because its metabolite can cause seizures.
Adapted from Berde CB, Sethna NF. Analgesics for the treatment of pain in children. N Engl J Med
2002;347:1094-1103.
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Common Opioid Analgesics
Morphine
Morphine is the standard of comparison for opioids. Morphine provides analgesia, sedation, and
diminishes anxiety by its agonist activity at mu and kappa opioid brain receptors. Because of poor
lipid solubility, only small amounts of an administered dose enter the CNS, restricting its usefulness
as a titratable sedative. It provides effective analgesia for 3-4 hours, and has low CNS toxicity.
Morphine has a relatively slow onset (5 minutes IV, 10-15 minutes IM). It works well when
combined with benzodiazepines. Side effects include nausea, hypotension from histamine release,
and respiratory depression. For pediatric patients, children under 2 months of age are more
susceptible to respiratory depression. It causes significant histamine release that can lead to
hypotension and, like all narcotics, depresses the medullary response to hypercapnia and hypoxia.
It has a prolonged half-life and decreased clearance in infants less than one month of age. M6G,
an active metabolite, may accumulate in renal impairment and contribute to toxic effects. M3G, a
metabolite without analgesic activity, may accumulate in renal impairment. M3G has been
implicated in morphine-induced neurotoxicity, hyperalgesia, and allodynia.
Morphine related opioids hydromorphone and oxymorphone are also useful for SC infusions due to
their high SC bioavailability.
Codeine
Codeine and dihydrocodeine are commonly used for mild to moderate pain. Codeine alone is a
weak analgesis, and more effective alternatives are available (including codeine in combination
with APAP or ASA). Codeine is converted to its active metabolite, morphine.
Hydrocodone and Oxycodone

Hydrocodone and oxycodone have a high bioavailability with oral formulation; effective for severe
pain. These are converted to active metabolites: oxycodone to oxymorphone, hydrocodone to
hydromorphone.
Tramadol
Tramadol is useful for mild to moderate pain. It is not a scheduled analgesic. It is a weak opioid
agonist which also inhibits reuptake of norepinephrine and serotonin. Its slower initiation and
titration improves tolerability. Its potency is between codeine and morphine. When converting to
tramadol in patients who have physical opioid dependence and who are receiving substantial
amounts of prior opioids, consider tapering the previous opioid to avoid inducing withdrawal
symptoms. Risk of seizures may be increased in the following patients: those taking MAOIs,
SSRIs, tricyclic antidepressants, neuroleptics, or other drugs that reduce seizure threshold;
patients with epilepsy; patients with risk factors for seizure (such as head trauma, metabolic
disorders, alcohol and drug withdrawal, CNS infections); or patients who take overdoses. Side-
effects: dizziness, nausea, and constipation, headache, somnolence. Monitor the patient for any
problems.
Approximately 50-100 mg tramadol PO = 10 mg morphine sulfate PO; 100 mg IV/IM tramadol = 5-
10 mg IV/IM morphine.
Fentanyl
Fentanyl is a synthetic opioid that is 100 times as potent as morphine and 7000 times more
lipophilic, with rapid CNS uptake within 30-60 seconds after being given IV, and peak analgesic
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effect in 2-3 minutes. Duration of effect is 20-30 minutes. It can be given intermittently to provide
analgesia for short durations; or via continuous infusion or transdermally to provide prolonged
analgesia. Adverse effects are related to rapid administration or large doses (> 8-10 mcg/kg),
which may cause hypotension, or “tight chest syndrome” (rigidity of the chest wall related to
stimulation of the spinal cord inspiratory motor neurons, and inspiratory muscles, leading to
sustained inspiration). It has less cardiovascular side effects, even in high doses. Adverse effects
such as hypotension are reversed by naloxone. Metabolism in children is prolonged, but children
are less likely than adults to suffer respiratory depression. The child will maintain awareness even
though appearing to be asleep. It is primarily an analgesic, but it also has sedative effects at higher
doses.
Consider transdermal fentanyl in patients who cannot take oral long-acting opioids. After removal
of t.d. fentanyl, continued absorption of fentanyl may occur from intradermal depots of drug.
Steady-state is reached after several 72-h. External heat sources (e.g., heating pads, electric
blankets, heat lamps, saunas, hot tubs, or heated water beds) to the application site while the
patch is worn may increase release of fentanyl; monitor for opioid adverse effects.
Alfentanil
Alfentanil is an analog of fentanyl that is one-fifth as potent and has one-third the duration of action.
It reaches the CNS more rapidly than fentanyl, and has a more rapid onset of action. Unlike
fentanyl, alfentanil does not accumulate with repeat dosing due to its smaller volume of distribution
and shorter half-life (elimination half-life 70 minutes as compared with 185 minutes for fentanyl).
Methadone
Methadone is a long-acting agent. Plasma half-life (22 to 128 h short-term; 24 to 48 h at steady-
state) may be longer than the analgesic duration. Delayed analgesia or toxicity may occur because
of drug accumulation after repeated doses (e.g., on days 2 to 5). It has a number of unique
characteristics: excellent oral and rectal absorption, no known active metabolites, long plasma half-
life (24 hours). Methadone may be beneficial in neuropathic pain.
Levorphanol
Like methadone, levorphanol has a plasma half-life that is longer than the duration of analgesia.
Therefore, delayed analgesia or toxicity is possible due to accumulation of levorphanol (e.g., on
about days 2 to 3).
Butorphanol
Comes as an intranasal spray of butorphanol tartrate (10 mg/mL). Butorphanol is an opioid agonist-
antagonist analgesic. While it has the potential of respiratory depression, there is a ceiling on its
effects due to the antagonist component. Peak analgesia is within one hour of nasal administration.
The recommended dose is one spray in one nostril that delivers approximately 1 mg. It has been
used for postprocedure pain control in outpatient settings and for migraine headaches.
Contraindications are sensitivity to butorphanol or the preservative benzethonium chloride and the
usual precautions on the use of narcotics.
Meperidine
Synthetic meperidine has a narrow therapeutic margin (i.e., therapeutic dose close to toxic dose). It
requires 10-20 minutes to peak clinical effect and has a 2-3 hour duration. Accumulation of its
principle active metabolite, normeperidine, can potentially cause CNS stimulation and seizures.
Because of this, it is usually administered in conjunction with phenothiazines to potentiate its
sedative characteristics. It is not recommended routinely for children and even adults.
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In-patient Opioid Therapy Guide
(Adapted from the pain management guidelines developed by Hertzberg Palliative Care Center)
• Assess pain using a pain scale. Pain is subjective: ask the patient. If the patient is unable to
communicate, assess based on behavioral cues. Frequency of pain assessment: initially, every
eight hours and PRN (at least every hour when pain is moderate to severe).
• Short acting strong opioids (morphine, oxycodone) should be used to control moderate and
severe pain. Long acting preparations (e.g. sustained-release preparations of morphine or
oxycodone or transdermal fentanyl) should be started after the pain is controlled on short acting
opioids. Never use long acting opioids to control acute pain.
• Titrate the opioid dose at least every 24 hours when the pain is moderate and at least every 2
hours when the pain is severe. Increase the dose by 25-50% for mild to moderate pain or by 50-
100% for moderate to severe pain. In general, for equivalent dose purposes: rectal = oral route,
SQ = IM = IV route.
• Manage breakthrough pain (acute pain in patients with otherwise controlled pain) with short
acting opioids using approximately 10-15% of the total 24 hour standing opioid dose, q 1-2
hours (e.g. patient on long acting morphine 60 mg po q 12h, breakthrough dose = 15 mg po q 1
hr prn).
• Manage opioid side effects. Constipation must be treated prophylactically.
• Patient Controlled Analgesia (PCA) is a safe and effective modality for delivery of opioids for
pain that is expected to resolve (e.g. post-operative pain) and for acute exacerbations of chronic
pain (e.g. pathologic fracture in a patient with chronic pain from metastatic bone cancer): the
patient self delivers fixed doses of opioid by pressing a button. Overdose is very infrequent
because the patient must be alert in order to press the button. Safe PCA starting doses, for the
average adult are: morphine 1 mg every 10 minutes. A continuous opioid infusion is needed for
patients who suffer from pain not expected to resolve shortly.
• Partial agonists (buprenorphine) and mixed agonist antagonists (pentazocine, nalbuphine,
butorphanol) should not be used because of their high incidence of cognitive effects and
because they cause withdrawal in patients on chronic therapy with opioid agonists.
• Naloxone should be used only for life-threatening opioid induced respiratory depression, an
exceedingly rare occurrence in patients on chronic stable opioid doses. In order to minimize
symptoms of opioid withdrawal (agitation, fever, emesis and pain) when naloxone is needed,
dilute A: 1 vial (0.4 mg) C: 0.01 mg/kg, in 10 cc of NS and administer 1 cc every 1 minute PRN.
This careful titration will reverse respiratory depression without causing withdrawal symptoms.
This is different from the dose given for opioid overdose reversal which is (A: 0.4-1.2 mg C: 0.01
mg/kg IV, may repeat q2-3 minutes). The half-life of naloxone (1 hour) is shorter than the half-
life of opioid agonists, therefore additional doses of naloxone might be needed.
• When converting from one opioid to another divide the dose of the second opioid by 2 to allow
for incomplete cross tolerance between different opioids (may need to titrate up rapidly to an
effective analgesic dose in the first 24 hrs).
No pain: no additional action needed
Mild pain: offer treatment: acetaminophen; or NSAIDs (ibuprofen, naproxen, etc).
Moderate pain: immediate treatment: acetaminophen with oxycodone or codeine or tramadol.
Daily acetaminophen dose should not exceed 4 g/day in the adult, 3 g/day in the elderly, or 2
g/day in those with underlying hepatic dysfuction. Low dose morphine (half of the usual starting
dose for moderate to sever pain) may be used if other agents are not available.
Severe pain: immediate treatment + physician re-evaluation: if the pain persists or increases
despite the above measures the patient should be re-evaluated. Acetaminophen or NSAID
should be continued unless contraindicated.
135
(Note: The cause of the pain must always be properly addressed. Individual patients might
require a different dose or a different treatment approach.)
Patients who are already taking opioids will require higher doses to control new or worsening
pain. When the pain is not expected to resolve shortly, medications should be administered
Around The Clock and additional PRN doses should be available.
Whenever the pain is severe the physician must be notified and a plan of action must be
developed, especially if the pain is expected to recur. If the pain is severe, administration of
parenteral opioids should be strongly considered.
Rapid Opioid Titration for Rapid Relief of Acute Moderate to Severe Pain
(Storey and Knight, UNIPAC Three, 2003)
• Titrating opioids to effectively control pain is important. No ceiling or maximal recommended

opioid dose exists- the effective dose is the correct dose. Large doses of morphine may be
needed to relieve severe pain.
• Immediate-release morphine is a 4-hour drug that reaches its peak effect in approximately 1
hour when given orally, and in 10-20 minutes when given IV/SC/IM. When pain is not relieved
within peak times of the administration of a higher dose, additional doses may be given. The
parenteral route (particularly IV) should be used for rapid titration and pain relief within 1 hour.
• After the pain has been controlled in 1 hour, begin a baseline IV morphine (infusion or bolus):
-- IV infusion: The IV morphine infusion dose per hour (mg/hr) is 10-15% of the total dose
during the 1 hr of rapid titration.
-- IV bolus: The IV morphine bolus dose q 3-4 hrs is 3 or 4 times the hourly dose, which is 10-
15% of the total dose during the 1 hr of rapid titration.
-- Example: The patient received five doses of morphine IV (5 mg) every 10 minutes to rapidly
control his/her severe pain during the first hour. Therefore, 5 x 5 mg = 25 mg of morphine was
used in the first hour. 10-15% of 25 mg = 2.5-3.75 mg per hour of morphine IV given as an
infusion; or 4 x 2.5-3.75 = 10-15 mg given every 4 hours.
• The dose for breakthrough pain is 10-15% of the total 24 hr dose.
--- Example: If the patient is receiving 10 mg morphine IV every 4 hrs for baseline pain; then 10
mg x (24 hrs/ 4 hrs) = 10 mg x 6 = 60 mg morphine IV per day. For breakthrough pain, give
10% -15% of 60 mg = 6-9 mg (rounded off to 5-10 mg) of morphine q 1-2 hrs as needed.
• Continue to titrate the morphine dose until adequate control is achieved. During the titration
process, no ceiling exists on the number of times a dose may be titrated. Over a 24-hour period,
some patients may require > 100% increase over their initial daily baseline dose.
• When titrating opioids, continuing reassessment is needed to identify: pain that does not
respond to opioids, or pain that requires adjuvant drugs or other specific remedies; and
nonphysical pain that requires treatment with emotional and spiritual support, compassionate
listening and the involvement of other members of the interdisciplinary team.
• Once the symptom is stabilized, switch to the oral route (if the patient can swallow), or other
routes if the patient cannot swallow. Note the conversion factors: PO dose q 4 hr= 3 X IV dose
q 4 hr; SC infusion dose = 1-2 X IV infusion dose.
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Example of Titration Increments for Opioid Dosing*
Baseline 4-Hour Dose (mg) Titration Increment (mg)
(1/2 of 4-hour dose or 10% of daily dose)
1—10 1—5
10—20 5—10
20—30 10—15
40—50 20—25
100 30—50
200 50—100
500 100—250
1000 250—500
*The increment doses also are appropriate for use as “rescue doses” for breakthough pain
A Simple Opioid Conversion Method:
1. Determine the total 24-h dose of the current opioid.
2. Using the estimated equianalgesic dose, calculate the equivalent dose of new analgesic for the
desired route of administration.
3. When converting to a different opioid, for most agents, the starting conversion dose of the new
opioid should be 50% to 70% of the equianalgesic dose because of incomplete cross-tolerance.
4. Divide the 24-h starting dose of the new opioid by the frequency of administration to give the
new dose for the new route. Account for kidney and liver failure/insufficiency (see Chapter 9).
5. Modify/ titrate dose depending on response. Consider rescue opioid therapy during the opioid
conversion and dose modification process.
Approximate Equianalgesic Doses

Agonists IV / SC / IM PO
morphine 10 mg q 3-4 hr 30 mg q 3-4 hr
codeine 75 mg q 3-4 hr 150-200 mg q 3-4 hr
fentanyl 0.1 mg q 1 hr n/a
hydromorphone 1.5 mg q 3-4 hr 7.5 mg q 3-4 hr
hydrocodone n/a 30 mg q 3-4 hr
levorphanol 2 mg q 6-8 hr 4 mg q 6-8 hr
meperidine 100 mg q 3 hr 300 mg q 2-3 hr
oxycodone n/a 30 mg q 3-4 hr
oxymorphone 1 mg q 3-4 hr n/a
Agonist-Antagonist and
Partial Agonist
buprenorphine 0.3-0.4 mg q 6-8 hr n/a
butorphanol 2 mg q 3-4 hr n/a
nalbuphine 10 mg q 3-4 hr n/a
pentazocine 60 mg q 3-4 hr 150 mg q 3-4 hr
Example of Simple Conversion of Oral Opioid Doses to Parenteral Doses

Drug PO SC/IV
Morphine 20 mg divide by 3 7 mg Morphine
divide by 20 1 mg Hydromorphone
(Note: For Conversion of Parenteral Doses to Oral Doses, Multiply instead of Divide)
137
Side Effects of Opioids
The more common side effects of opioids include constipation, nausea, sedation, and cognitive
impairment (ie, confusion and delirium). Opioid-related adverse effects may be amenable to
treatment. Switch to another agent when the cause of specific side effects is thought to be due to
the accumulation of active metabolites.
• Constipation: Consider giving laxatives prophylactically to all patients on chronic opioid
therapy. Opioid-induced constipation is usually dose-related. Adequate tolerance to this effect
does not usually develop, and most patients require laxative/stool softener therapy for as long
as they are on chronic opioid therapy.
• Nausea and Vomitting: Nausea and vomiting is a common side effect of opioids. However,
tolerance usually develops, and the symptoms disappear within the first weeks of treatment.
Prophylactic use of an antiemetic is not usually necessary, but an appropriate antiemetic
should be used in limiting nausea and vomiting during the start of opioid therapy. In some
patients, nausea and vomiting may persist or recur in patients on long-term opioid treatment
and may become chronic in nature.
• CNS side effects: Sedation, Confusion, Delirium, and Myoclonus: Sedation and cognitive
impairment (including confusion and delirium) usually occur with the start of therapy or with
dose increases, but tolerance tends to develop, and they usually disappear within the first
week of treatment. In some patients, sedation and cognitive impairment may persist. Certain
individuals may show a paradoxic stimulation with certain opioids, which may become
attenuated with opioid rotation. Myoclonus is mild and infrequent and tolerance develops to
this effect.
Sedation can be treated with an amphetamine, methylphenidate, or modafinil. Also, techniques
exist to potentiate the analgesic efficacy of opioids. Consider adding non-sedating analgesic
and reduce opioid dose. Consider switching to a different opioid. Clonidine and N-methyl-D-
aspartate (NMDA) receptor antagonists such as ketamine, methadone, dextromethorphan, and
magnesium can increase the efficacy of opioids so that lower doses will be needed.
• Respiratory Depression: Tolerance to respiratory depressant effects develops relatively
quickly when compared with its analgesic effect. The risk of a clinically significant respiratory
depression is greatest when opioids are first started; this infrequent side-effect can be easily
managed with dose adjustment or low doses of an opiate antagonist. It is generally accepted
that the patient's death is related to the progression of the disease, not to the use of opioids.
Several small studies have shown that opioid use in dying patients does not increase the
likelihood of a hastened death, and sometimes, appropriate opioid use may even prolong the
life of dying patients.The actual risk of causing death is remote and clearly unintentional were it
to occur as a side effect.
Opioid Withdrawal Syndrome

• May manifest as anxiety, palpitations, tachycardia, and other autonomic symptoms that occur
when the opioid dose is rapidly reduced or discontinued, or when the patient is given an opioid
antagonist.
• Reduction or discontinuation of opioids may be needed when pain has been effectively
controlled by other interventions- such as radiotherapy, chemotherapy, nerve blocks, etc.
• To avoid opioid withdrawal, the opioid dose should be slowly tapered.
For example: 50% of the daily dose for 2-3 days, then decrease the daily dose by 25% every 2-
3 days, until a daily dose of (A: 20-30 mg C: 0.4-0.6 mg/kg) is reached, give this dose for 2-3
days then discontinue.
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Potential Abuse of Opioids
Drug abuse is a societal problem that complicates palliative care management. It should not be
assumed that the incidence of abuse in cancer (or noncancer) patients is lower than that in the
general population. The stigma associated with opioid use usually due to the confusion
surrounding the terms of physical dependence, tolerance, addiction, and pseudoaddiction.
Tolerance refers to the attenuation or loss of analgesic efficacy with continued use of a drug, and
involves changes at the receptor level. But worsening pain in a patient receiving a stable dose of
medications should not be quickly attributed to tolerance; the patient should be first assessed for
disease progression or increasing psychological distress.
Physical dependence reflects a state of neurophysiologic adaptation, and the emergence of
withdrawal symptoms following an abrupt dose reduction or cessation, or administration of an
antagonist. Physical dependence is usually an expected consequence of the long-term use of
opioids. It is usually not known what dose and duration of administration produce clinically
significant physical dependence.
Addiction is a psychological and behavioral syndrome that involves maladaptive behaviors,
including craving, compulsive drug-seeking behaviors, and compulsive drug use. Psychological
dependence is a component of addiction, and refers to ideation about a drug and an intense desire
to obtain it. Continual or increasing use of a drug despite negative physical, psychological, or social
consequences defines addictive behavior. The opioid addict exhibits preoccupation with opioid use
despite adequate pain relief. In general, opioids that are targeted for abuse are short-acting and
potent agents. The "high" that the addict seeks is related to the rate at which the drug is absorbed.
Despite the clinical use of controlled-release formulations, addicts destroy the controlled-release
mechanism, to yield a sufficient amount of drug necessary to achieve the "high."
Pseudoaddiction refers to the apparent drug-seeking behavior in patients who have severe
unrelieved pain and who have not received effective pain therapy. This is not true addiction. This
behavior disappears when adequate analgesic treatment, including increased opioid dosing, is
given. "Pseudoaddicts" may appear to be preoccupied with obtaining opioids, but unlike the addict,
this preoccupation reflects a need for pain control. Unlike true addiction, when pain is effectively
controlled, either with opioids or through other means, the patient uses medications as prescribed.
Management of Breakthrough Pain
The American Pain Society defined breakthrough pain as: "Intermittent exacerbations of pain that
can occur spontaneously or in relation to specific activity; pain that increases above the level of
pain addressed by the ongoing analgesic; includes incident pain and end-of-dose failure."
Breakthrough pain may be visceral, somatic, or neuropathic. Breakthrough pain that is due to
movement is called "incident" pain. The pain is usually rapid in onset and brief in duration.
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Breakthrough pain may be due to inadequate ATC dosing, or it may be idiopathic and unrelated to
movement, activity or dosing schedule. Individualize and titrate rescue medication to have a
balance between adequate pain control and acceptable adverse effects. Breakthrough pain is
usually managed with short-acting immediate-release oral or transmucosal agents, given as
needed. Incident pain may be controlled by giving the drug prior ti anticipated activity. Usually, the
same drug is used for the baseline and breakthrough pain, eg long-acting morphine for baseline
pain and short-acting morphine for breakthrough pain. However, with newer medications, different
opioids have beeen used for baseline vs breakthrough pain. This allows for the use of lower doses
of each drug, and minimizes dose-dependent side effects.
Management of Breakthough/ Episodic Pain

• Manage the baseline pain using standard protocols, such as the WHO ladder approach.
Episodes of pain may be partly due to poor control of baseline pain; and these episodes may
improve with better baseline pain control.
• Be careful not to cause sedation and other analgesic side effects when increasing baseline
analgesic doses to control breakthrough pain. Short duration and infrequent episodes can be
controlled by a quick and short acting analgesic instead. Excessive sedation and side effects
can be managed by adding an adjuvant and decreasing the opioid dose, switching to another
opioid, or using medications to counteract the side-effects (eg stimulants to counteract the
sedation).
• Rescue analgesia can be used at the start of a breakthough pain episode, or to prevent an
anticipated pain episode. The ideal rescue analgesic drug is rapidly absorbed, with rapid onset
and early peak analgesic effect, a short duration of action that is only long enough to treat the
breakthrough pain episode, and safe with minimal side effects.
• Initial rescue dose is usually 10-15% of total 24-hr baseline dose.
• The route of administration also determines the onset and duration of analgesic effect.
Comparison of Different Routes of Morphine Administration for Breakthough Pain

Route Onset of Analgesic Effect Duration of Analgesia Effect
Intravenous Morphine 5 minutes 1-2 hours
Subcutaneous Morphine 10-15 minutes 3-4 hours
Oral (immediate relese) Morphine 30 minutes 4 hours
• Oral transmucosal or intranasal fentanyl (Onset: 5-15 minutes, Duration: 1-2 hours) can also be
used.
• Episodic low dose ketamine (A: 15-30 mg C: 0.2-0.6 mg/kg SC) is an alternative; it is usually
given prior to an anticipated pain episode (eg prior to painful movement or dressing changes).
• Non-pharmacologic interventions include: repositioning, immobilization, orthotic devices,
bracing, massage, heat, relaxation, distraction, and others.
Neuropathic Pain
Neuropathic pain is pain due to disease or traumatic processes affecting the peripheral and central
nervous system. It can be acute or chronic; spontaneous (independent of stimulus) or evoked
(triggered by stimulus). Neuropathic pain can be due to the direct effect of the disease (eg tumor
compression or infiltration), or the effect of procedures or treatments (surgery, radiotherapy,
chemotherapy).
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Common Neuropathic Pain Syndromes
• Trigeminal Neuralgia and Other Cranial Nerve Syndromes: pain +/- sensory loss +/- other
neurological signs affecting the trigeminal nerve or other cranial nerves can be seen in head
and neck cancer- including middle and posterior cranial fossae tumors for trigeminal neuralgia.
• Intercostal Nerve Syndrome: deep aching chest pain later followed by episodes of shooting pain
and continuous burning pain; intercostal nerve is affected by compression or infiltration, causing
segmental distribution.
• Cervical Plexopathy: occurs in head and neck tumors; distribution depends on nerves involved
(eg occipital nerves-occipital area, supraclavicular and transverse cutaneous nerves- anterior
neck and jaw).
• Brachial Plexopathy: very common in lymphoma, breast and lung cancer; symptoms may
involve the shoulder, scapular and subscapular areas, axillary area, arm, and hand.
• Lumbosacral Plexopathy: occurs in pelvic and metastatic malignancies affecting the
lumbosarcal plexus, and causing pain in the buttocks and/or legs; pain can be localized,
radicular, and/or referred.
• Radiculopathy: due to compression or infiltration of nerve roots; pain is along the area of
distribution of the affected nerve root/s; may be due to spinal or paraspinal, or meningeal
tumors and metastases.
• Myelopathy: due to compression or infiltration of spinal cord; may initially present as local pain
due to invasion of spine/ epidural space, then neuropathic pain due to radiculopathy, then finally
affecting the dorsal column and spinothalamic tract; area of distribution depends on level of
spine and spinal cord affected.
• Polyneuropathy: peripheral paraneoplastic polyneuropathy is an infrequent condition that may
be due to the cancer or the body’s immune reaction against it (eg Paraneoplastic Guillain Barre
syndrome- a sub-acute progressive syndrome that can be due to small cell lung cancer or
lymphoma).
• Post-Treatment Neuropathy: can be post-radiotherapy (causing brachial or lumbosacral
plexopathy, etc); post-surgical (eg breast cancer surgery causing intercostal nerve and brachial
plexus pain, phantom breast pain, and other nerve injury pain; thoracic surgery causing
intercoastal nerve and/or brachial plexus pain); post-chemotherapy (eg cisplatin/ vincristine/ or
taxol causing peripheral polyneuropathy).
Simple Guide to Neuropathic Pain Management

• Based on a thorough evaluation, determine the possible cause/s and underlying pain
mechanisms. Findings can suggest more specific drug selections.
• Select the initial drug regimen. Gabapentin or pregabalin are usually used (especially for
peripheral pain). Tricyclic antidepressants or other anticonvulsants (such as lamotigrine,
oxcarbazepine) can also be used (especially for central pain).
Start with a low dose and gradually titate based on response and side-effects. Monitor closely
for any side-effects.
• The initial drug regimen may be combined with other drugs for particular case (eg steroids or
NSAIDs for nerve inflammation or compression; opioids-tramadol, morphine, and others- for
severe pain episodes and mixed type pain episodes). The addition of opioids (given either
continuously or episodically) is particularly helpful for peripheral pain, and less so for central
pain. Severe peripheral nerve injury or ischemia is managed with steroids and/or NSAIDs or
COX-2 inhibitors, but severe pain may eventually require opioids.
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• If the patient does not adequately respond to the initial drug regimen, consider other anti
convulsants or antidepressants (tricyclics, SSRIs, venlafaxine, bupropion, and others).
• Consider combination therapy to address multiple possible mechanisms. Monitor for side
effects.
• For severe refractory neuropathic pain, spinal or neurosurgical procedures may be needed.
Spinal/ Intrathecal drug delivery may involve the use of morphine, ketamine, clonidine,
bupivacaine, and other agents.
Fentanyl
• Fentanyl is a synthetic opioid and is about 30 times more potent than parenteral morphine.
Once the patch is applied to the skin the drug diffuses into the subcutaneous tissues and forms
a reservoir. It is then absorbed into the systemic circulation and takes 17-24 hours to reach
optimal plasma levels. The patch then provides a constant analgesic dose for a further 48
hours. It is worth remembering that the patch has a half-life of about 17 hours after it is
removed. This is due to the formation of the subcutaneous reservoir in the skin. Remember: its
slow to get up to speed and equally slow to stop.
• An approximate method of conversion is to divide the total 24 hour dose of morphine by 3.6, e.g
360mg oral morphine divided by 3.6 equals 100mcg/hr patch. Due to the wide variation in
morphine to fentanyl conversion, it is safer to underestimate the size of patch required.
• In opiod-naive patients, you may consider four hourly morphine first to find the 24 hour
morphine requirement and then convert to the equivalent Fentanyl patch.
• If patients require less than 40mg oral morphine per day then even a 25mcg/hr patch may be
'too strong' and cause side effects.
• Fentanyl patches may be difficult to use with unstable pain. Consider using morphine first until
analgesic requirements are steady and then convert morphine to the equivalent patch.
• When changing from morphine to Fentanyl the patients can experience opioid withdrawal, eg.
abdominal cramps, sweats and flu-like symptoms. This is abated with a dose of short acting
morphine and should only last a few days.
• A small number of patients find the patches last 48 hours and not 72 hours. In these instances it
is appropriate to replace the patch every 48 hours rather than increasing the patch size.
• Due to the heat in summer the patches can slide off. Use micropore tape around the outside of
the patch and not directly over the drug reservoir. Incidentally, direct heat, such as a hot water
bottle can increase absorption.
• When changing from morphine, put a patch on at night with the usual dose of bedtime morphine
then use oral morphine as needed for breakthrough pain.
• It is possible to increase the dose above 100mcg/hr by using more than one patch at a time.
24-hour morphine Fentanyl dose 24-hour morphine Fentanyl dose
(mg/day) (mcg/hr) (mg/day) (mcg/hr)
<135 25 585-674 175
135-224 50 675-764 200
225-314 75 765-854 225
315-404 100 855-944 250
405-494 125 945-1034 275
495-584 150 1035-1124 300
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Adjuvant Drugs for Treating Pain Syndromes in Palliative Care
General Purpose Adjuvant Drugs

• These adjuvant drugs are commonly used for somatic, tissue, and musculoskeletal pain. They
are also helpful for other types of pain such as neuropatic pain, visceral pain, and chronic
headache.
• Tricyclic antidepressants are well studied and commonly used. Their mechanism of action
involves increasing the norepinephrine and/or serotonin levels in the CNS, and the
enhancement of pain modulating pathways. Secondary amines (eg desipramine, nortriptylline)
can be used if there is a concern about the possible adverse effects of tertiary amines (eg
amitriptylline, imipramine, doxepin), or if the patient cannot tolerate tertiary amines due to
adverse effects.
• Selective serotonin reuptake inhibitors (SSRIs) have mixed effects as a group. These include
fluoxetine, citalopram, paroxetine, sertraline, and fluvoxamine. They are used as second or third
line agents; and as first line agents if other indications exist, or if tricyclics are contraindicated.
• Other new antidepressants such as mirtazapine, buproprion, venlafaxine and nefazodone are
less studied, but may also be helpful.
• Corticosteroids (eg dexamethasone, prednisone) can be helpful for various types of pain
including: metastatic bone pain, nerve compression pain, and epidural and spinal cord
compression pain. Due to their potential side effects with prolonged use, they are usually used
for short durations, or continuously for patients with limited life expectancy.
Adjuvant Drugs for Bone Pain

• Bisphosphonates inhibit bone resorption and reduce bone pain in lytic bone lesions.
• Other less commonly used agents include radiopharmaceuticals (Strontium 89), and other
osteoclast inhibitors (eg calcitonin).
Adjuvant Drugs for Neuropathic Pain

• These include various drugs including: anticonvulsants (eg gabapentin, pregabalin,
carbamazepine, valproic acid, clonazepam), antiarrhythmics and local anesthetics (eg lidocaine,
mexiletine), muscle relaxants (eg baclofen), topical agents (eg capsaicin), and NMDA inhibitors
(eg ketamine, dextromethorphan).
• Antidepressant and/or anficonvulsants are commonly used. In difficult cases which require
higher doses, use in combination, and/or check for serum levels of both the antidepressant and
the anticonvulsant to guide titration.
• Anticonvulsants are commonly used as first line agents for neuropathic pain. Gabapentin and
pregabalin can be particularly helpful; these drugs have very minimal side effects compared to
other drugs.
• Systemic use of local anesthetics (eg IV lidocaine, PO mexiletine) occasionally helps.
Mechanism involves the inhibition of sodium channels. IV lidocaine needs to be given while the
patient’s BP and HR are monitored; and relief usually lasts only for a short duration. A positive
response to lidocaine helps determine the likelihood of response to other drugs that also act on
sodium channels such as certain anticonvulsants (eg oxcarbazine, phenytoin), or mexiletine.
• GABA agonists (eg baclofen) are commonly used for neuropathic pain that is only partially
responsive to anticonvulsants (eg in combination with carbamazepine). It is also a muscle
relaxant. It can be used first line for mild to moderate pain, and pain that is also associated with
muscle spasms.
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• NMDA antagonists (eg ketamine, dextromethorphan) can help relieve neuropathic pain.
Ketamine is given as an infusion at doses that are much lower than doses used for anesthesia;
and repeated as needed. Dextromethorphan is an anittussive that is found in many cough
medication formulations.
• Alpha2 adrenergic agonists may be helpful for 25% of patients. Tizanidine has less likely to
produce adverse BP effects compared to clonidine.
Adjuvant Drugs for Visceral Pain

• These include various drugs such as: antispasmodics/ anticholinergics, octreotide, and calcium
channel blockers.
• Octreotide is a synthetic analog of somatostatin is given as a subcutaneous transfusion for
visceral pain; as well as nausea, vomiting, and diarrhea due to malignant bowel obstruction.
Adjuvant Psychostimulant Drugs

• Psychostimulants (eg caffeine, methylphenidate, dextroamphetamine, and pemoline) help
decrease opioid induced sedation, and may enhance the analgesic effect of opioids.
Common Adjuvant Drugs for Pain Control
General Purpose Adjuvant Drugs

NSAIDs
Naproxen A: 250 mg to 500mg, C: 5-7 mg/kg/dose, PO, bid
Ibuprofen A: 200-600 mg, C: 5-10 mg/kg/dose, PO, qid
Selective COX-2 Inhibitors
Meloxicam A: 7.5-15 mg C: 0.2-0.3 mg/kg PO qday
Celecoxib A: 100-200 mg C: 1-2 mg/kg PO qday-bid
Tricyclic antidepressants
Amitriptyline A: 10-25 mg HS, gradually increasing by 10-25 mg every 3-7 days
until a dose of 75-150 mg (max 300 mg/day). C: 0.1-0.5 mg/kg,
gradually increasing by 0.1-0.5 mg/kg every 3-7 days until a dose
of 1-1.5 mg/kg HS (max 2 mg/kg/day)
Sedating, start with low dose, anticholinergic effects.
Doxepin A: 10 mg up to 75 mg HS C: 0.2-0.5 mg/kg HS (start low, then
titrate)
Trazodone A: 25 mg up to 150 mg HS C: 0.5-1 mg/kg PO HS (start low, then
gradually titrate)
Less anticholinergic effect, as potent as amitriptyline, sedating.
Nortriptyline A: 10 mg HS, gradually increasing by 10-25 mg every 3-7 days
until a dose of 75 mg (max 150 mg/day). C: start with 5-10 mg,
gradually increase to the usual maintenance doses based on the
child’s weight: 20-25 kg=10 mg/day, 25-35 kg=10-20 mg/day, 35-
54 kg=25-35 mg/day.
Less anticholinergic effect.
Imipramine A: 10-75 mg/day C: 0.2-0.5 mg/day qHS or divided TID; start low
then gradually increase as needed
Selective serotonin reuptake inhibitors (SSRI’s)
Fluoxetine A: 20-60 mg C: 0.4-0.8 mg/kg PO qday; long half life- less
withdrawal effects when weaning
Sertraline A: 50-200 mg C: 1-1.5 mg/kg PO qday; wean slowly
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Norepinephrine reuptake inhibitors
Venlafaxine A: 25-150 mg C: 0.5-1.5 mg/kg PO qday; mixed reuptake inhibitor
Bupropion A: 75-150 mg C: 5-1.5 mg/kg PO qday-bid; also helpful for
smoking cessation
Steroids
Dexamethasone A: 4 mg qd-tid, C: 0.03-0.1 mg/kg/day div in 3-4 doses,
PO/IV/IM/SC
Adverse effects of long-term administration are well known.
Potential early side effects: loss of glucose control, increased risk
of infection, acute psychiatric disorders (e.g., mania).
Adjuvant Drugs for Bone Pain

Bisphosphonates
For pain due to bone metastases. Do not give SC. Maintain adequate hydration and urine output.
Monitor electrolytes, calcium, BUN, Crea. Common side-effects are hypocalcemia and nausea.
Pamidronate A: 60—90 mg C: 0.5-1 mg/kg/dose, IV, diluted in 500—1000 mL
of NS or D5NS and given IV over 4--24 hours. Repeated q 3-4
weeks.
Clodronate A: 600--1500 mg diluted in 500 ml of NS or D5NS and given IV
over 4—24 hours. Repeated q 3-4 weeks.
Zoledronate A: 4 mg diluted in 100 ml NS or D5NS, and given IV over a
minimum of 15 minutes. Repeated q 3-4 weeks.
Other Drugs
Calcitonin Nasal Spray A: 200 IU C: 4 IU/kg, intranasal qday; A: 25-100 IU C: 0.5-2 IU/kg,
IV bid; synthetic salmon calcitonin. Delayed onset of analgesia;
few side effects.
Strontium 89 A: 4 uCurie/dose, IV; radiopharmaceutical; repeated if responsive
to initial dose; monitor marrow reserve (monitor CBC)
Adjuvant Drugs for Neuropathic Pain

Anticonvulsants
Gabapentin A: 100-300 mg C: 2-5 mg/kg PO bid-tid, increase as tolerated,
max: 40-50 mg/kg/day divided into 3 doses; monitor for CNS or
psychiatric problems especially in children; rapid withdrawal may
cause seizure- wean gradually over 1-2 weeks.
Pregabalin A: 50 mg C: 1 mg/kg PO bid, increase as tolerated
Valproate A: 250 mg PO bid-qid, C: 5-10 mg/kg/day PO divided bid-tid
Both carbamazepine and valproate are absorbed from the rectum.
Contraindicated in liver disease. May cause pancreatitis,
thrombocytopenia, rash, platelet dysfunction. Many drug
interactions. Therapeutic levels: 50-100 mg/L.
Carbamazepine A: 100-200 mg, C: < 6 yo=5-10/mg/kg, 6-12 yo=50-100 mg,
>12 yo=100-200 mg, PO, bid (if using suspension, divide qid).
Start at lower dose if pain is not severe. Chemically related to
tricyclic antidepressants. May cause bone marrow suppression,
agranulocytosis. Many drug interactions.
Clonazepam A: 0.5 mg or 0.01 mg/kg PO bid-tid, C: 0.01 mg/kg/day PO divided
bid-tid, sedating. Contraindicated in severe liver disease and
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acute narrow-angle glaucoma. Do not discontinue abruptly.
Steady state achieved after approx 5 days of the same dose.
Lamotrigine A: 20-25 mg/day C: 0.5-0.6 mg/kg/day PO div qday-BID, titrated
to effect; max dose 200 mg/24hr; Monitor for rash (usually benign
rash, but some can become severe); discontinue if rash occurs.
Avoid using with valproate.
Oxcarbazepine A: 150-300 mg C: 3-5 mg/kg/dose qday-BID PO; start with a low
dose then gradually increase as needed; monitor for
hyponatremia; wean gradually to avoid seizure with rapid wean
Phenytoin A: 300-400 mg PO/IV qd or load with 15—20 mg/kg IV (in a
crisis), C: 5 mg/kg/day PO/IV divided bid-tid
Rarely first line. Contraindicated in cardiac bradyarrhythmia. May
cause gingival hyperplasia, hirsutism, dermatitis, ataxia, lupus-like
syndrome, liver damage. Therapeutic levels: 10-20 mg/L.
Systemically administered local anesthetics
Lidocaine SC or IV infusion Dose: 2-4 mg/kg/dose, slow IV over 30 minutes.
Monitor BP, HR +/- EKG (cardiac monitor) during the infusion.
Mexiletine A: 100-150 mg C: 1-2 mg/kg qday, may gradually increase up to
tid if needed. Monitor EKG, GI side effects, blood levels as
indicated; may worsen bradycardias or other arrhythmias
Locally administered local anesthetics
Lidocaine transdermal 5% Apply to painful areas*
Lidocaine/prilocaine topical Apply to painful areas*
*Avoid applying to large areas and prolonged use to avoid toxicity
Other locally administered agents
Capsaicin 0.025% or 0.075% topical preparation
Commonly causes burning sensation and thermal hyperalgesia
GABA agonists
Baclofen A: 5-20 mg, C: 2.5-5 mg, PO, bid-tid; max: <8 yo=40 mg/day,
>8 yo=60 mg/day; Watch for drowsiness, dizziness. Wean slowly
to avoid hallucinations and/or seizures
Alpha agonists
Clonidine A: 0.1—0.3 mg PO bid. C: 5-7 mcg/kg/day PO divided bid-tid.
Clonidine transdermal (Catapres-TTS) 0.1—0.3 mg/24 hours
Monitor blood pressure, watch for depression, and bradycardia.
May result in rebound hypertension if discontinued.
Tizanidine A: 2-4 mg C: 0.04-0.08 mg/kg PO bid-tid. Start low, then gradually
increase the dose as needed. Also for muscle spasms.
Adjuvant Drugs for Visceral Pain

Anticholinergics
Scopolamine / Hyoscine A: 0.32-0.65 mg/dose SC/IM/IV tid-qid, also 1-2 patches q 3days.
C: 6 mcg/kg/dose, SC/IM/IV tid-qid. Also for > 11 yr old: 1 patch q
3 days.
Transdermal 1.5mg/patch, delivers 0.5 mg over 3 days, apply
patch behind the ear, q72hr
Hyoscyamine A: 0.125-0.25 mg PO/SL, 0.25-0.5 mg IV/IM/SC. C: <2 yr old: 3-4
mcg/kg/dose, >2 yr old: 2.5-3 mcg/kg/dose, PO/SL, tid-qid;
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Oxybutinin A: 5-10 mg/dose, C: < 5yrs=0.2 mg/kg/dose, >5yrs=5mg/dose,
bid-tid, PO; commonly used for urinary bladder spasms
Steroids
Dexamethasone A: 4 mg C: 0.08 mg/kg qday-qid, PO/IV/IM/SC; Can relieve bowel
obstruction. If no benefit in 5 days, discontinue.
Prednisone A: 20 mg C: 0.4 mg/kg bid-qid, PO
Synthetic somatostatin analog
Octreotide Start with A: 50 mcg C: 1 mcg/kg SC bid-tid; gradually increase as
needed. Usual effective dose is A: 0.1-0.2 mg C: 2-4 mcg/kg SC
bid-tid. Rotate sites of injection in a systematic manner. May also
give as a continuous SC infusion. If giving IV, give dose undiluted
over 10-20 minutes.
Adjuvant Psychostimulants
Caffeine A: 100-200 mg C: 2-4 mg/kg PO qday; one glass of caffeinated
drink or one cup of coffee contains approx. 50-80 mg caffeine.
Methylphenidate A: 5-10 mg C: 0.1-0.2 mg/kg PO qam-bid (am and noon)
Dextroamphetamine A: 5-10 mg C: 0.1-0.2 mg/kg PO qam-bid (am and noon)
Naloxone
Naloxone, a semisynthetic opioid antagonist, is used to completely or partially reverse CNS or

respiratory depression induced by opioids. It is often inappropriately used, given as a full ampule
(0.4 mg) for physiologically normal opioid-induced decrease in respiratory rate or mild sedation. It
is normal to have a lower respiratory rate during sleep, especially on opioids. Significant opioid-
induced CNS depression requiring naloxone, involves a change in the level of consciousness.
Depending on the dose, naloxone given to a patient who is physically dependent on opioids will
cause an abrupt return of pain and can cause an Abstinence Syndrome, with symptoms ranging
from mild anxiety, irritability and muscle aches to life-threatening tachycardia and hypertension.
Naloxone can cause cardiovascular collapse and pulmonary edema, through abrupt increase in
sympathetic nervous system activity associated with opioid reversal.
Guidelines for the Use of Naloxone to Reverse Opioid-Induced Adverse Reactions
• Review advance directives and end-of-life goals; naloxone administration is not indicated for
patients on opioids who are dying, as all dying patients will at some point have an altered
mentation and respiratory changes. You may need to write specific orders not to give naloxone.
• Patients should meet all of the following criteria before naloxone is administered:
a) Depressed mental status: difficult to arouse or unarousable (If the patient wakes to voice or
light shake, then naloxone is probably not needed)
b) Shallow respirations or rate < 8 associated with evidence of inadequate ventilation (e.g. low
oxygen saturation, hypotension).
Note: some people breathe at 6-8 per minute when they sleep yet are well ventilated.
• Stop opioid administration.
• Dilute 0.4 mg naloxone (one ampule) with NS to a total volume of 10 ml (1 ml = 0.04 mg).
• Coach the patient to breathe. Even if the patients are sedated, and unable to open their eyes or
respond, theys can usually hear, and reminders to "take a deep breath" are followed.
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• Administer 1 ml IV (0.04mg) q1min until the patient is responsive. A typical response is noted
after 2-4 mls with deeper breathing and greater level of arousal. Gradual naloxone
administration should prevent acute opioid withdrawal.
• If the patient does not respond to a total of 0.8 mg naloxone (2 amps), consider other causes of
sedation and respiratory depression (e.g. benzodiazepines, CVA).
• The duration of action of naloxone is shorter than the duration of action of most short-acting
opioids. A repeat dose of naloxone, or even a continuous naloxone infusion, may be needed.
• Wait until there is sustained improvement in consciousness before restarting opioids at a lower
dose.
Managing Refractory Pain
• Re-evaluate and look for reversible causes (e.g., constipation, urinary retention, infected
wounds, unstable fractures) and treat appropriately.
• Re-evaluate and look for neuropathic pain (burning, shooting, or exquisitely fender to light
touch) and treat appropriately.
— Consider a loading dose of an anticonvulsant; or a trial of local anesthetic, such as IV or SC
lidocaine (1 - 5 mg/kg over 20 - 60 minutes) followed by PO mexiletine.
• Consider rapid dose escalation of a potent opioid and/or a change to IV or SC infusion.
• Consider switching to methadone, which can be very effective for relieving pain in selected
patients with pain uncontrolled by large doses of conventional opioids. Local toxicity when
using the SC route is minimized with site rotation and dexamethasone infused with the
methadone. Methadone is also useful for treating severe pain when high doses of other
opioids result in unacceptable side effects. It can be administered PO, IV, PR, or SC (with
dexamethasone or hyaluronidase). The process of switching to methadone is complex due to
its long half-life. It requires considerable attention, experience, and usually 3—6 days in an
inpatient setting, where patients’ highly variable reactions can be monitored closely. The dose
ratio of methadone to morphine or hydromorphone changes according to the total opioid dose.
• Consider a trial of ketamine, an epidural or intrathecal infusion of an opioid plus bupivacaine or
clonidine, or a neurolytic block.
• Consider more invasive interventions.
Methadone
Methadone is an opioid analgesic with a very long half life. When used appropriately and carefully
by an experienced clinician, it can be a good option for some patients. However, its half life can
become prolonged, variable, and unpredictable, especially in patients with kidney insufficiency.
A Method of Rotating Opioids to Oral or Rectal Methadone (Bruera and Neumann, 1999)
Day 1
• Decrease previous opioid dose by 1/3.
• Replace with 3% of previous daily oral morphine equivalent dose, given as oral or rectal
methadone every 8 hours (e.g., a patient receiving 1000 mg of oral morphine is switched to 660 of
oral morphine + 30 mg/d of oral methadone 10 mg PO or PR q 8 hours)
Day 2
• Decrease previous opioid by another 1/3, if pain is controlled with rescue doses of a short acting
opioid.
• Increase methadone dose only if pain is moderate to severe.
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Day 3
• Discontinue final 1/3 of previous opioid.
• For breakthrough pain, give patient a rescue dose of about 10% of the daily methadone dose,
orally or rectally.
• Continue daily assessment of pain and dose titration until reaching an effective stable dose of
methadone.
Ketamine Use in Severe Pain
The N-methyl-D-aspartate/glutamate receptor (NMDA) is used in opioid-resistant pain, neuropathic

pain, allodynia, hyperalgesia, and refractory/ intractable pain. It can be opioid sparing (reduces
opioid required for pain relief). It inhibits the excitatory effects of glutamate and aspartate; and
interacts with nicotinic, muscarinic, and opioid receptors. At low, sub-anaesthetic doses, it causes
minimal respiratory depression, allows the patient to maintain his/her airway, and maintains
cardiovascular status by acting as a positive inotrope. NMDA receptors are involved in allodynia,
hyperalgesia and prolongation of the pain response. These are more resistant to opioids and
neuropathic agents. In allodynia, a progressive increase in nerve activation makes a light touch feel
painful ('wind up' phenomena). In hyperalgesia, pain due to any painful stimuli is magnified and
prolonged. NMDA receptors are also involved in inflammatory pain, neuropathic pain, phantom
limb pain and peripheral vascular disease pain; and ketamine may also be used as an adjunctive
agent for these types of pain. At higher doses, it is used as a dissociative general anaesthetic. It
activates the limbic system and depresses the cerebral cortex, resulting in analgesia and amnesia.
Side-Effects
For pain, ketamine is usually used in subanaesthetic doses, but there are still the well-known side-
effects seen after using this drug- such as confusion, agitation, delirium, vivid dreams,
hallucinations and feelings of detachment from the body. Low dose haloperidol or a
benzodiazepine (eg midazolam) may be used to relieve these side-effects; however, these may
increase sedation and may cause cardiorespiratory depression. Monitor the patient closely. Side
effects of high dose ketamine used for general anesthesia (1-4 mg/kg IV or 6.5-13 mg/kg IM) are
uncommon at subanaesthetic doses; these include psychotomimetic phenomena (dysphoria,
blunted affect, psychomotor retardation, nightmares, and hallucinations), respiratory depression,
and tachycardia. However, always be prepared for any adverse reactions (eg equiptment for
airway and ventilatory management). Use anticholinergic agents for increased airway secretions
and salivation. Ketamine reverses morphine tolerance, resulting in improved morphine sensitivity.
Reduce the morphine dose by 30-50% at the same time as introducing ketamine to avoid the
problems associated with morphine side-effects. Ketamine is contraindicated in patients with
increased intracranial pressure (ICP) and intraocular pressure (IOP).
Dosage
Start with (A: 5-20 mg C: 0.1-0.4 mg/kg) IV given slowly over 1 minute, followed by an infusion of
(A: 75-150 mg/24hr C: 1.5-3 mg/kg/24hr) via a infusion pump, then slowly titrate as needed by (A:
20-30 mg/24hr C: 0.4-0.6 mg/kg/24 hr) until adequate relief is achieved, or until significant sedation
and uncontrollable side-effects occur. For patients with intractable pain and limited life expectancy,
it is usually used continuously by IV/SC infusion. For very short duration interventions, intermittent
doses (A: 10-25 mg C: 0.2-0.5 mg/kg) IV/SC/IM can be given. The parenteral solution can also be
given by the oral, intranasal, transdermal, and rectal routes. Onset of analgesia is 1 minute when
given IV, 5 minutes for IM, and 15-30 minutes for PO/PR/SC. Duration of action is 15-20 minutes
when given IV; mildly longer for IM/SC/PO/PR/Intranasal. It is stable when mixed with morphine,
low-dose dexamethasone, haloperidol, and metoclopramide. Drugs that affect CYP34A may affect
its metabolism (e.g. azole antifungals, macrolides, HIV protease inhibitors, and other agents).
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Invasive Interventions (Jacox et al, 1994)
In many situations, less invasive interventions should precede invasive palliative measures. In the
small minority of patients for whom psychosocial, physical, and pharmacologic interventions do not
relieve pain, invasive therapies may be useful.
Intraspinal Interventions
• An opioid or a combination of an opioid, and an adjuctive agent is administered into the
epidural space (outside the dura matter) or intrathecal space (subarachnoid space or spinal).
Because drug delivery is near the site of action, doses may be reduced some side effects of
parenteral administration are avoided. The patient remains alert.
• Administration can either be bolus administration or continuous infusion. For continuous
infusions: percutaneous catheters are placed and attached to external pumps; this may remain
effective for a period of days or weeks before skin irritation, catheter dislodgement, or risk of
infection becomes problematic. Bolus administration does not require an infusion device, but
may have an increased risk of side effects from the opioid used. Continuous infusion provides
a steady opioid level, allows addition of a local anesthetic (opioid dose-sparing, synergistic
effect), and has a decreased risk of side effects.
• There can be a trial phase, which, if successful, can lead to a permanently implanted epidural
or intrathecal (spinal) catheter with an implanted pump delivery system when longer survival is
anticipated.
• Contraindications include significant coagulopathy, anticoagulation therapy, active systemic
infection, or patients who lack intact skin over placement sites. Complications include kinked or
dislodged catheters and infections.
Nerve Blocks and Neurolysis

• In palliative care, nerve blocks are performed for several reasons:
diagnostic: to determine the source of pain (e.g., somatic versus sympathetic pathways); to
determine which nerve is primarily involved when the pain seems to cover several areas or
dematomes; to determine if the primary cause (“pain generator”) is central or peripheral
therapeutic: to treat painful conditions that respond to nerve blocks (e.g., celiac block for
pancreatic cancer pain)
prognostic: to predict the outcome of long-lasting interventions (e.g., infusion, neurolysis,
rhizotomy)
preemptive: to prevent painful sequelae of procedures that may cause phantom limb,
causalgia, or reflex sympathetic dystrophy
• A single injection of a nondestructive agent such as lidocaine or bupivacaine, alone or in
combination with an antiinflammatory corticosteroid for a longer-lasting effect, can provide
local relief from nerve or root compression. Placement of an infusion catheter at a sympathetic
ganglion extends the sympathetic blockade from hours to days or weeks.
• Duration of action vary depending on the disease process, size of nerve, and the proximity of
the needle to the nerve when anesthesia was given. Adding epinephrine causes local
vasoconstriction and prolong the duration. Aprroximate durations for peripheral nerve blocks
are: lidocaine (2-4 hrs) and bupivacaine (6-12 hrs).
• Overdoses (CNS dysfunction, followed by cardiovascular problems) usually do not occur due
to the low doses involved. Toxic doses: lidocaine (5 mg/kg) and bupivacaine (2.5 mg/kg).
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• Neurolysis is the use of destructive agents (physical or chemical) to the nerve to produce a
permanent or long-lasting interruption of nerve transmission and pain control. The nerve is first
identified by local anesthesia block/s, then destructive chemical agents (eg ethanol, phenol) or
physical agents (eg cryotherapy probe, radiofrequency probe).
• Neuritis may occur after neurolysis due to nerve regeneration or incomplete nerve destruction.
Incidence of neuritis: ethanol (most common)> phenol> radiofrequency> cryoanalgesia (least
common). Another complication is deafferentation pain after neurolysis (due to either CNS or
local processes); a neuropathic pain that can even be more painful than the original pain.
• A particularly effective technique is the use of celiac plexus blocks done with fluoroscopic or
computed tomography guidance to provide 3-6 (or more) months of marked relief from severe
upper abdominal pain such as that due to pancreatic cancer.
Radiation Therapy
• Local or whole-body radiation enhances the effectiveness of analgesic drug therapy and other
noninvasive therapies by directly affecting the cause of pain (i.e., reducing the primary and
metastatic tumor bulk). A dosage must be chosen that achieves a balance between the
amount of radiation required to kill tumor cells and that which adversely effects normal cells or
prohibits the repair of damaged tissue. Single or reduced fraction treatments often are usually
effective.
• A single intravenous radionuclide injection (e.g. iodine-131, phosphorus-31-orthophosphate,
strontium-89, rhenium-186, or samarium-153) can relieve pain due to widespread bony
metastases. If pain recurs, 50% of patients respond to a second treatment. Single-dose
treatments are better tolerated by frail terminally ill patients.
Surgery
• Excision or debulking of a tumor can reduce pain, relieve symptoms of obstruction or
compression, and improve prognosis. The potential benefits and burdens of surgery should be
carefully considered in light of the patient’s goals of care and expected prognosis. In many
cases, pharmacologic management of the symptoms meet a terminally ill patient’s goals of
care more effectively than surgery.
Neurosurgery
• Like neurolytic blockage, surgical ablation of pain pathways is an option when other modalities
are ineffective or poorly tolerated. Devices can be implanted to deliver drugs or to electrically
stimulate neural structures. Generally, the choice of neurosurgical procedure is based on the
location and type of pain (somatic, visceral, deafferentation), the patient’s general condition
and life expectancy, and available expertise and follow-up.
Chemotherapy
• Chemotherapy may help control pain in chemosensitive malignancies (eg chemosensitive
brain metastases, liver metastases, colon cancer, pancreatic cancer, leukemia, lymphoma).
Hormonal Therapy
• Hormonal therapy may help in hormone sensitive malignancies (eg prostate, breast, uterine).
• Examples include: gonadotropin releasing hormone analogs (eg leuprorelin, goserelin) for
prostate cancer and breast cancer; bilateral orchidectomy, diethylstilbestrol for prostate
cancer; and tamoxifen, progestational agents (megestrol, medroxyprogesterone) for breast
cancer.
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• A transient pain exacerbation may occur during the first 2 weeks of hormone therapy (tumor
flare). This should be controlled with appropriate analgesics.
Alternative Routes for Opioid and other Drug Therapies
Opioid Administration Guide for Patients Who are Unable to Take Oral Opioids
• Subcutaneous Route is easy to use and should be considered for parenteral intermittent or
continuous morphine. The relative potency ratio of PO:SC is between 1:2 and 1:3 ( 2 to 3 mg
PO is equianalgesic to 1 mg SC Morphine).
• Intravenous Route should be considered for parenteral intermittent or continuous morphine
particularly if: IV access is already available / there is generalized edema / conplications due to
SC route occurs, such as redness, soreness, or sterile abcess / there is a bleeding, or
coagulation disorder/s / there is poor peripheral circulation. The relative potency ratio of PO:IV
is between 1:2 and 1:3 ( 2 to 3 mg PO is equianalgesic to 1 mg IV Morphine).
• Intramuscular Route should be avoided especially since SC route is easier and less painful.
• Rectal Route should also be considered, especially if the patient and/or family prefer this route.
The relative potency ratio of PO:PR is 1:1 ( 1 mg PO is equianalgesic to 1 mg PR Morphine).
• Buccal and Sublingual Routes may be considered on a case-to-case basis. Permeability is
less at the buccal area (between the gingival edge of the upper molarsand the cheek)
compared to the sublingual area (under the tounge).Drug absoption varies and depends on
several factors (e.g. drug’s lipophilia, size of molecule, concentration, pH of solution, etc), and
there is currently no widely accepted consensus about their efficacy and use. Lipophilic drugs
methadone, buprenorphine, fentanyl, and sulfentanyl have been used. Studies on morphine
absoption showed varying results. Oral transmucosal fentanyl citrate has been used for
breakthrough pain.
• Nebulized Route may be considered. Studies have shown varied results in terms of pain relief,
but it is a reasonable alternative to consider on a case-to-case basis.
• Intranasal Route allows rapid absorption and pain relief due to large surface area for
absorption, permeable endothelium, and avoidance of first-pass metabolism. Regular
morphine gluconate preparations have a bioavailability of 10 percent compared with IV route;
but new preparations can have values as high as 60 percent. Other drugs used are fentanyl,
sulfentanyl, oxycodone, hydromorphone, methadone, buprenorphine, ketamine, and
midazolam.
• Transdermal Route depends on several factors (e.g. lopophilicity, small molecules, thickness
of skin’s stratum corneum, etc). Transdermal fentanyl is commonly used. Another drug is
buprenorphine.
• Spinal Route (epidural or intrathecal) using opioids and local anesthetics may be considered if
systemic opioids and adjuvants cannot relieve the pain, or if intolerable side-effects prevent
their use.
Subcutaneous Administration
For patients with diificult or poor intravenous access who need parenteral analgesics and other
medications, subcutaneous access is an option.
• Starting a Subcutaneous Infusion: Determine the 24-hr drug requirement; load the drug in the
infusion bag or syringe. Place a small catheter, or butterfly needle, about 25 or 27-gauge,
subcutaneously at an angle of 40-45 degrees in one of the following sites: chest (upper chest,
above breast, at intercostal space), abdomen, outer aspect of the upper arm, or thigh. Secure
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the needle well, and connect to the infusion bag or infusion device. If using an infusion device
(eg infusion pump, syringe driver), follow the product instructions.
• Care of the Subcutaneous Infusion Site: Monitor the site regularly. Monitor the rate closely- if
the rate is too slow, then check the needle placement, tubing, device/ battery/ power supply,
and check the site for inflammation; if the rate is too fast, then adjust the rate settings. Change
the site every 3-5 days or earlier if there is evidence of local inflammation. More irritating drugs
(eg dexamethasone) may require earlier changes; while less irritating drugs (eg morphine) can
sometimes last 10-14 days without local inflammation.
• Hypodermoclysis: Subcutaneous infusion of fluid +/- medications (up to 1.5 liters/day can
usually be infused). The infusion fluid can be: saline, or a dextrose-saline mixture (1-2 parts
dextrose water to 1 part normal saline). Dextrose alone may cause pain and swelling.
Hyaluronidase (500-750 U per liter of infusion fluid) can also be added to facilitate diffusion and
absorption.
• A medication or a mixture of several medications can be given either intermittently, or
continuously. Small syringe drivers or infusion pumps, with or without a patient-controlled
analgesia (PCA) device, are used for continuous infusions. Use concentrated solutions so that
volume and infusion rates do not exceed 1-3 ml/hour. Higher rates and larger volumes for
continuous and intermittent infusions have been used in some centers under close supervision
and monitoring.
• Useful Medications That Can Be Given Subcutaneously
Clonazepam Hyoscine butylbromide Octreotide
Dexamethasone Hyoscine hydrobromide Ondansetron
Diclofenac Ketamine Oxycodone
Dimenhydrinate Ketorolac Phenobarbital
Fentanyl Levomepromazine Promethazine
Glycopyrronium Methadone Ranitidine
Haloperidol Metoclopramide Sufentanil
Hydromorphone Midazolam Tramadol
Hydroxyzine Morphine
• Common Starting 24 Hour Dose Requirements
Actual dose requirements can vary depending on the severity of symptoms, and the patient’s
clinical status. Titrate the dose based on symptom relief and side-effects.
--- Morphine: Start with 1/3 of the patient’s total oral morphine requirement; or 100% of the
patient’s 24 hr IV requirement; titrate based on symptom relief and side-effects.
--- Haloperidol: A: 1.5 mg C: 0.03 mg/kg, per 24 hr
--- Metoclopramide: A: 30-60 mg C: 0.6-1 mg/kg, per 24 hr
--- Midazolam: A: 5-20 mg C: 0.1-0.4 mg/kg, per 24 hr
--- Octreotide: A: 200-300 mcg C: 4-6 mcg/kg, per 24 hr
--- Atropine: A: 2-3 mg, C: 0.04-0.06 mg/kg, per 24 hr
--- Promethazine: A: 12.5-25 mg C: 0.2-0.5 mg/kg, per 24 hr
--- Hydroxyzine: A: 12.5-25 mg C: 0.2-0.5 mg/kg, per 24 hr
• Compatibility
Many factors determine the stability of medication combinations or mixtures. These include:
concentration, temperature, sun exposure, and pH. In general, the pHs of each of the
medications in the mixture are important determinants of compatibility and stability. Most of the
medications which are listed above are acidic (low pH), except for the following which are basic
or alkaline (high pH): Dexamethasone, Diclofenac, Ketorolac, and Phenobarbital. These
medications usually need to be infused separately.
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Refer to compatibility charts and other drug references for a more extensive list of medications,
and compatibilities.
• Topical analgesics can be used to make the needle insertion less painful. If there is pain at the
site, consider mixing one part 1% lidocaine (10 mg/ml) with nine parts opioid/medication
solution. Lidocaine infusion should not exceed 1.5 mg/kg/hour.
Analgesia and Sedation
Drug Selection
Sedatives relieve anxiety, and analgesics control pain, resulting in patient comfort patient comfort.
Select an agent that will achieve the desired end point while minimizing the potential adverse
effects. Be familiar with the medications, select the mode of administration, control the setting and
environment, institute adequate monitoring, and know resource limitations. The ideal medication
that is 100% effective, universally safe, with appropriate duration of action, no adverse side effects,
and rapid onset and recovery does not exist. Assess the risk and vital organ reserve (i.e.,
cardiovascular, respiratory, and neurological systems).
Mode of Administration
After selecting the drug/s, decide on the most appropriate method of administration. Light
(conscious) sedation alleviates anxiety and decreases awareness. Patients remain responsive to
verbal and physical stimuli and maintain their airway, swallowing reflexes, and vital signs
independently. The newer ultrashort agents are helpful in producing deep sedation rapidly and
allowing rapid recovery. Use of these agents allows titration to desired effect in an incremental
fashion (i.e., administer drug and observe central nervous system effect and repeating to
quiescence or immobilization). Deep sedation requires continued physician supervision.
Setting and Environment

Limit procedural sedation to areas that can accommodate skilled personnel and all the appropriate
monitoring and resuscitation equipment. Have all necessary medications, reversal agents, airway
equipment, and suction immediately available and within reach for rapid intervention when needed.
A sedative can alter the response to painful stimuli but it should always be coupled with an
analgesic to manage pain. Some analgesics can cause sedation as a side effect but they are not
the first choice for pure sedation or amnesia. Light (transmucosal route) sedation is a uniquely
pediatric phenomenon. It has an efficacy ceiling due to variability in transmucosal absorption, rapid
clearance from first pass hepatic metabolism, and unpredictable duration and response from low
drug effect. Repeat dosing can increase effectiveness at the cost of delaying the entire procedure.
Light (conscious) sedation is minimally invasive, easy to administer, and unlikely to cause
cardiorespiratory compromise. It is frequently used for minor procedures. Intramuscular (IM)
administration of sedative or analgesic agents carries the risk of oversedation without benefit of
vascular access should complications develop. The gold standard for effective and reliable
pediatric sedation to a predictable end point is intravenous (IV) administration. It provides access
for administration of reversal agents and any necessary resuscitation drugs. Deep sedation is
facilitated by the IV use of potent, highly lipophilic, and ultrashort-acting agents such as fentanyl or
thiopental. Clinicians can administer a small dose, observe the CNS effect within seconds to
minutes, and repeat the process until a desired clinical end point is reached. This “individualizes”
the process by allowing a combination of medications to be used such as a sedative and an
analgesic.
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Anticipate Complications
As with all procedures, physicians administering sedation and analgesia to enough patients will
eventually experience a complication. Correct use of therapeutic sedating agents, proper
counseling of the family and patient, proper documentation, and close monitoring are important.
Avoid stacking. Stacking occurs after a second or third drug dose is given before the peak clinical
effect of the initial administered drug dose. As the first dose is peaking, the subsequent doses that
are already given, “stack” up on the initial dose, and exaggerate the clinical effect. Stacking can be
avoided by knowing the pharmacokinetic properties of the drug. Smaller, well timed doses are
better than large doses that might overshoot the target effect. Impatience and an “itchy trigger
finger” can lead to over-sedation and respiratory depression.
Beware of the lost stimulus. With sudden removal of pain and antagonist stimulation, the patient
tends to slide deeper into unopposed sedation and can require stimulation to breathe.
Minimize crossover titration: Crossover titration occurs when alternating doses of two different
classes of medications are used in a sequential fashion (e.g., midazolam then fentanyl, then
midazolam then fentanyl, etc.) The cumulative effect is unpredictable and much greater than
establishing baseline sedation and titrating to an end point with a single analgesic agent. Repeat
doses of drugs with differing times to peak effect make it difficult to estimate subsequent doses.
Time to recovery is also prolonged with crossover.
Recognize the shifting baseline. Patients who have already received analgesic drugs before
sedation will have an altered baseline. Use of the standard dose results in an exaggerated effect
due to interaction with the drugs already receieved. The same applies to adolescents under the
influence of alcohol or drugs of abuse.
Anticipate cumulation. Repeated administration of some drugs beyond its normal duration of
action leads to accumulation of the drug in the body. Most of the ultrashort medications have
predictable termination of their clinical effect via redistribution from lipid-rich brain tissue down a
concentration gradient into skeletal and other body fat depots. As the level of active drug present in
the brain decreases, the patient demonstrates recovery; however, the great majority of the
medication is still present in the body. If body tissue depots are saturated, then redistribution is
slow and sedation is prolonged. Recovery will depend on hepatic metabolism or renal excretion of
the drug involved and not on redistribution. Alfentanil is a notable exception, as it does not
cumulate in the body but is rapidly metabolized to terminate its effect.
Recovery and Emergence from Sedation

Ideal emergence from sedation is characterized by a rapid return to pre-sedation levels of
consciousness with minimal distress. Avoid reversal of sedative or analgesic agents with opiate or
benzodiazepine antagonists to speed recovery. Sudden reversal of sedation or analgesia carries
with it the return of pain, anxiety, and sympathetic stimulation.
Conscious Sedation
Conscious sedation is a medically controlled state of decreased consciousness that maintains

protective reflexes, maintains the patient’s ability to maintain a patent airway, and permits patient
response to physical stimulus or verbal stimulus. Drugs and doses should have an adequate safety
margin that makes loss of consciousness unlikely. Possible complications include: respiratory
depression, nausea, vomiting, seizure, aspiration, and hypotension. Always have equiptment ready
for airway management and resuscitation. Monitor vital signs closely. Keep NPO for 8 hrs prior to
the procedure to prevent aspiration.
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Drugs Commonly Used for Conscious Sedation
Drug Dose Onset (min) Duration (hr)
Midazolam 0.05 mg/kg/dose 1-3 (IV) 0.5-2
(S) Max single dose: 0.2
mg/kg IV/IM/PR
Diazepam 0.1-0.2 mg/kg/dose 1-5 1-3
(S) IV/PO/PR
Lorazepam 0.05 mg/kg/dose; Max 1-5 (IV) 1-3
(S) single dose: 2 mg
IV/IM/PO/PR
Pentobarbital (H) 0.5-1 mg/kg/dose IV 1-10 0.5-2
Morphine 0.1 mg/kg/dose; Max 1-2 (IV); 10-25 (IM) 0.25-2 (IV); 2-4 (IM)
(A) dose: 15 mg
IV/IM
Fentanyl 1-2 mcg/kg/dose; Max 1-2 (IV/IM) 0.5-1
(A) dose: 5 mcg/kg
IV/IM
Ketamine 0.5-1 mg/kg/dose (IV) 0.5 (IV); 12-25 (IM) 0.5-1
(SAH) 2-4 mg/kg/dose (IM)
Max dose: 13 mg/kg
Chloral Hydrate 25-100 mg/kg; 30-60 3-4
(H) Max: 2g; PO/PR
S (Sedative), A (Analgesic), H (Hypnotic)
Sedatives and Hypnotics
Short Duration Agents

Midazolam
Midazolam is a rapid-acting benzodiazepine that has become the most popular agent for sedation.
It is 3-4 times more potent than diazepam, with a rapid onset and peak effect within 2-3 minutes
after IV administration. It is water soluble and non-irritating to veins. Its duration of action is short. It
binds CNS GABA receptors to inhibit spinal afferent pathways and produces skeletal muscle
relaxation, amnesia, and anxiolysis. At higher doses, it can produce hypotension, particularly in
hypovolemic patients. At lower doses, airway reflexes are maintained while it produces anxiolysis
and sedation. It also has the added benefit of producing anterograde and retrograde amnesia. It
alters pain response but does not reduce pain perception. Therefore an analgesic drug should be
added if pain exists. When used intravenously or in conjunction with an opioid, it is a potent
sedative-amnestic, but requires close monitoring of cardiorespiratory function. Avoid giving IV
doses as a bolus, administer over 2-3 minutes and allow an additional 2-4 minutes to evaluate its
sedative effect. The effects of midazolam can be reversed with intravenous flumazenil but routine
reversal is not recommended. The effectiveness of midazolam in pediatric patients has been well
documented. For pediatric patients, the initial IV dosing for children 6 months to five years is 0.05-
0.1 mg/kg, then titrated to a maximum of 0.4 to 0.6 mg/kg. For children 6-12 years, the initial IV
dose is 0.025-0.05 mg/kg, then titrated to a maximum of 0.2 to 0.4 mg/kg.
Thiopental
Thiopental is an ultrashort-acting, potent barbiturate hypnotic that reaches the brain within 30
seconds of IV administration. If given at sub anesthetic dose, it produces hypnosis and sedation
that lasts 10-15 minutes. It causes histamine release, and must be used with care in asthmatics. It
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can also cause hypotension. It has a dose dependent depression of cerebral metabolism, cerebral
blood flow, and intracranial pressure. It is alkaline and extravasation into subcutaneous tissues can
cause erythema, edema, and tissue necrosis. Sedative dosing is at 1 mg/kg every 1-2 minutes,
titrating for effect to a usual total dose of 3-5 mg/kg. It provides no analgesia and should be
combined with an analgesic for pain. It can be also be given rectally.
Propofol
A unique ultrashort alkylphenol agent which has a faster onset than thiopental and twice the
potency. It also has antiemetic, antipruritic, anticonvulsant, anixiolytic effects. Emergence and
return to baseline is rapid. A continuous infusion or repeat bolus injection to maintain effect beyond
5-10 minutes. It is given as intermittent boluses or as a continuous infusion at an initial rate of 25-
100 mcg/kg/min titrated to effect. Pain on infusion is decreased by using 0.5 mg/kg lidocaine with
propofol, larger veins, or a concomitant analgesic. It has no amnestic or analgesic effects and,
should be combined with other agents for amnesia and analgesia. Hypotension, myocardial
depression, and apnea are directly related to dose and rate of injection; and slow gradual infusion
of doses minimizes adverse effects. These adverse effects may be more common than with other
agents but are also more transient and self limited.
Intermediate Duration Agents

Diazepam
When solubilized in propylene glycol, diazepam is very irritating to veins on injection and while
predictable, has a slower onset to action than midazolam.
Lorazepam
Lorazepam is another benzodiazepine that may be used instead of diazepam. The side effect
profiles are similar to those described for midazolam.
Long-Duration Agents
Pentobarbital
Pentobarbital is a long-acting barbiturate that induces sedation within five minutes of IV injection. It
has a duration of action of 30-60 minutes and requires monitoring for potential hypoxia.
Pentobarbital does not provide analgesia. Dosing is at 2-5 mg/kg.
Chloral Hydrate
Chloral hydrate is a popular hypnotic/sedative. It is active secondary to its hepatic metabolite
trichloroethanol and is contraindicated in liver failure. Dosages vary from 25-50 mg/kg PO/PR. The
dose is often repeated if the intended end point is not reached. It has delayed onset of up to 1
hour, often resulting in prolonged sedation, and a peak drug effect that occurs minutes to hours
after the completion of the procedure.This necessitates extended recovery and observation time.
Nausea, vomiting, respiratory depression, and death have been reported.
Other Agents
Ketamine
Ketamine is particularly useful in procedural and short-term sedation. Ketamine is among the
safest alternatives for sedation, especially in young children. It produces a dissociative sedation
characterized by a trance-like sedation, amnesia, analgesia, and catalepsy. The child seems
awake with eyes open with a slow nystagmus, intact corneal/ light reflexes, but unresponsive to
pain and visual stimuli (“lights are on but nobody’s home”). Ketamine provide adequate sedation
while allowing the patient to independently maintain his/her airway. At low doses it maintains
cardiovascular function as a positive inotrope (increases blood pressure, heart rate, cardiac
output); but it also increases intracranial pressure (ICP), and shifts the CO2 response curve to the
right. It causes bronchodilation and maintains airway reflexes; but it also increases airway
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secretions, salivation, and cause laryngospasm. At high doses, it is a general anesthetic that
causes cardiopulmonary depression. It has a predictable onset (1-2 mins IV, 5 mins IM) and
duration (approx 20-40 mins).
Dose and Administration. Ketamine can be given IM (1-2 mg/kg); or IV (0.5-1 mg/kg given over at
least 2 minutes to avoid respiratory depression). Additional doses of IM (1 mg/kg) or IV (0.5 mg/kg)
can be given until dissociative sedation is achieved; and to prolong sedation for longer procedures.
It can be given PO/PR/intranasal/transdermal; but it is more predictable and effective when given
IM/IV. For increased airway secretions and salivation, anticholinergics such as atropine (0.01
mg/kg, maximum 0.5 mg) or glycopyrollate (0.005 mg/kg, maximum 0.25 mg) may be used prior to
or combined with ketamine. Larygospasm occurs in 5-9% of children with upper respiratory
infections. Infants < 3 months old have a higher risk of respiratory complications (eg apnea,
aspiration).
Emergence Return from the dissociative process can create an agitated, disoriented, and
combative, known as “emergence reaction.” Risk factors include: age over 10-15 yrs, female, a
history of vivid dreams, personality/ psychiatric problems. It is uncommon in younger children
(approx 2%). Preventive measures include: low-dose midazolam (0.05-0.1 mg/kg) and a quiet/
relaxed environment. However, midazolam may prolong sedation. Vomitting can occur. Patients
with suspected head injury, upper respiratory infections, psychiatric problem, thyroid or liver
diseases, and age < 3 months or > 10 years may not be good candidates for ketamine use.
Educate the parents of pediatric patients about the transient nystagmus, ataxia, and behavioral
effects of ketamine to prevent anxiety. Serious complication rate (apnea, laryngospasm,
emergence reaction, aspiration, death) is less than 0.2%.
Nitrous Oxide
Nitrous oxide is an inhaled sedative analgesic. It is short-acting, rapid in onset, and is easily
administered by demand valve face mask in a 50:50 mixture with oxygen to prevent hypoxia. It is
most effective in children > 8 years of age. It is particularly useful in patients who are poorly
cooperative (developmental delay, mental retardation). It is non-invasive, requires minimum
expertise and monitoring, and produces light sedation. It is highly diffusable and can accumulate in
enclosed body cavities such as the middle ear or bowel and may cause perforation; but it is very
safe for short use. When used with opioids or sedatives, it produces deep sedation, and
appropriate monitoring is desirable.
Pain Due to Bony Metastasis
The most common cancers associated with bony metastases are breast, prostate and lung. The
bones most commonly involved are those of the spine, pelvis, ribs and femur.
Bony metastases produce: Pain (>70%), Poor mobility, Fractures (< 10%), Nerve root
compression, Spinal cord compression (medical emergency), and Bone marrow failure due to
massive infiltration (rare in solid tumours). Malignant hypercalcaemia may be related to bony
metastases, or to the production of parathyroid hormone related protein, which promotes calcium
release from bone and inhibits calcium excretion.
Clinical features
Bone pain produces a dull ache, often well localised, increases with weight bearing, aggravated
with moving, standing and walking. There is often local tenderness. There may be other features
depending on the nature of the metastases, e.g. neuropathic pain, spinal cord compression or
muscle spasm. Incident pain is severe pain with movement.
Pathophysiology of bone metastases
Osteoclastic activation is the key process in the pathophysiology of bone disease. This produces
osteolysis and bone resorption. Osteoblastic activity (bone formation) occurs concurrently but is
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disorganised. Osteolysis predominates in myeloma and the majority of breast cancers and so
produces lytic metastases on x-ray. Osteosclerosis is more frequent in prostate cancer and
produces sclerotic metastases on x-ray. Both lytic and sclerotic metastases can be seen in the
same patient. The pathophysiology of bone pain is not fully understood. It can be related to size of
tumour, hence stretch on the periosteum and also may be related to inflammatory processes.
Investigations
• X-rays are very useful. They are abnormal if more than half of the cancellous bone is destroyed.
• Bone scanning is more sensitive but less specific. It can detect small metastases (2mm) but
may be negative in purely lytic lesions, e.g. multiple myeloma. It will show abnormality wherever
there is osteoblastic activity, e.g. arthritis, infection, trauma and Paget’s disease.
• CT and MRI are the investigations of choice in suspected spinal cord compression or if there is
suspicion of soft tissue involvement.
Treatment
• Radiotherapy
The gold standard for treatment of bone pain secondary to metastases. It will produce clinical
improvement in about 80% of patients whether a radiosensitive tumor or not (e.g. melanoma).
Improvement usually occurs within two weeks and can last several months.
• Analgesic Drugs: Paracetamol, NSAIDs, Opioids
• Steroids, e.g. Dexamethasone
Especially useful if suspicion of nerve root entrapment and neuropathic pain. Cautious use if
concomitant administration of NSAIDs due to GI toxicity.
• Bisphosphonates, e.g. Pamidronate, Clodronate, Zoledronic Acid
The bisphosphonates inhibit osteoclast activity and are therefore useful in bone pain secondary
to lytic lesions e.g. myeloma and breast cancer. They are also used for malignant
hypercalcaemia.
-- Pamidronate: Pamidronate IV (30-120 mg) is diluted in 1000 ml NS or D5NS and given over
a minimum of 2 hours (usually given over 4-24 hrs). Initial dose of 60 mg IV. If there is
inadequate pain relief at 60 mg, then increase the dose to 90 mg. If the patient responds, then
repeat q3-4 weeks for as long as there is response. When the response becomes less than
adequate, increase the dose by 30 mg (max 120 mg). If there is still no response, then
discontinue.
-- Clodronate: Clodronate IV (600-1500 mg) is diluted in 500 ml NS or D5NS and given over a
minimum of 4 hours (usually 4-8 hours). Begin with a dose of 600 mg IV. If there is inadequate
pain relief, then increase the dose to 900 mg. If the patient responds, then repeat q3-4 weeks
for as long as there is response. When the response becomes less than adequate, increase the
dose by 300 mg (max 1500 mg). If there is still no further response, then discontinue. Oral
clodronate can also be used at 800-1600 mg qday.
-- Zoledronate: Zolendronate IV (4 mg) is diluted in 100 ml NS or D5NS, and given over a
minimum of 15 minutes. If the patient responds, then repeat q3-4 weeks for as long as there is
response.
• Local infiltration with steroid and local anesthetic. Nerve blocks, eg. rib pain.
• Surgical management of unstable bone, including fractures.
• Epidural / intrathecal infusions.
In some terminally ill patients, conventional pharmacotherapy and even invasive procedural
therapy may not provide adequate relief of pain. In the very terminal phase, more invasive
procedural options should be used relatively sparingly. Options for severe pain in this phase
include subcutaneous infusions of opioids and/or sedatives. One needs to use caution not to
mistake delirium for an increase in pain, and massive dose escalation should rarely be needed.
Haloperidol and corticosteroids can be helpful symptom control adjuncts in the terminal phase.
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5 Non-Pain Symptoms and Problems
Aside from pain, other symptoms often contribute to the suffering of palliative care patients. In
patients who have cancer, fatigue, anorexia and pain significantly cause emotional and physical
distress. Nausea, constipation, altered mental state (e.g., delirium) and dyspnea are the next most
common symptoms.
In managing nonpain symptoms in palliative care, the palliative medicine physician should search
for the causes of the symptoms by obtaining the proper history, doing an adequate physical
examination and diagnostic tests (to the extent that is appropriate in terminally ill and palliative care
patients). The goal is to alleviate the symptoms, as well as preventing or treating the underlying
causes if it is possible or reasonable to do so. The palliative care physician should be thoroughly
familiar with the drugs and treatments prescribed.
Frequently re-evaluate the patient. Treatment approaches change as the patient’s illness worsens
and as the patient approaches the end of life.
The continued commitment of palliative care providers to ameliorate symptoms and preserve
comfort and dignity are important when it is impossible to cure or even slow the progression of an
underlying disease process.
Symptom Prevalence in Palliative Care Patients

Prevalence%
Symptom Edmonton Palliative St. Christopher’s Memorial Sloan
Care Service, Hospice, Kettering, USA
Canada UK
Asthenia 90 91 74
Anorexia 85 76 44
Pain 76 62 64
Nausea 68 44 44
Constipation 65 51 35
Sedation/ 60 N/A 60
confusion
Dyspnea 12 51 24

The patient, family, or caregiver can be asked to keep a journal, diary, or flow sheet to monitor pain
and other symptoms. The time, duration, character, and context in which the symptom occurred
(eg during an activity, movement, stress, other preceeding or possible precipitating factors), pain
intensity (may use simple pain scales), intervention/s used (including medications), and response
to the intervention/s can be recorded. The palliative care team can also use symptom flow sheets
to help in the assessment and management of ongoing problems and symptoms. A simple uniform
scale may be used to monitor the intensity and degree of distress due to each symptom.
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Anorexia and Cachexia
Anorexia is the loss of appetite resulting in a reduction of food/ caloric intake. It can lead to or
hasten the occurrence of cachexia. Cachexia is a progressive, involuntary and significant loss of
body weight, fat and muscle. Anorexia and cachexia is one of the most debilitating and life-
threatening problems in palliative care. Cachexia is associated with a lower quality of life, poorer
prognosis, and poorer treatment response; and is a source of significant distress for the patient and
family.
Regular nutritional evaluations should be done. Nutritional counseling may be able to prevent
further wasting and preserve weight. Medications may improve appetite, muscle mass, patient
activity, and quality of life. Exercise programs can help control fatigue, improve function and quality
of life. Enteral-parenteral feeding can slow or reverse cachexia if it is due to correctable causes.
Some patients with primary cachexia due to advanced cancer will respond to nutritional
management, but most will not have a complete reversal of the syndrome, even with aggressive
interventions. Early intervention should be attempted for all patients before cachexia progresses
and becomes irreversible.
Causes
Cancer (including anorexia-cachexia syndrome), Infection, Metabolic problems (eg
hyperthyroidism, hyperthyroidism, Addison’s disease, hyperparathyroidism, hypopituitarism),
Hematologic problems (eg pernicious and other anemias), Kidney disease, Liver disease (eg
hepatitis, cirrhosis), Malabsorption, AIDS, Other chronic and advanced diseases, Chronic distress-
including chronic pain, Psychosocial (eg depression, isolation), Socio-economic, Dementia,
Delirium, Medication side-effects, Dental/ oral problems
Primary and Secondary Cachexia

Primary (metabolic) cachexia is the involuntary loss of muscle and fat directly caused by the
disease (esp cancer) related factors, and/or the body’s response to the disease (esp cancer). It
must be differentiated from secondary cachexia or starvation. Secondary (starvation) cachexia is
due to decreased oral intake, decreased gastrointestinal absorption, or gastrointestinal nutrient
loss. These may be related to oral problems (eg mucositis, taste problems, dental problems), GI
problems (eg dysphagia, delayed gastric emptying, diarrhea, malabsorption, constipation, bowel
obstruction, nausea), neurological problems (eg dementia, delirium), mood problems (eg
depression), and others. GI problems, as well as mass effects of the tumor/ hepatomegaly/ or
splenomegaly, can also cause early satiety and decreased oral intake. The primary causes and
management of primary and secondary cachexia can be different. Proteolyis is initially more
predominant than lipolysis in primary cachexia, while the reverse is usually the case for secondary
cachexia. Both primary and secondary cachexia may be present in the same patient.
Anorexia- Cachexia Syndrome in Advanced Disease

Anorexia and cachexia in most patients with advanced disease, including cancer, are due to
several processes and metabolic changes that limit the effectiveness of enteral or parenteral
nutritional interventions. Disease/Tumor related factors (including cytokines) are mediators of
proteolysis, lipolysis, neurohormonal responses, and anorexia. Early intervention should be
attempted before cachexia progresses and becomes irreversible. Not all cases of anorexia and
cachexia are due to the anorexia-cachexia syndrome; and so, early identification and management
of potentially reversible cause/s should be done. Successful management of anorexia/cachexia
requires early interventions targeting multiple mechanisms and causes.
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Anorexia, Early Satiety, Delayed Gastric Emptying, Oral Disease/Tumor Factors: Cytokines (TNF, IL-1,
problems, GI problems, Neurological problems, Mood IL-6, etc); Host response to disease/cancer:
problems, Depression, Chemo/ Radiotherapy Side- aberrant endocrine (hormonal) response,
Effects, and Other Factors aberrant neural (autonomic) response
Decreased Oral Intake, Muscle and Fat Metabolic Changes:

Malabsorption Loss Decreased Protein and Fat Synthesis,
Increased Energy Expenditure, Increased
Fat and Protein Catabolism, Increased
Cachexia Carbohydrate Consumption
Evaluation
Evaluation should be based on a good history and physical exam. Anorexia and cachexia is usually
multifactorial. Identify and manage potentialy treatable and reversible causes and factors.
Possible tests: Should be based on history and physical exam findings. This may include: CBC,
ESR, urinalysis, BUN/Crea, electrolytes, TSH/ free T4, HIV, FBG, total protein, albumin, stools
(occult blood/ culture/ ova/ parasites), Xray (chest, abdomen). Psychosocial evaluation. Further
testing may include tests for infection, endocrine problems, connective tissue and inflammatory
diseases, other imaging studies.
Determination of Fluid and Calorie Requirements

Daily Fluid Requirement
• < 1-10 kg: 100 ml/kg/day; 10-20 kg: 1000 ml/day + 50 ml per kg above 10 kg;
• 20-30 kg: 1500 ml/day + 20 ml per kg above 20 kg
Calorie Requirement (WHO, 1995; Nutrition Support Services, 1995)

1-3 years 3-10 years 10-18 years Adults
Male 60.9 x Wt - 54 22.7 x Wt + 495 17.5 x Wt + 651 15.3 x Wt + 679
Female 61 x Wt - 51 22.5 x Wt + 499 12.2 x Wt + 746 14.7 x Wt + 496
Wt: Body weight in kilograms; The above equations give the BMR (basic metabolic rate)
Multiply the Resulting Basic Metabolic Rate (BMR) with the Activity / Stress
Factor
1.3: Well nourished, inactive, with mild to moderate stress (mild-moderate illness/ surgery)
1.5: Well nourished, active with moderate stress/ or Well nourished, inactive with severe stress
(cancer, trauma, sepsis, major surgery)/ or Poorly nourished and inactive
1.7: Well nourished, active, with severe stress/ or Poorly nourished and active/ or Poorly
nourished, inactive, with severe stress
BMR (from equation) x Factor = Calorie Requirement (Kcal / day)
Protein Requirement
• Protein provides 4 kcal/g.
• Child (<20 kg): 2-3 g/kg/day; Child (>20 kg) and Adolescent: 1.5-3 g/kg/day
• Adult: Well-nourished without stress: 1 g/kg; Minimal stress: (eg mild illness): 1-1.2 g/kg;
Moderate stress: (eg moderate infection, illness): 1.2-1.5 g/kg; Severe stress: (eg severe
sepsis, illness): 1.2-2 g/kg; Very severe stress: (eg severe burn >40% body surface): 2-2.5
g/kg;
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• Protein Malnutrition: Protein requirement is increased in protein malnutrition.
• Parenteral amino acid products: requirements differ based on age and underlying diseases.
Management
General Supportive Management

Educate and counsel the patient and family.
• Educate them on anorexia and cachexia- cause/s, evaluation, and management options.
Develop realistic management goals.
• Common psychosocial issues include: loss of the experience of family meals as important times
for family interaction; loss of the chance to express love and caring in the act of feeding the
patient; misperception that the patient is depressed or has “given up”. Correct any
misperceptions and provide appropriate counseling.
• In patients with longer life expectancy explain the importance of close monitoring, and
compliance with management plans. Also explain that even aggressive management may not
be able to resolve anorexia/ weight loss/ and cachexia, especially in rapidly progressive and
advanced illnesses, such as advanced cancer.
• In patients with very limited life expectancy (days to weeks), such as advanced cancer, explain
that forcing patients to eat, or using parenteral or enteral tube feeding, may not have any
beneficial effects on quality of life or survival. Explain the complications, cost, and burden of
parenteral or enteral tube feeding. It may be more appropriate to just encourage favorite foods
for comfort and enjoyment, since nutritional value is of limited importance in these cases.
• The decision on whether or not to intiate nutritional interventions should consider the: potential
medical harm and benefit, potential psychosocial harm and benefit, patient and family’s right to
request or refuse the intervention (autonomy), and the over-all balance between the potential
harm and benefit of the intervention. The goal should be to minimize the patient and family’s
distress and suffering (whether in the form of the complications and the burden of nutritional
support, or the psychosocial distress that may result from withholding nutritional support).
• Anorexia is part of the dying process during the final days of life. During the terminal phase,
feeding should be considered only if it continues to provide comfort for the patient or the family.
Educate the family and provide appropriate counseling.
Manage underlying cause/s and exacerbating factors.
• Manage potentially reversible cause/s such as mood disorders (eg anxiety, depression), GI
disorders (eg constipation, oral or esophageal Candida, nausea and vomiting), pain and other
discomfort, heart failure, problematic medications; renal, endocrine, liver and lung disease.
• Remove excessive dietary restrictions (renal, diabetic, or low-sodium diets) to make meals
more palatable. Provide food of the proper consistency and ensure proper-fitting dental wear.
Manage anorexia
• Attempt to improve appetite. Aside from causing weight loss/ cachexia, severe anorexia also
causes distress for the patient and family.
• Interventions to improve appetite may include: appropriate meal planning, non-pharmacological
and psychosocial interventions, and medications for anorexia and cachexia.
• Some simple measures include: providing food that the patient likes, avoiding strong smells,
having food always available whenever the patient wants to eat, and eating with family and/or
friends. A small amount of alcohol (eg beer) may improve the appetite of patients who used to
enjoy a drink before dinner before they became sick.
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Start nutritional management
• Counsel the patient and family about the patient’s nutritional status (eg malnourished),
nutritional needs, and management options. Consider the patient’s clinical status, life
expectancy, the cost/ potential benefits/ risks/ complications/ and burden of each management
option, and the patient and family’s preferences.
• Nutritional management interventions may include: improving the patient’s dietary intake (eg
high caloric/ protein rich/ diet, meal schedules that improves daily intake); nutritional
supplements; adding a daily multivitamin; using omega-3 fatty acid/ fish oil; and more
aggressive interventions such as enteral tube or parenteral nutrition.
• Small frequent feedings and limiting fluid intake with meals (to prevent early satiety) may help.
Pharmacologic Management
The pharmacologic agents should be chosen based on the underlying cause/s. Corticosteroids and
progestational agents have been shown to be effective in advanced cancer. Other agents such as
dronabinol, promotility agents, testosterone, and mirtazapine are best used for particular situations,
or if corticosteroids and progestational agents cannot be used.
• Corticosteroids (e.g., dexamethasone A: 4-10mg, C: 0.04-0.15 mg/kg, qd-bid, PO/IV/IM/SC).
A trial of steroids is recommended to improve appetite. Titrate to the lowest effective dose. If
successful, continue and taper slowly in 1 1/2 to 3 weeks. Taper more rapidly if trial is
unsuccessful. Prolonged use should be avoided. Improvement in appetite may be temporary
with no associated weight gain. Other benefits may include an improved sense of well-being,
control of nausea and vomiting, and weight gain. Monitor for side effects.
• Progestational agents (e.g., megestrol acetate, start at (A: 160 mg C: 2-3 mg/kg qday) and
increase up to (A: 160 mg C: 2-3 mg/kg tid-qid) depending on response). Consider a 2-4 week
trial. Appetite stimulation lasts longer than with steroids. Other benefits may include decrease in
nausea and vomiting, and weight gain. Caution if at risk for thromboembolic episodes. Adverse
reactions include edema, vaginal bleeding, nausea, adrenal suppression, dyspnea (respiratory
alkalosis), somnolence, cognitive impairment, and psychosis.
• Omega 3 fatty acid/ fish oil alone or incombination with a progestational agent or
corticosteroid may increase appetite and result in weight gain in some patients with cancer.
• 5HT3 antagonists (eg ondansetron) (A: 8 mg C: 2-4 mg, PO, qd-bid) may improve appetite in
some patients.
• Mirtazapine is an antidepressant that may also increase appetite and weight when used in the
treatment of depression. Consider in depressed patients with significant weight loss. Start with
7.5-15 mg PO nightly. The dose can be increased q 2wks up to 45 mg nightly. Most common
adverse reactions are somnolence, constipation, and xerostomia.
• Melatonin (A: 16-20 mg C: 0.3-0.4 mg/kg,PO,qday) may improve appetite and slow weight loss
• Dronabinol has been helpful in AIDS patients, and may help a few select patients. It also
relieves chemotherapy induced nausea and vomiting. Start with 2.5 mg PO qd and titrate up to
20 mg/d, watching for mental disturbances (such as delirium, cognitive impairment, and
euphoria) and prohibitive cost.
• Gastrointestinal motility agents (e.g., metoclopramide, or domperidone) may be helpful,
especially if the patient experiences nausea and/or increased satiety/ fullness.
• Anabolic Hormones Testosterone (topical, transdermal, or IM) or other androgens (eg
fluoxymesterone) may help a few select patients, especially those with hypogonadism (eg due
to disease- eg AIDS/cancer, or treatment). A combination of aggressive nutritional
management, progestational agent/ appetite stimulant, exercise, and anabolic hormones can
help control cases of anorexia/cachexia in AIDS patients.
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• Growth Hormone Short-term growth hormone therapy has also resulted in improved lean body
mass in some cases.
Simple Regimen for Anorexia in Advanced Illness

• Educate and advice the patient and family about anorexia/ weight loss/ cachexia/ nutritional
support/ and medications including appetite stimulants.
• Discuss options for nutritional support. Note that there is currently no clear evidence that enteral
or parenteral nutrition can reverse cachexia in advanced cancer. Nutritional intervention in the
form of enteral tube or parenteral feeding may be warranted for the following situations:
advanced diseases other than advanced cancer which responds to nutritional support; patients
who still have a long expected survival period; patients who are poorly nourished wnd
undergoing specific interventions (eg surgery, bone marrow transplant, chemotherapy,
radiotherapy, head and neck cancer treatment); and patients with cancer who are still
undergoing curative interventions. Consider the patient and the family’s preferences.
• Discuss options for appetite stimulants. Patients with longer life expectancy (in months) may be
given a progestational agent (eg megestrol acetate). Corticosteroids (eg dexamethasone) can
be given to patients with shorter life expectancy (days to weeks), patients who have a history of
venous thrombosis, or patients who cannot afford the cost of progestational agents.
• Add other agents especially if there are co-existing problems: mood problems (mirtazapine),
hypogonadism/ HIV with fatigue (testosterone), GI problems (prokinetic agents), and dronabinol
(AIDS). Other options include: 5HT3 antagonists, melatonin, and omega 3 fatty acid/ fish oil.
• Anorexia-cachexia syndrome in advanced cancer involves multiple factors, mechanisms, and
mediators that limit the effectiveness of 1-2 interventions. A combination of several interventions
may be needed in an attempt to slow down or reverse cachexia, and preserve or improve
function and quality of life.
• Response to the intervention (dietary intake, appetite, and weight) should be checked regularly.
Enteral Tube Feeding

• Tube feedings may be considered: If oral feeding is not possible or inadequate and if the
patient’s life expectancy is relatively long. If the patient has a functional GI tract; can tolerate
feedings with manageable problems (eg nausea, vomiting and diarrhea); has an adequate
platelet count and no other bleeding disorder/s; and has no anatomic/ structural or mucosal
problems that will prevent tube insertion.
• Tube Feeding Method
Consider the planned duration of feeding, and risk of aspiration when selecting the appropriate
route. Use a nasogastric/ nasoenteric tube for short duration feeding, and a gastrostomy/
enterostomy tube for long duration feeding. Use nasoenteric (nasoduodenal or nasojejunal) or
enterostomy (jejunostomy) tube for patients with a high aspiration risk. Silicone or polyurethane
tubes are less likely to cause aspiration or skin/ mucosal irritation; and can be left in place for 4-
6 weeks befor the need for tube changes.
Nasoenteric tubes: Use the smallest tube possible for comfort (6-10 French nasogastric tubes
works in most cases). Fibrous or viscous formulas may require larger tubes. Check tube
placement by: auscultation, pH of the aspirate, and/ or by x-ray. Postpyloric placement can be
done with weighted tubes; and placement is checked by the pH of the aspirate, or by xray.
Gastrostomy and enterostomy tubes: These are percutaneously or surgically placed.
Complications can include cellulitis and other infections.
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Selecting the Tube Feeding Method (Ideno, 1993)
Gastrointestinal Tract Functional?
No Yes
Parenteral Nutrition Oral Diet Intake more

than 80% of needs?
No Yes
Tube Feeding more than 6 weeks? No Oral Diet Intake +

Supplements more than
80% of needs?
No Yes
Yes
Nasoenteric Tube Feeding Tube Enterostomy
High Aspiration Risk? High Aspiration Risk?
No Yes No Yes
Nasogastric Nasoduodenal or Gastrostomy Jejunostomy

Tube Feeding Nasojejunal Tube Feeding Tube Feeding
Tube Feeding
• Method of feeding
Gravity flow feeding: the flow rate is controlled with a clamp on the tubing.
Feeding pumps: a more constant flow rate may decrease the possibility of complications (eg
gastric retention, nausea, vomiting, abdominal cramping/bloating, diarrhea).
• Feeding Schedule
Continuous schedule: a feeding pump provides a continuous flow of formula. May be more
tolerable than bolus feeds.
Bolus (intermittent or gravity) schedule: more similar to normal feeding schedule.
Combination continuous/ bolus schedule: A combination of continuous feeding at night, while
the patient is sleeping; and bolus feeding in the daytime, while the patient is awake. Provide
50% of estimated needs continuously at night and the remaining 50% in 2-3 boluses during the
day. Adjust amounts as needed.
• Formula Feeding
Select the formula based on composition, GI function, age, cost, and resources (e.g., insurance
coverage). Consider unflavored products for tube feeding. If nothing by mouth (NPO) <3 days,
begin full strength at 1-2 mL/kg/hr. Increase daily by 1-2 mL/kg/hr as tolerated until the target
rate is reached. If NPO >3 days or if GI problems exist, begin half-strength formula at 1-2
mL/kg/hr. Advance concentration to full strength after 24-48 hrs, then increase rate by 1-2
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mL/kg/hr per day until target rate is reached. The formula can also be given by q2-4h bolus
feedings (2 mL/kg q2hr or 4 mL/kg q 4hr). Slow feeding rates are needed for post-gastrectomy
patients, radiation eneteritis, short bowel and malabsorption syndrome (1-2 mL/kg/hr). If fluid
requirement is not met with tube feeding, provide water as flushes. Flush tube frequently with
water, especially before and after giving medications.
• Medications and Supplements
Flush the tube before and after medication and boluses, and every 4 hours during continuous
infusion, to avoid obstruction and minimize GI irritation. Use liquid preparations for medications
when possible. Potassium, phosphorus, calcium, or magnesium supplements should be mixed
with the formula and distributed throughout the day. Give calcium and phosphorus separately.
• Mechanical Complications
Monitor for mechanical complications. Consider a promotility agent when there is a high gastric
residual due to delayed gastric emptying. Elevate the head at least 30" during and after feeding.
Tape the tube well to avoid skin pressure and irritation. Advice the patient and caregiver about
good enterostomal care to prevent irritation and infection around the ostomy site. Use topical or
oral antibiotics for infection.
• Monitoring
Monitor closely. Monitor body weight, fluid input and output, and GI function. Regularly check
the fluid balance, electrolytes, calcium, phosphorus, magnesium, and liver function tests.
Refeeding syndrome is seen when patients with depleted nutritional stores receive enteral or
parenteral feeding. Metabolic problems include fluid shifts, hypokalemia, and
hypophosphatemia. Monitor more closely and increase feeding more gradually if the patient has
been chronically deprived of adequate nutrition.
• Total parenteral nutrition (TPN) can be used when enteral feeding cannot provide adequate
nutritional support or when enteral feeding is contraindicated. A central venous catheter is
needed if total nutritional support is planned by TPN over many weeks or months.
Bowel Obstruction
Bowel obstructions occurs in about 3-5% of palliative care patients. Obstructions may cause
significant pain and discomfort.
Types of obstruction
A simple obstruction is blocked in 1 locations. A closed-loop obstruction is blocked in 2 locations. A
closed-loop obstruction may develop when the bowel twists around on itself. A strangulated
obstruction, involves decreased blood flow to the bowel. If this is not resolved, it becomes an
incarcerated obstruction, and the bowel will become necrotic.
The obstruction can be mechanical or nonmechanical. Mechanical factors cause a narrowing of the
intestinal lumen (e.g., inflammation or trauma to the bowel, neoplasms, adhesions, hernias,
volvulus, or a compression from outside the intestinal tract). Nonmechanical factors include those
that interfere with the muscle action or innervation of the bowel: paralytic ileus, mesenteric embolus
or thrombus, and hypokalemia.
Causes
Eighty percent of bowel obstructions occur in the small intestine (usually in the ileum); and 20% in
the colon. Small bowel obstructions are caused often by adhesions or hernias; large bowel
obstructions are caused by carcinomas, volvulus, or diverticulitis. The most common malignancies
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that cause bowel obstruction are cancers of the colon, stomach, and ovary; other causes include
uterine, prostate, bladder, and pancreatic cancer. Extra-abdominal cancers (such as lung and
breast cancers and melanoma) can spread to the abdomen, causing bowel obstruction. Patients
who have had abdominal surgery or abdominal radiation are also at higher risk. Bowel obstructions
are most common during advanced stages of disease.
The cause is often multifactorial. It may include:
— Mechanical block from intraluminal or extrinsic compression; Motility/functional block from
malignant involvement of autonomic nerves or intestinal muscle;
— Obstruction at multiple sites;
— Other factors such as edema, fecal impaction, fibrosis, fatigues muscle and side-effect of drugs
may contribute to intestinal obstruction.
— Strangulation or bowel ischemia is rare in malignant bowel obstruction, which makes non-
surgical management less risky than in other forms of bowel obstruction.
Evaluation
Assess for abdominal pain, vomiting, and evidence of the passage of flatus or stool. A complete
blood cell count, electrolyte panel, and urinalysis for fluid and electrolyte imbalance and/or sepsis.
An elevated WBC suggests infection and/or bowel necrosis. Flat and upright abdominal films, and
barium enema may be needed to determine cause and location of obstruction. Xray findings in
obstruction may include: distended bowel with air and fluid proximal to the obstruction, empty
bowel distal to the obstruction, and air-fluid levels on upright films (hairpin loops or step-ladder
distribution). While xray findings in ileus may include diffuse bowel distension with air and fluid.
Upper gastrointestinal series is contraindicated with an acutely presenting obstruction because it
can cause a partial obstruction to become complete or may further complicate a total obstruction.
Endoscopy can help determione the exact cause, once the site of obstruction has been determined
on imaging studies. CT of the abdomen can help determine the general extent of the disease. For
suspected perforation of the bowel immediate medical/ surgical intervention is indicated.Suspected
bowel obstruction in the terminally ill cancer patient should not be considered an emergency,
because the course of the obstruction is generally gradual. Compression of the lumen tends to
occur slowly and often remains partial.
Signs and Symptoms of Bowel Obstruction

• Nausea and vomiting: occurs earlier and worse with gastic contents +/- bile +/- mucous in
duodenal or jejunal obstruction; occurs late, if ever it occurs, and may be feculent in colonic
obstruction; rarely profuse with some gastric contents +/- bile in ileus.
• Pain: abdominal or visceral pain (often near site of obstruction); brief sharp colicky periumbilical
pain suggests a small intestinal obstruction; a deeper, less sharp, longer duration colicky pain
suggests a colonic obstruction; absent colicky pain may be due to adynamic ileus.
• Abdominal distension (worse with obstruction in large intestine); Small bowel obstruction may
not cause abdominal distension, but it may also cause a moderate abdominal distension with
hyperactive bowel sounds, and abdominal pain.
• Bowel Sounds: absent bowel sounds (complete obstruction); high-pitched or tympanic bowel
sounds (partial obstruction). Small intestinal obstruction is usually associated witrh normal
bowel sounds; while colonic obstruction is associated with hyperactive bowel sounds
(borborygmi).
• Bowel Movement and Flatus: History of infrequent bowel movements and flatus (partial
obstruction); history of absent bowel movements and flatus (complete obstruction)
• Anorexia
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Note: Clinical features are variable and depend on whether the obstruction is partial or complete,
high or low, acute or subacute, etc. Vomiting, colic and pain related to abdominal tumor occurs in
most patients. Distention is greater in lower bowel obstruction and bowel sounds vary from absent
(adynamic obstruction) to hyperactive. Bowel habit varies from absolute constipation to diarrhea.
Management
Initial Management
Obstructions can resolve spontaneously, with good palliative approach. Reversal can even be
facilitated with an appropriate, individualized approach.
• Serial examinations to monitor progression.
• Trial of steroids, such as Dexamethasone (A: 8-16 mg/day, C: 0.03-0.1 mg/kg/day div in 3-4
doses, PO/IV/IM/SC) for up to one week. May be beneficial for low bowel obstruction and
reduction of edema in functional obstruction.
• Use of prokinetic, eg. Metoclopramide (A: 5-15 mg/dose C: 0.1-0.2 mg/kg/dose PO/IV/IM/SC
QID). May overcome functional obstruction. May be used carefully in patients with only partial
obstruction. It will exacerbate colic and vomiting in complete mechanical obstruction and
therefore must be discontinued if this is the case.
• Stool softeners can soften stool to pass through an obstruction (see section on Constipation).
• Enemas can overcome severe constipation, which may have precipitated an obstruction.
• NG tubes (for short duration management) or venting gastrostomies (alternative to NG tube for
long duration management) are only needed if adequate medical management fails to relieve
distressing symptoms (eg severe, frequent N/V- especially if occurring 2 or more episodes
every 8 hours).
• Volume resuscitation, correction of electrolyte abnormalities, and transfusion if necessary.IV/SC
hydration is case dependent. It should be considered if a patient is thirsty, or if it is causing
problems that may cause additional distress (eg delirium, complications of kidney failure).
However patients should be allowed to drink as they wish. They will still absorb oral fluids above
the level of the block and usually remain hydrated.
Decompression
When bowel obstruction is partial, decompression of the distended bowel may need nasogastric or
intestinal tubes. Surgery may be needed if there is complete, acute obstruction. Self-expandable
stents (esophageal, biliary, gastroduodenal, and colorectal) have been used in some studies to
decompress complete, acute malignant bowel obstruction. Surgical palliation, may benefit patients
with advanced cancer and chronic, progressive bowel obstruction. Stents may be placed under
endoscopic guidance, with or without fluoroscopy. If neither surgery nor stenting is possible, a
gastrostomy tube provides decompression of air and fluid that causes visceral distention and pain.
The drainage bag can be concealed under clothing. When the valve between the tube and bag is
open, the patient may be able to eat or drink by mouth without any discomfort since food is drained
into the bag. However, dietary discretion is advised to avoid tube obstruction by solid food. If the
obstruction improves, the patient may then receive enteral nutrition.
Symptom management should target the distressing symptoms associated with bowel obstruction;
this may include: nausea and vomiting, colicky pain, continuous pain, symptoms of dehydration (eg
dry mouth), constipation, and paradoxical (overflow) diarrhea.
To relieve abdominal pain, opioid analgesics may be necessary. Anticholinergics (such as
hyoscine butylbromide, scopolamine) may decrease bowel spasms and therefore yield pain relief.
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If the bowel obstruction is thought to be functional, a prokinetic such as metoclopramide is used.
The synthetic somatostatin analog octreotide, inhibits the release of several gastrointestinal
hormones and reduces gastrointestinal secretions. Octreotide may reduce the nausea, vomiting,
and abdominal pain of malignant bowel obstruction. A combination of Octreotide + an
anticholinergic is very effective. If this combination is ineffective, consider adding corticosteroids
(eg Dexamethasone).
Pain
• Provide adequate pain relief.
• For continuous moderate to severe pain, particularly less colicky/cramping pain, consider
opioids (eg tramadol, morphine, hydromorphone). For patients who are already on a chronic
opioid regimen, resume their regimen in SC/IV/SL form. Increase dose as needed. Intestinal
obstruction is not a contraindication for opioids.
• For cramping pain (colic), decrease or discontinue irritant/stimulant laxatives and prokinetic
agents (eg metoclopramide).
Use an antispasmodic/ anticholinergic agent such as:
Hyoscyamine (A: 0.125-0.25 mg PO/SL, 0.25-0.5 mg IV/IM/SC. C: <2 yr old: 3-4 mcg/kg/dose,
>2 yr old: 2.5-3 mcg/kg/dose, PO/SL, tid-qid)
Glycopyrrolate (A: 1-2 mg PO, 0.1-0.2 mg/dose IV/IM/SC. C: 0.04-0.1 mg/kg/dose PO, 0.004-
0.01 mg/kg/dose IV/IM/SC, tid-qid)
Hyoscine-N-butylbromide A: 10-20mg/dose C: 5-15 mg/dose PO/IV/IM/SC 3-5x/day
• If pain is unrelieved, consider a celiac plexus block.
Nausea and Vomiting
• Haloperidol A: 1-5 mg C: 0.02-0.1 mg/kg PO/IV/IM/SC TID; or A: 5-15 mg/day C: 0.1-0.3
mg/kg/day continuous IV/SC infusion; for SC, mix with dextrose; less adverse effects than
chlorpromazine.
• Chlorpromazine A: 10-25 mg/dose C: 0.2-0.5 mg/kg/dose PO/IV/IM/PR TID-QID. Sedating. SC
can cause skin irritation. Cardiovascular side-effects (eg hypotension).
• Hydroxyzine A: 25-50 mg/dose C: 0.5 mg/kg/dose PO/IV/IM/SC QID.
• Ondansetron A: 8-12 mg/dose C: 4 mg/dose PO/IV/IM TID
• Metoclopramide A: 5-15 mg/dose C: 0.1-0.2 mg/kg/dose PO/IV/IM/SC QID. May cause colic.
Use only for patients with partial obstruction, and no colicky pain (will worsen pain)- causes less
colic with colonic obstructions than small intestinal obstructions.
• Steroid Trial: Consider adding a steroid to above agents (see ‘steroid trial’ below).
• It may be difficult to eliminate vomiting completely, but try to reduce it to 1-2 episodes a day.
The patient will need much reassurance that this is okay. Most patients will tolerate occasional
vomiting as long as the nausea is under control.
• Severe nausea and vomiting may require an anti-emetic (listed above), and drugs to reduce GI
secretions anticholinergic and/or octreotide.
Persistent Vomiting of Secretions (despite above measures)
• Hyoscine-N-butylbromide A: 10-20mg/dose C: 5-15 mg/dose PO/IV/IM/SC 3-5x/day. Reduce
gastric secretions and reduce the frequency and volume of vomits. Reduces peristalsis and
colic. But it can exacerbate reversible obstruction.
• Octreotide A: 0.1-0.6 mg/day C: 1-5 mcg/kg/day SC/IV by confinuous infusion or bolus bid-tid.
Expensive; reduces gut secretions
• May use an anti-cholinergic agent (hyoscine butylbromide) and octreotide in combination.
Constipation (in partial or subtotal obstruction)
• Docusate A: 100 mg/dose C: 5-15 mg/dose PO div bid-qid. Less colic than stimulant laxatives.
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• Lactulose A: 10-20 mg/dose C: 5-10 mg/dose PO qd-bid
• Na Picosulfate A: 5-10 mg/dose C: 2.5-5 mg/dose PO qd-bid
Steroid Trial
• Steroids are occasionally added to the drug regimen to help relieve symptoms by reducing
edema leading to better motility. Steroids produce mixed results; discontinue if ineffective in 5
days.
• Dexamethasone A: 2-4 mg, C: 0.01-0.8 mg/kg PO/IV/IM/SC tid-qid.
Surgical Intervention
• Surgery may be appropriate for 10-30% of patients.
• Surgery may be considered if:
-- A suspected reversible cause, eg. adhesions or discrete correctable obstruction.
-- The patient’s general condition and nutritional status is good.
-- Absence of ascites.
• Evaluate thoroughly if the patient has previous failed chemotherapy/abdominal radiotherapy
procedures that may cause complications.
• Prior to surgery, the patient can be started on a regimen which includes: daily octreotide
(0.3mg/day), fluid and electrolyte support and replacement, NG tube decompression, and IV
antibiotics. This regimen can minimize post surgical complications.
Intravenous Hydration and Total Parenteral Nutrition

• The decision to use IV hydration and/or IV nutrition for the terminal care of a patient with
inoperable bowel obstruction should be made on a case-to-case basis.
• Careful hydration can significantly decrease nausea and vomiting in some patients, but
overhydration can also increase secretions and swelling- resulting in increased distension, pain,
nausea and vomiting.
• TPN may be appropriate if: the patient/ family wants to continue to provide nutritional support
(via TPN), especially if the patient is suffering from secondary cachexia (starvation) that may
partly respond to TPN.
Inoperable Malignant Bowel Obstruction

• For inoperable malignant bowel obstruction, one must try to control symptoms- especially pain,
nausea, and vomiting, until death.
• NG tube is needed for severe nausea and vomiting until symptom control is achieved by
medications. If only partial symptom control is achieved by medications, then the NG tube may
be converted to a percutaneous gastrostomy/ PEG tube.
• Management usually involves a 24 hr parenteral combination regimen- given as continuous
infusion (or regular boluses if infusion pumps or syringe drivers are not available).
--- This includes: an anti-secretory agents such as hyoscine butylbromide (A: 30-60 mg/day C:
0.5-1 mg/kg/day) and/or octreotide (A: 0.1-0.6 mg/day C: 2-6 mcg/kg/day); an anti emetic such
as haloperidol (A: 1.5 mg/day C: 0.03 mg/kg/day); and an opioid analgesic (eg morphine).
--- Another commonly used combination SC regimen includes: morphine + haloperidol (A: 1.5
mg/day C: 0.03 mg/kg/day) + octreotide (A: 0.1-0.3 mg/day C: 2-6 mcg/kg/day) + hydroxyzine
(A: 25 mg/day C: 0.5 mg/kg/day) or diphenhydramine (A: 25-50 mg/day C: 0.5-1 mg/kg/day).
--- A steroid may also be added (eg dexamethasone A: 4-10 mg/day C: 0.08-0.2 mg/kg/day).
• Partial or reversible obstruction may be resolved by a combination of octreotide, a promotility
agent such as metoclopramide or domperidone, and dexamethasone.
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Constipation
Constipation is the infrequent or difficult passage of stool (defacation) associated with decreased
number of stool which may or may not be abnormally hard. It is experienced by as many as 50% of
palliative care patients; and almost all patients on opioid therapy. Constipation commonly involves
the prolonged transit time of feces in the colon, which leads to greater fluid absorption and may
result in the passage of drier, harder stools. It can cause discomfort or pain. Fecal impaction, the
accumulation of dry, hardened feces in the rectum or colon, can be life-threatening. Patients with
impaction may present with circulatory, cardiac, or respiratory symptoms rather than with
gastrointestinal symptoms. If the fecal impaction is not recognized, it may progress and result in
death.
Constipation can be characterized by the occurrence 2 or more of the following symptoms at least
25 percent of the time: straining, hard stools, incomplete evacuation; and/or less than 3 bowel
movements per week (or less than every 3 days or less than is usual for the patient).
Causes
• Diet: Insufficient fiber or bulk in diet. Decreased food intake.
• Inactivity: Not ambulatory, decreased activity or ambulation, bed bound, wheelchair bound
• Malnutrition: autonomic neuropathy related to the anorexia/cachexia/ asthenia syndrome of
advanced cancer
• Drugs: Chemotherapy (e.g., any agent that can cause autonomic nervous system changes
such as vinca alkaloids, oxaliplatins, taxanes, and thalidomide), Opioids, Sedatives,
Anticholinergic preparations (e.g., gastrointestinal antispasmodics, antiparkinsonism agents,
scopolamine, oxybutinin, and tricyclic antidepressants), Promethazine, Diphenhydramine,
Lithium, Verapamil, Bismuth, Iron, Aluminum and Calcium salts and Antacids, Diuretics,
Tranquilizers and Sleeping Medications, General anesthesia and pudendal blocks etc. Use of
certain drugs lead to motility and other problems.
• Poor fluid intake/ dehydration: Stool water content depends on the patient’s hydration status,
how much water is absorbed from and secreted into the intestine and bowel motility or how fast
stool moves through the bowel.
• Problems affecting motility: Prolonged immobility and/or inadequate exercise. Patients with
low-activity levels (bed-ridden, dying patients and patients with advanced neurodegenerative
disorders) lead to motility problems.
• Altered bowel habits: Repeatedly ignoring defecation reflex, Excessive use of laxatives and/or
enemas. Ignoring urge to defacate due to various reasons, e.g. pain on defacation.
• Bowel disorders: Irritable colon, diverticulitis, abdominal tumor. Rectal tears after passing
hard, large stools can cause pain on defacation, and anal spasms. Neuromuscular disorders
(disruption of innervation leads to atony of the bowel): Neurological lesions (cerebral tumors),
Spinal cord injury or compression, Paraplegia, Stroke with paresis, Weak abdominal muscles.
• Metabolic disorders: Hypothyroidism and lead poisoning, Uremia, Dehydration,
Hypercalcemia, Hypokalemia, Hyponatremia.
• Problems Associated with Depression: Anorexia, Immobility, Antidepressants.
• Inability to increase intra-abdominal pressure: Emphysema, Any neuromuscular impairment
of the diaphragm or abdominal muscles, Massive abdominal hernias.
• Atony of muscles: Malnutrition, Cachexia, anemia, or carcinoma, Senility.
• Environmental factors: Inability to get to the bathroom without assistance, Unfamiliar or
hurried environment, Excess heat leading to dehydration, Change in bathroom habits (e.g., use
of a bedpan), Lack of privacy. Shy/ nervous about using toilet outside the home (esp. children).
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• Narrowing of colon lumen: Related to scarring from radiation therapy, surgical anastomosis,
or compression from growth of extrinsic tumor.
Symptoms
• Irregular bowel movements
• Diarrhea may occur with constipation. Overflow can present as diarrhea or fecal soiling.
• Nausea and vomiting
• Abdominal discomfort
Evaluation
A normal bowel pattern is having at least 3 stools per week and no more than 3 per day; however,
these criteria may be inappropriate for patients with advanced disease. Constipation is also an
uncomfortable subjective symptom of decreased frequency with incomplete passage of dry, hard
stool. A thorough history along with a physical examination can identify possible causes of
constipation. Determine what is normal for the patient: frequency, amount, and timing; time of last
bowel movement; amount, consistency, and color of last stool, passage of blood; symptom onset;
symptoms of abdominal discomfort, cramping, nausea or vomiting, pain, excessive gas, or rectal
fullness; diet; usual amount of fluids are taken daily; medications; regular use laxatives or enemas;
what relieves constipation; and passage of flatus. The abdomen should be examined for distention,
masses, rigidity, or tenderness. Auscultate for bowel sounds (present, absent, hyperactive, or
hypoactive). A digital rectal examination should be done to rule out fecal impaction. A positive test
for occult blood may indicate an intraluminal lesion. If cancer is suspected, the GI tract should be
thoroughly evaluated. Patients with colostomies should also be assessed for constipation. Irrigation
of the colostomy should be monitored for proper technique.
A plain abdominal xray can be obtained to help assess the severity of constipation using a
constipation scoring system that is based on the amount of stool in the ascending, transverse,
descending colon, and rectum. Each part is given a score from 0 to 3: No stool=0; stool in <50%=1;
stool in >50%=2; stool in 100% of the lumen=3. A total score of 7 or more, suggests severe
constipation.
Management
General Management
• Avoid and manage dehydration; increase fluid intake.
• Avoid and manage inactivity; encourage regular exercise- even as simple as short walks.
Increase activity level as tolerated. Abdominal exercises in bed or moving from bed to chair if not
ambulatory.
• Encourage high-fiber foods such as fruits (e.g., raisins, prunes, and apples), vegetables (e.g.,
squash, broccoli, carrots, and celery), and whole-grain cereals, breads, and bran. Increased fiber
must be accompanied by increased fluid intake or constipation may result. Contraindicated in
patients at increased risk for bowel obstruction (eg history of bowel obstruction or status
postcolostomy).
• Consider a warm drink approx. 30 minutes before time of patient’s usual defecation.
• Regular bowel regimen based on what is appropriate and convenient for the patient.
• Privacy, relaxed, and quiet time at time for defecation.
• Toilet or bedside commode (avoid bedpan if possible)- optimizes use of abdominal muscles and
gravity. Provide appropriate assistive devices if needed.
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Includes the administration of saline or chemical laxatives, suppositories, enemas, or agents that
increase bulk. Avoid rectal agents in patients at risk for thrombocytopenia, leukopenia, and/or
mucositis. Avoid anal manipulation, in the immunocompromised patient (i.e., no rectal
examinations, no suppositories, and no enemas); these can cause anal fissures or abscesses.
Avoid manipulation of the stoma of a patient with neutropenia. Laxatives used to decrease
constipation also contribute to the development of constipation and impaction. Repeated and
increasing doses of laxatives makes the colon less sensitive to its intrinsic reflexes stimulated by
distention.
Bulk Forming Agents - Psyllium, methylcellulose, barley malt extract, Fiber-Malt, etc.
Onset of Action: 12 to 48 hours. Natural or semisynthetic polysaccharide and cellulose. They hold
water in the intestinal tract, soften the stool, and increase the frequency of the passage of stool.
Psyllium decreases the actions of certain drugs like salicylates, nitrofurantoin, and digitalis. These
agents are not recommended for opioid induced constipation, disorders of decreased motility,
intestinal obstruction, or dehydration. Patients should take these with adequate water and maintain
adequate hydration to avoid the risk of developing a bowel obstruction. Bulk forming agents may
not be appropriate for many patients with advanced disease.
Saline laxatives - magnesium sulfate, milk of magnesia, sodium phosphate, monobasic and
dibasic sodium phosphate.
Onset of Action: 0.5 to 3 hours. Osmotically attracts water into the lumen of the intestines.
Increased fluid alters the stool consistency, distends the bowel, releases cholecystokinin, and
induces peristaltic movement. Cramps may occur. Sulfate salts are the most potent. Repeated use
can alter fluid and electrolyte balance. Avoid magnesium-containing laxatives in patients with renal
dysfunction. Avoid sodium-containing laxatives in patients with edema, congestive heart failure,
megacolon, or hypertension.
Stimulant laxatives - senna, bisacodyl (oral and suppository), cascara, danthron
Onset of Action: 6 to10 hours, except for bisacodyl suppository (0.25-1 hr). Increase motor activity
of the bowels by directly acting on the intestines, stimulating the myenteric plexus; and altering
water and electrolyte excretion. May cause cramping. Prolonged use causes laxative dependency
and loss of normal bowel function. Bisacodyl must be excreted in bile to be active and is not
effective with biliary obstruction. Avoid bisacodyl with ulcerative lesions of the colon. Antacids and
milk cause premature dissolution of the enteric coating; avoid giving bisacodyl within an hour of
these to prevent gastric or duodenal stimulation.
Castor oil (onset of action: 2-6 hrs) is converted to its active component, ricinoleic acid, in the
bowel. It directly acts on the intestinal mucosa and nerve plexus; and alters water and electrolyte
excretion. It can provide a more complete evacuation than the above stimulant laxatives. However,
it may also cause more severe cramping, laxative dependency and loss of normal bowel function.
Lubricant laxatives – mineral oil, glycerine
Onset of Action: mineral oil (6-8 hrs); glycerine (0.25-1 hr). Lubricate intestinal mucosa and soften
stool. Administer on empty stomach at bedtime. Prevents absorption of oil-soluble vitamins and
drugs. It can cause lipid pneumonitis and should be avoided for patients at risk for aspiration. May
interfere with postoperative healing of anorectal surgery. Avoid giving with docusate sodium with
mineral oil, since it may increase the systemic absorption of mineral oil. In addition to its
lubricationg action, glycerine is also an osmotic laxative (softens stool by osmosis).
Surfactants, Fecal Softeners - docusate sodium, docusate calcium, docusate potassium
Onset of Action: 12-72 hrs. These agents soften the stool by facilitating the admixture of fat and
water in the stool, which results in greater water retention in the stool. Colonic resorption of water
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from the forming stool makes these agents less effective; they should not be used as monotherapy
in most cases but may be useful given in combination with stimulant laxatives. May increase the
systemic absorption of mineral oil.
Hyperosmotic Laxatives -- lactulose, glycerine
Onset of Action: lactulose (24-48 hrs); glycerine (0.25-1 hr). Hyperosmotic laxatives increase and
retain water in the colon through their osmotic action. Lactulose is a synthetic disaccharide that
passes to the colon undigested. When it is broken down in the colon, it produces lactic acid, formic
acid, acetic acid, and carbon dioxide, which increase the osmotic pressure, increasing the amount
of water held in the stool, which softens the stool and increases the frequency of passage.
Excessive amounts may cause diarrhea with electrolyte losses. Avoid giving to patients with acute
abdomen, fecal impaction, or obstruction. Lactulose is also used for hepatic encephalopathy.
Glycerine suppositories soften stool by osmosis and act as a lubricant; sodium stearate causes
local irritation. Polyethylene glycol (PEG) is another hyperosmotic laxative that is used as a bowel
evacuant and for the management of constipation that is refractory to other agents.
Bowel Evacuants: polyethylene glycol (PEG), polyethylene glycol and electrolyte solution (PEG-
ES)
PEG is a water soluble polymer. PEG is a hyperosmotic laxative which osmotically attracts water
into the lumen of the intestines. However, the combination of PEG and the electrolyte solution
(PEG-ES) results in no significant net absorption or excretion of electrolytes and water. Large
volumes can be given without causing any significant change in water and electrolyte balance.
Commonly used to clear bowel for procedures, such as colonoscopy, with minimal water and
sodium loss or gain. Serve chilled to improve palatability. Can be stored up to 48 hours in the
refrigerator. Avoid in GI obstruction, perforation, colitis, megacolon, or ileus. For constipation that is
refractory to other agents, small doses of PEG can be used; onset of action is 2-4 days. Avoid
using PEG for more than 2 weeks if possible.
Other approaches: Prokinetic drugs (metoclopramide, domperidone) may be helpful especially in
decreased transit time due to spinal cord injury or refractory constipation; they have a variable
onset of action. Erythromycin can also increase bowel motility. For opioid induced constipation, oral
naloxone may help; its poor bowel absorption prevents any adverse systemic effects.
Management Guide
• Record bowel movements daily.
• Digital rectal exam. Consistency of stool can guide treatment. When stool is hard, increase stool
softeners (e.g., docusate). When stool is soft, try bisacodyl or senna.
• Encourage adequate fluid intake.
• Patients on diets which contain little fiber may improve if fiber, usually psyllium, is added. Note:
In patients with minimal fluid intake or poor gut motility (e.g. the dying patient) additional fiber
can worsen the situation, causing a 'soft impaction'.
• Start with agent that addresses most likely cause/causes.
• Start a bowel stimulant simultaneously with initiation of opioid therapy (for small children,
docusate or lactulose are sometimes used first). Also start with a bowel stimulant (e.g. senna)
for constipation in a patient who is on opioids. Increase the dose as needed over a week; and if
still not relieved, add a second agent (usually a stool softener). Before increasing motility,
evacuate existing, constipated or impacted stool to avoid cramping.
For example, begin with Senna (Dose: varies per product, qhs-bid, also comes in liquid
formulations, onset: 8-12 hrs) or Bisacodyl (A: 10 mg, C: 5 mg, PO, qd, onset: 10-12 hrs).
Titrate the dose as needed. Then add a stool softener, such as Docusate (A:100—240 mg. C:<
3 yr=10-20mg, 3-6yr=20-30 mg, 6-12yr=30-75mg, or 2.5 mg/kg, PO, qhs-bid, onset: 24-48 hrs).
Titrate up the dose if needed.
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• Docusate or lactulose (A: 15 ml, C: 0.3 ml/kg, PO, qd-tid, onset: 24-48 hrs) are usually used first
in patients who are not on opioids. If docusate is used with a contact cathartic (eg senna, castor
oil) on a chronic basis, there is a mild increase in risk of hepatotoxicity; monitor liver function
regularly.
• Use rectal preparations if unable to swallow. For hard stools, use a glycerine (A: 2-4g, C: < 1yr
= 1g, 1-12yr = 2g, qd) or docusate suppository; for soft stools, use a bisacodyl suppository (A:
10 mg, C: 5 mg, PR, qd, onset: 20-60 mins). If the rectal vault is empty, use bisacodyl
suppository to bring the stool down or high phosphate enema.
• If rectum is empty on rectal exam, a plain abdominal Xray may assist in management. If bowel
obstruction, treat appropriately.
• Consider increasing stool water content by limiting absorption and/or increasing secretion into
the gut by adding osmotically active particles that retain water (e.g. Mg salts, or non-absorbable
sugars: sorbitol and lactulose). Note: Magnesium and phosphorus salts are contraindicated in
renal failure. Hyperosmolar solutions may worsen dehydration by drawing body water into the
gut lumen. Extremely sweet sorbitol and lactulose may be difficult to for patients to tolerate.
Glycerin suppositories can provide lubrication and osmotically draw-in water.
• Consider triple therapy: bowel stimulant (eg senna, bisacodyl) +osmotic cathartic (eg lactulose)
+ stool softener (eg docusate).
• If no bowel movement within 3-4 days, or severely constipated, even while on combination
therapy, administer a fleet or phosphate enema (A: 3/4-1 enema, C: 3-7yr = 1/3-1/2 enema, 7-
12yr = 1/2-3/4 enema, PR, qd) or bisacodyl suppository. If still no bowel movement, administer
an oil retention enema followed by a soap suds enema several hours later (Caution: Be careful
when using soap suds enema on debilitated, frail patients; consider phospho-soda enema.
Mineral oil can be used as an enema but should be used with caution if PO, as pneumonitis can
result if aspirated.)
• If impaction in proximal colon, consider magnesium citrate, or phosphorus salts.
• Manual disimpaction is seldom necessary. If it must be done, premedicate with an opioid,
together with a sedative such as midazolam, if needed.
• Prokinetic Agents
metoclopramide (A: 5-10mg, C: 100 mcg/kg, PO, tid-qid; gradually increase as needed;
maximum dose (A: 80-100 mg/day C: 1.5-2 mg/kg/day)
domperidone (A: 10-20 mg C: 0.2-0.4 mg/kg PO tid-qid)
Fecal Impaction
The patient with impaction may exhibit symptoms similar to constipation or symptoms unrelated to
the gastrointestinal system. Pressure on the sacral nerves, causes back pain. Pressure on the
ureters, bladder, or urethra, causes urinary symptoms, such as increased or decreased frequency,
urgency, or retention. Abdominal distention might limit the movement of the diaphragm, causing
insufficient ventilation, subsequent hypoxia and left ventricular dysfunction, angina or tachycardia.
Vasovagal response due to pressure of impaction, leads to dizziness and hypotension.
Movement of stool around the impaction may result in diarrhea, which can be explosive. Activities
that increase intra-abdominal pressure (eg straining or coughing) may cause leakage of stool.
Leakage may be accompanied by nausea, vomiting, abdominal pain, and dehydration and this
should lead one to strongly suspect impaction. Thus, a patient with an impaction may even present
confused and disoriented, tachycardic, diaphoretic, febrile, with an elevated or low blood pressure,
and/or abdominal fullness or rigidity.
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Evaluation
Assessment includes those discussed previously for constipation. In addition, abdominal x-ray (flat
and upright) would show loss of haustral markings, gas patterns reflecting gross amounts of stool,
and dilatation proximal to the impaction. A complete blood cell count, appropriate blood
chemistries, chest x-ray, and an electrocardiogram can be performed as indicated to rule out other
problems. If the patient is dehydrated, the blood urea nitrogen – creatinine ratio, and serum
osmolality may be elevated. An elevated of the hemoglobin and hematocrit may be due to
hemoconcentration. The white blood cell (WBC) count may be slightly elevated, especially if the
patient is febrile. Rule out an an obstruction, perforation, infection, or inflammatory process, if the
patient has an extremely elevated WBC count, a high fever and abdominal pain.), there is a risk of
bowel perforation if the cecum is markedly distended (A: diameter ≥12 cm).
Management
Hydrate and soften the stool so that it can be removed or passed. Enemas (oil retention, tap water,
or hypertonic phosphate) lubricate the bowel and soften the stool. However, enemas should not be
used in excess, since fecal impaction can irritate the bowel wall, and enemas in excess may
perforate the bowel. Nonstimulating bowel softeners such as docusate can be used to help soften
stool higher in the colon. Glycerin suppositories can also be used. Agents that stimulate the bowel
or cause cramping should be avoided to prevent further bowel damage. Impaction beyond the
reach of the fingers can also be managed using an endoscope (colonoscope/ sigmoidoscope).
Manual Disimpaction Procedure: Before the procedure, administer a non-stimulating oral laxative
(eg docusate) and an enema to lubricate the bowel (eg oil retention enema: 120 ml of mineral oil or
olive oil high in the colon via foley catheter- may inflate balloon for 10 minutes to minimize return of
oil). Premedicate with morphine (usual dose A: 5 mg C: 0.1 mg/kg) +/- sedative (midazolam).
Position the patient on his/her side with knees flexed. Apply lubricant and topical lidocaine on
gloves and into rectum. Gently dilate the anal sphincter with 1, then 2 fingers. Fragment and
gradually remove impacted stools. Administer a high tap water or sodium phosphate enema.
Cough
A cough is a physiologic mechanism to clear the airways consisting of: a deep inhalation, followed
by a closure of the glottis, an increase in intrathoracic pressure, and a forceful exhalation. It occurs
in as many as 50% of patients. Cough may lead to various other problems and complications.
Coughing can cause pain, insomnia, dyspnea, fatigue, hoarseness, and urinary incontinence; it can
lead to a feeling that something is wrong, self-consciousness, and embarassment. Problems may
occur due to the high intrathoracic and intra-abdominal pressures achieved; and these include:
cough syncope, cardiac dysrhythmias, headache, subconjuctival hemorrhage, inguinal herniation,
and gastroesophageal reflux.
Common Causes
Common causes include: chronic lung diseases (eg asthma, COPD), infection (eg sinusitis,
pharyngitis, bronchitis, pneumonia), post-nasal drip, gastroesophageal reflux, CHF, medications
(eg ACE inhibitors), pleural effusion, tracheobronchial fistula, aspiration, eosinophilic bronchitis,
and cancer (eg cancer involving the airways, lung, or pleura).
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Evaluation
Determine which specific cough-related symptoms are bothersome, to guide diagnostic testing,
and management. Assessment involves a good history and physical examination, a combination of
basic diagnostic tests (e.g. CXR); and other specific diagnostic studies (e.g. ECG, sinus imaging,
CT chest or sinuses, pulmonary function tests, sputum testing, barium swallow, endoscopy, or a
pH probe) if indicated. Patients with persistent cough with no specific clues by history and
examination and initial tests to clearly define the cause represent a common management
problem. Many patients have two or more causes, together with certain exacerbating factors.
Decide on the need for further specific diagnostic testing as opposed to trials of empiric therapy.
The decision is made with the patient, partly based on the level of subjective distress, patient
preferences, and resources.
Management
Treat any suspected infection, and empiric therapy for the most common causes of chronic cough
(rhinitis, bronchial irritation, asthma, and GERD). Often, treatment failure may be due to inadequate
intensity or duration of treatment.
Specific Management
The optimal therapy for chronic cough is treatment of the underlying disorder.
• Bronchitis or pneumonia - Antibiotic, oxygen, chest pulmophysiotherapy, nebulized normal
saline. Other agents include inhaled: beta-agonists (eg salbutamol/ albuterol) and ipratropium- for
infectious and post-infectious cough.
• Postinfectious Cough - Postinfectious cough usually responds to beta-agonist inhalers.
Ipratropium MDIs may also help. Pertussis or mycoplasma infections are treated with appropriate
antibiotic therapy.
• Cough-equivalent asthma - Beta-agonist metered-dose inhalers (MDIs). Inhaled
corticosteroids may be added optimize therapy for most patients. Some patients may require oral
corticosteroids for symptom control. Pressurized MDI alone may aggravate cough, consider using
a spacer. Eosinophilic bronchitis and postinfectious cough also responds well to this regimen.
Attempt to taper therapy to determine the actual need for chronic treatment.
• Post-nasal drip - Initial therapy may include steroidal nasal sprays, or an antihistamine-
decongestant combination. Older-generation antihistamines, may be more effective than second-
generation (nonsedating) drugs because of their additional anticholinergic activity. If drowsiness is
problematic, therapy may be started at bedtime, increasing to BID dosing later. Second-generation
antihistamines are useful for allergic rhinitis or patients who cannot tolerate older agents due to
sedation. Treat sinusitis accordingly.
• Gastroesophageal Reflux Disease (GERD) - Consider starting with maximal therapy. Avoid
reflux-predisposing foods (e.g. fatty foods, chocolate, caffeine, alcohol), tobacco cessation,
elevation of the head of the bed, and not eating within 2 to 3 hours prior to lying down are important
lifestyle adaptations that may help. Ideally, proton pump inhibitors should be used. Other measures
include H2 blockers (Ranitidine, Famotidine), prokinetic agents (eg metclopramide) and antacids
(eg Maalox/Manesium-Aluminum Hydroxide). Consider twice-daily proton pump inhibitors, dosed
just prior to the morning and evening meals; later, therapy may be decreased if proven effective.
Other combinations of the above medications may be tried.
• Congestive heart failure – Diuretics (eg furosemide), angiotensin-converting enzyme inhibitors,
oxygen, morphine, nitrates, inotropic agents, digoxin.
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• Eosinophilic Bronchitis - Inhaled corticosteroids (ICS) are usually effective; some patients will
require a short course of oral steroid therapy. Bronchodilators may also be needed.
• Chronic Bronchitis - Smoking cessation reduces symptoms in more than half of patients within
1 month. Cough frequency as well as sputum production are most effectively decreased by
ipratropium MDI. Other agents include inhaled: beta-agonists (eg salbutamol/ albuterol),
ipratropium, and steroids.
• Bronchiectasis - Excessive secretions are present. Complete cough suppression will prevent
clearance of secretions. Chest physiotherapy is useful for patients who produce large volumes of
sputum and during disease flares. May require prolonged antibiotic courses.
• Endobronchial tumor – Steroids (eg dexamethasone), palliative radiotherapy
• Pleural effusion – Diuresis (furosemide +/- spironolactone), thoracentesis +/- pleurodesis
• Aspiration - Thicken liquids and puree solids. Standard aspiration precaution measures.
• Trachea-bronchial fistula - Esophageal stent, surgical management
• Lymphangitic spread of cancer into lungs - High-dose steroid
• Angiotensin-converting enzyme inhibitors side-effect - Discontinue and/or change the ACE
inhibitor
• Secretion clearance problems - Expectorant or nebulized saline (if strong cough),
Anticholinergic. Other agents occasionally help: Acetylcysteine, Guaifenesin, Carbocisteine
Simple dry cough

Manage simple dry cough that is mild, and without dyspnea, with simple measures and cough
suppressants. Consider treating the underlying cause, especially if simple measure are not
effective. Treatment of the underlying cause can be more burdensome or complicated than simple
measures; but it can be more effective if successful.
Malignant dry cough
A tumor or an effusion may distort and irritate the airway, and cause dry cough. Treatments that
reduce the tumor size or drain the effusion may relieve the cough; these may include radiotherapy,
chemotherapy, aspiration of pleural effusion, and corticosteroids. If a tumor is the cause, a trial of
steroids such as dexamethasone A: 4-8 mg C: 0.1mg/kg daily, increased as needed to as high as
A: 10-12 mg C: 0.2 mg/kg daily can be considered while awaiting a more definitive treatment.
Steroids may also be used if oncological treatment is not considered appropriate. If steroids do
relieve the cough, taper it to the lowest effective dose that controls symptoms. Discontinue it if no
benefit is obtained, or any initial benefit is lost.
Productive or wet cough
In general, treatment should be aimed at the underlying cause when the cough is productive.
Measures to help the patient expectorate the sputum include: chest physiotherapy (eg vibratory
therapy), humidification, steam inhalation, nebulized saline, or nebulized salbutamol/ albuterol. In
the terminal stages of illness, when the patient may be too weak to expectorate the sputum,
possible measures include: opioid cough suppressant, anticholinergic agents to decrease
secretions, and anxiolytics if needed. Steroids may provide additional relief.
However, during the terminal phase, antibiotics will make little difference to the course of events.
Symptomatic management, such as control of cough, secretions, anxiety and fever, may be more
appropriate. If infected secretions are causing distress and are not easily managed by other
means, then consider giving a single intravenous dose of a broad-spectrum antibiotic- eg
ceftriaxone or cefotaxime. Decide with the family if daily antibiotic doses will be given. However,
since the goal is to provide comfort by decreasing infected secretions, it is reasonable to give
additional doses only if symptoms reoccur. Steroids may provide additional relief. Anticholinergics
may also be used to decrease secretions (also see section on respiratory secretions).
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Symptomatic Management

Simple measures such as moist inhalations or nebulized 0.9% saline, involve inspiration of moist
air, which is comforting. Boiling water should not be used for moist inhalations because of the risk
of scalding.
Sugar based preparations may be tried. The sugar content stimulates the production of saliva and
soothes the oropharynx; and the associated swallowing may also interfere with the cough reflex.
The effect is short-lived, and there may be no benefit in increasing the dose or trying another
similar compound.
Cough suppressants
Cough-suppressants are commonly used (eg Benzonatate 100 mg P0 q 4-8 hours;
Dextromethorphan A: 10-30 mg C: <6 yrs=2.5-7.5 mg, >6 yrs=7.5-15 mg PO qid).
Weak opioids such as codeine or codeine derivatives to suppress coughing (eg Codeine: A: 10-20
mg C: <6 yrs=2.5-5 mg, >6 yrs=5-10 mg PO q 4-6 hours as needed). lncrease opioid dose 25% -
50%. Morphine is an alternative if cough is not suppressed by weak opioids. The initial starting
dose will depend on the patient's previous exposure to opioids: A lower dose of morphine (A: 2.5
mg C: 0.05 mg/kg) regularly every 4 hours, and as required, is suitable for an opioid-naïve patient.
A higher dose of Morphine (A: 5-10 mg C: 0.1-0.2 mg/kg) regularly every 4 hours, and as required,
should be used for patients who have already tried codeine or codeine derivatives If the patient is
already on regular morphine: an 'as required or prn' dose of morphine can initially be used to
relieve cough. The regular dose of morphine can then be increased based on the patient’s daily
requirement of prn and regular doses. Alternatively, the daily morphine dose may be increased by
25-50%. Do not use a weak opioid such as codeine if the patient is already taking a strong opioid
such as morphine. The 'as required' (prn) dose is usually one sixth of the total daily dose of regular
morphine. Some patients with cough but no pain can benefit from a bedtime dose of morphine to
prevent cough from disturbing sleep.
Other Medications
Lidocaine spray or nebulized prevents cough when used during bronchoscopy. Nebulized lidocaine
(2.5-5 ml of 2% solution per nebulizer q 3-6 hours) is helpful in suppressing cough arising
anywhere down to the larger bronchi. Its use is limited by the unpleasant taste, the risk of
oropharangeal numbness leading to aspiration, the risk of bronchoconstriction (which may be due
to anaphylactic reaction to preservatives), and the short duration of action (10-30 minutes). Inhaled
ipratropium bromide may also reduce cough in patients with chronic bronchitis and in patients with
chronic persistent cough after upper respiratory tract infection. Expectorants and mucolytics have
been used in cases of increased sputum production. Inhaled sodium cromoglycate has also been
used chronic cough related to lung cancer.
Delirium
Delirium, or acute confusional state, is a global cerebral dysfunction characterized by disordered

awareness, attention, and cognition. Delirium occurs in 30-50% of patients with advanced cancer,
and 90% of these patients will experience delirium in the last days of life (terminal delirium). Many
episodes of delirium are reversible; therapeutic intervention can result in delirium reversal, or at
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least improvement, in 30% to 75% of episodes. Early identification and management of risk factors
reduces the occurrence and the duration of episodes.
Diagnosis
The DSM IV cites core clinical criteria for diagnosis:
• Clouding of consciousness or reduced ability to focus, sustain, or shift attention
• Perceptual disturbance, disorientation, or memory deficit that is not better accounted for by an
established dementia
• Acute onset (hours to days) and a fluctuating course
• The presence of an underlying cause such as a general medical condition (e.g., hypoxia or
electrolyte disturbance), medication, a combination of etiologies, or indeterminate etiology.
Other features include sleep-wake cycle disturbance, delusions, emotional lability, and
disturbance of psychomotor activity.
Psychomotor activity is used to classify delirium into 3 different subtypes: 1. Hypoactive, 2.
Hyperactive, 3. Mixed with both hypoactive and hyperactive features.
Etiology of Cognitive Disorders and Delirium

Delirium is often multifactorial, especially in the setting of advanced disease. Causes include:
• Direct effects of cancer on the central nervous system (CNS)
• Other conditions such as organ failure (e.g., hepatic or renal failure), metabolic or electrolyte
disturbance (e.g., hypoglycemia, hypercalcemia, hyponatremia, or dehydration), infection, and
paraneoplastic syndromes (e.g., bulbar encephalitis).
• Exogenous substances such as medications and treatments used, including chemotherapeutic
agents, interferon, glucocorticoids, and psychoactive agents such as opioid analgesics,
antidepressants, benzodiazepines, antihistamines, and other sedating agents.
• Withdrawal phenomena associated with substances such as alcohol and benzodiazepines.
Risk factors
Risk factors include: severe illness, level of comorbidity, advanced age, prior dementia,
hypoalbuminemia, infection, azotemia, and psychoactive medications. Whether patients are
withdrawn or agitated, the effect on families can be significant. Patients should be monitored
regularly. Identify patients who are amenable to early corrective action, be it alteration in drug
therapy, rehydration, identification of metabolic problems, or other factors that can be corrected.
Evaluation
• Maintain a high index of suspicion for delirium. Proper assessment is important.

• Use screening tools to assess cognition if needed (eg MMSE). Even in patients who do not
appear severely confused, but who are at risk or manifesting subtle signs. Do not rely only on
orientation questions.
• Ask about hallucinations (usually visual and tactile) and paranoid ideation.
• Assess the patient adequately and look for signs of infection, opioid toxicity (myoclonus,
hyperalgesia), dehydration, uremia, hepatic encephalopathy, constipation, etc.
• Order tests when appropriate (e.g., complete blood cell count, electrolytes, calcium [with
albumin], urea and creatinine, urinalysis, Chest Xray, oxygen saturations).
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Management
Family Education
• The treatment goal is comfort, not prolongation of life.
• Confusion and agitation are expressions of brain dysfyunction. Do not misinterpret all symptoms
as caused by pain. An excessive use of opioids, may result in aggravation of the agitation.
• Most patients have limited or no recollection of their symptoms after the episode subsides.
• Hypoactive delirium can be mistaken for depression and managed inappropriately with
antidepressants.
• Delirium may be superimposed on pre-existing dementia. This can make it difficult for the family
or care providers to recognize.
• Urinary retention and constipation in cognitively impaired patients can be misinterpreted as
agitated delirium or “crescendo” pain.
Specific Management
Identify and treat reversible causes such as drug withdrawal, dehydration, hypercalcemia, and
infection. If no obvious cause is identified; the decision to proceed with more invasive tests is
determined by the goals of care. For preterminal delirium due to reversible causes, management
should aim to control delirium and reverse the cause/s; for terminal delirium due to terminal
irreversible cause/s, management should aim to control delirium to relieve distress and suffering.
Preterminal delirium may be due to a series of causes such as a patient with infection who
becomes weak and somnolent, drink less fluid, become dehydrated, develop kidney insufficiency,
and then show symptoms of opioid toxicity, including delirium. Intervention should address all the
causes in this situation.
• Opioid toxicity: Opioid analgesics are among the psychoactive agents that precipitate delirium
most frequently. Assess for opioid neurotoxicity, eg tactile hallucinations, agitation, myoclonus,
allodynia, hyperalgesia, and seizures. Dose reduction or opioid switching in association with
assisted hydration typically allows for clearing of the offending opioid or its metabolites.
• Infection / Sepsis: Start antibiotics if appropriate. Manage based on the patient’s goals of care.
For Urosepsis, if possible, remove indwelling urinary catheter and treat infection with antibiotics.
• Drugs: Stop, wean, or decrease possible offending drugs (e.g., tricyclic antidepressants,
benzodiazepines). Nonsteroidal antiinflammatory drugs or angiotensin-converting enzyme
inhibitors can cause renal failure leading to uremia or opioid metabolite accumulation.
• Dehydration: Start intravenous infusion or hypodermoclysis with saline (if the site leaks or
swelling is uncomfortable, give 150 U hyaluronidase into the subcutaneous site before infusion;
usually unnecessary); reassess daily. Do not give hyaluronidase intravenously.
• Hypercalcemia: (See section on hypercalcemia.)
• Hypoxia: Treat underlying cause if possible and administer oxygen.
• Other Causes: Treat appropriately.
Symptom Management
Symptom management aims to reduce the patient and family’s distress and suffering. It is therefore
important to determine whether the control of delirium- and other experiences and symptoms that
may be associated with it, will provide comfort and relieve suffering. Neuroleptics are relatively safe
and effective in decreasing agitation, clearing sensorium and improving cognition. Some
controversy exists with regards to certain experiences that dying patients may experience such as:
communication with dead relatives, angels, or being welcomed to heaven. Some consider these as
hallucinations and/or delusions that are related to delirium, which should be controlled; others
consider these as important experiences in the transition from life to death, which should not be
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suppressed; and some believe that these experiences help provide comfort and relieve suffering. A
reasonable approach is to control only those symptoms and experiences that cause distress and
suffering; the family should be involved in deciding on an appropriate management approach.
Nonpharmacologic Management
Management to reduce the distress includes: the use of adequate lighting, frequent orientation,
familiar objects/ photos, relaxing/ calming music, a visible clock or calendar, limited staff changes
(and possibly one-on-one care), reduced background noise, hearing aid, eyeglasses, and the
presence of family and friends. Judicious use of physical restraints may sometimes be necessary
to prevent harm to self or others.
The mainstay of pharmacological management are the antidopaminergic neuroleptics such as
haloperidol and the newer atypical antipsychotic agents such as olanzapine, risperidone, and
quetiapine.
• Haloperidol, a neuroleptic agent with potent antidopaminergic properties, is still the drug of
choice. Has a low incidence of cardiovascular and anticholinergic effects. Can be given PO/IV/
SC/IM. Parenteral doses are roughly twice as potent as oral doses. Peak plasma
concentrations: 2 to 4 hours after an oral dose. Causes fewer extrapyramidal side effects
(akathisia, cogwheeling, rigidity, dystonias, and akinesias) when administered intravenously.
Treatment of extrapyramidal side effects: benztropine (A: 1-2 mg qday-BID). Neuroleptic
malignant syndrome is a rare complication characterized by hyperthermia, increased confusion,
leukocytosis, muscular rigidity, myoglobinuria, and high serum creatinine phosphokinase.
• Chlorpromazine is an alternative to haloperidol, but it is associated with orthostatic
hypotension and a greater level of sedation.
• Atypical neuroleptics such as risperidone, olanzapine, and quetiapine have fewer
extrapyramidal side effects than haloperidol. Olanzapine has been studied extensively, and
resulted in 76% resolution of delirium in one study. Predictors of a poor response included age
>70 years, history of dementia, central nervous system involvement with cancer, hypoxia,
hypoactive subtype, and delirium of severe intensity.
• Benzodiazepines. Benzodiazepines are generally not used as first line agents for delirium,
except in selected situations such as: severe anxiety and agitation with delirium; and alcohol or
benzodiazepine withdrawal. Lorazepam and alprazolam are relatively short-acting agents (half-
life: 10-20 hrs and 6-25 hrs respectively). Benzodiazepines are commonly used with a
neuroleptic (eg haloperidol) in patients with hyperactive agitated delirium; the decrease in
neuroleptic dose required may also help decrease the occurence of neuroleptic induced side
effects. Midazolam, a very short-acting benzodiazepine, is given by continuous subcutaneous
or intravenous infusion, to achieve deep sedation, especially in a terminal hyperactive or mixed
delirium when agitation is refractory to other treatments, eg doses of haloperidol > 20 mg/day.
• Psychostimulants like methylphenidate have been used for hypoactive delirium, with mixed
results. Its can be added to typical or atypical neuroleptics for delirium that is only partially
responsive to neuroleptics, to relieve sedation due to neuroleptics; it can also used as
monotherapy for delirium which is refratory to other agents. An improvement in cognitive
function may be seen in some patients. Use with caution in delirious patients to avoid
unmasking of paranoia, confusion and cause agitation.
Hypoactive Delirium
• Haloperidol A: 0.5-1 mg/dose Elderly: 0.5 mg/dose C: 0.01-0.02 mg/kg/dose PO/IV/IM/SC bid-
qid
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• Olanzapine A: 2.5-5 mg Prepubescent child: 1-2.5 mg qd. PO qday
• Risperidone A: 0.5-1 mg PO Prepubescent child: 0.5 mg qd. PO qday-bid
• Quetiapine A: 25-50 mg Prebubescent child: 10-25 mg qd. PO qday-bid
Moderate Hyperactive Delirium

• Haloperidol A: 0.5-1 mg/dose Elderly: 0.5 mg/dose C: 0.01-0.02 mg/kg/dose PO/IV/IM/SC q1-
4hr until calm, then bid-qid
• If more sedation is needed, or for AIDS dementia complex, add a benzodiazepine or consider
using the following instead of haloperidol:
Thioridazine A: 25-50 mg/dose C: 0.1-0.5 mg/kg/dose PO q 6-8 hours
Chlorpromazine A: 12.5-50 mg/dose C: 0.1-0.5 mg/kg/dose PO/PR/IV q 6-8 hours
• Both haloperidol and chlorpromazine potentially lower the convulsant threshold and should be
avoided or used with caution if seizure is possible. Consider atypical neuroleptics instead.
• Olanzapine A: 5-10 mg C: 6-12 yrs= 2.5 mg; >12 yrs= 5 mg PO/IM qday; may increase to bid
• Ziprasidone A: 20 mg C: 6-12 yrs= 5 mg; >12 yrs= 5-10 mg PO/IM qday; may increase to bid
• Risperidone A: 0.5-2 mg C: 6-12 yrs= 0.25 mg; >12 yrs= 0.5-1 mg PO qday-bid
• Quetiapine A: 25-50 mg C: 6-12 yrs= 12.5 mg; >12 yrs= 25 mg PO qday-bid
Severe Hyperactive Agitated Delirium

• Patients require higher or additional doses of the neuroleptic. If agitation is severe and/or further
sedation is needed, the patient may require a combination of haloperidol (or an atypical
neuroleptic) and a benzodiazepine (Diazepam, Midazolam, Lorazepam). Monitor
cardiorespiratory status.
• Haloperidol A: 2-5 mg C: 0.03-0.05 mg/kg, PO/IV/IM/SC q0.5-2hr until calm, then bid-qid
• Chlorpromazine A: 50-100 mg/dose C: 0.5 mg/kg/dose PO/PR/IV q 6-8 hours
• Olanzapine A: 5-10 mg C: 6-12 yrs= 2.5 mg; >12 yrs= 5 mg PO/IM qday; may increase to bid
• Ziprasidone A: 20 mg C: 6-12 yrs= 5 mg; >12 yrs= 5-10 mg PO/IM qday; may increase to bid
• Lorazepam A: 2-5 mg C: 0.02-0.15 mg/kg q3-4hrs, PO/IV/IM/PR, slow IV over 2-5 minutes.
• Diazepam A: 2-5 mg. C: 0.02-0.15 mg/kg, PO/SC/SL/PR/IV, q3-4hrs
• Midazolam A: 1-2 mg C: 0.02-0.05 mg/kg, may repeat q 2-4 hours as needed, SC/IM/IV. Other
routes (use IV solution): PO/Intranasal/PR, 0.3-0.5 mg/kg, may repeat q 2-4 hours as needed.
3-4 times the potency of diazepam. Monitor cardiorespiratory status. Avoid giving IV doses as a
bolus; administer over at least 2-3 minutes and allow an additional 2-4 minutes to evaluate
sedative effect. If rapid relief and symptom control is needed, IV doses of A: 1 mg C: 0.02
mg/kg may be repeated every 3-5 minutes. For severe, refractory delirium, consider A: 10-15
mg/day C: 0.2-0.3 mg/kg/day IV/SC infusion, carefully titrated to effect, under close monitoring.
Pharmacologic Management Guide for Delirium

• Give an initial dose of haloperidol (dose depends on age, weight and severity of agitation).
Newer agents such as olanzapine and risperidone can also be used instead of haloperidol.
• Monitor ECG and electrolytes, especially magnesium and potassium when using neuroleptics.
Monitor for QTc prolongation and cardiac toxicity (torsades de pointes), as well as
extrapyramidal symptoms and other adverse effects.
• Dosing can be repeated every 0.5-4 hours (succeeding dose and frequency also depends on
the age, weight, severity of agitation, and the response to the previous doses).
• A low-dose benzodiazepine can be added to enhance symptom control, as well as decrease
side effects of haloperidol.
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• Symptom control is usually achieved with a total dose of haloperidol (A: 5-30 mg C: 0.05-0.15
mg), and 1-2 doses of a benzodiazepine. Olanzapine (A: 5-20 mg/day C: 0.1-0.3 mg/kg/day),
risperidone (A:1-2 mg/day C: 0.02-0.04 mg/kg/day), or quetiapine (A:12.5-200 mg/day C: 0.02-3
mg/kg/day) have also been used instead if haloperidol. Lower doses are usually needed for
hypoactive delirium.
• Add an anticholinergic, such as benztropine (A: 0.5-1 mg C: 0.01-0.02 mg/kg IV/PO bid-tid) or
diphenhydramine (A: 25 mg C: 0.5 mg/kg IV/PO bid-tid) for extrapyramidal symptoms as
needed. Prophylactic anticholinergic use is controversial; but may be considered.
• After symptom control is achieved, gradually decrease the dose of haloperidol qdaily, to reach a
minimum effective dose. If the cause/s of delirium are irreversible or if delirium recurs then
continue the minimum effective dose indefinitely. If the cause/s of delirium is resolved, the
neuroleptic can be gradually decreased and discontinued.
Intractable Terminal Delirium

More than 50% of terminal delirium can be reversed or improved, while 10-20% would require
sedation. A few cases of terminal delirium become refractory to treatment; for severe intractable
terminal delirium, therapeutic sedation may be considered (see section on Therapeutic Sedation).
The decision to use a deep level of pharmacologically induced sedation in the treatment of agitated
delirium often raises ethical concerns. Consistent with the goals of care, appropriate efforts must
be made to assess the reversibility of delirium, clarify the intent of sedation (the relief of refractory
symptoms), and maintain clear communication with family members and healthcare team members
regarding rationale and process.
Neuroleptic / Antipsychotic Medications
• Neuroleptics or antipsychotic agents are used for delirium, agitation, schizophrenia, bipolar
disorder, mood disorders with psychotic symptoms, and brief psychotic disorder.
• Typical and atypical neuroleptics are distinguished by their binding profiles with dopamine and
serotonin receptors.
Typical Neuroleptics
• The efficacy of typical antipsychotic agents is mainly related to their binding to dopamine D2
receptors.
• Typical antipsychotic agents are divided into high-, moderate- and low-potency categories
based on their level of dopamine receptor antagonism. High-potency agents have the highest
affinity for D2 receptors and are effective at lower doses. Low-potency agents have lower D2
affinity and require larger doses to elicit an effect.
• High Potency Neuroleptics: Haloperidol, Fluphenazine, Trifluoperazine, Thiothixine, Pimozide
• Mid Potency Neuroleptics: Perphenazine, Loxapine, Molindone
• Low Potency Neuroleptics: Chlorpromazine, Thiridazine, Mesoridazine
Atypical Neuroleptics (serotonin-dopamine antagonists, SDAs)

• These agents are distinguished by their antagonism at the serotonin 2A receptor in addition to
D2 blockade. The ratio of serotonin to dopamine blockade is generally high. Atypical
neuroleptics are beginning to replace the typical agents as first line agents because of their
better tolerability and efficacy.
• Atypical Neuroleptics: Olanzapine, Risperidone, Quetiapine, Clozapine, Aripiprazole,
Ziprasidone
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• These agents are also more selective for the mesolimbic dopamine pathway, which is thought
to be a site of neuroleptic action; and less action on the nigrostriatal pathway where
extrapyramidal side effects occur.
• Their therapeutic dose range that allows for neuroleptic effects without inducing significant
extrapyramidal symptoms.
Clozapine is an antagonist of serotonin-2A, alpha-1, dopamine-1, 2, and 4 receptors. Clozapine
also has significant antihistamine and anticholinergic properties, and a side-effect profile similar
to that of the typical low-potency agents.
Aripiprazole is a unique atypical agent; it is a partial dopamine agonist (D2 receptor). It is a
serotonin A receptor antagonist but is also a partial serotonin 1A agonist.
Serotonin-dopamine antagonists include risperidone, olanzapine, ziprasidone, and quetiapine.
• Most agents undergo extensive hepatic metabolism. Typically 50% is excreted via the
enterohepatic circulation and 50% is excreted through the kidneys.
• Most neuroleptics are 85-90% protein bound and highly lipophilic.
• Half-lives range from 5-50 hrs. Steady state plasma levels are reached in 4-10 days.
• In general, the choice of neuroleptic should be based on past history of response and side
effects.
• Atypical agents should be used for patients with tardive dyskinesia (TD) to avoid progression of
neurological impairment. Clozapine is not associated with tardive dyskinesia. Olanzapine,
risperidone, quetiapine, and ziprasidone have reduced risks of tardive dyskinesia.
• No significant differences have been clearly shown in the efficacy of typical and atypical agents
in the treatment of positive symptoms (eg, hallucinations, delusions, disorganization), except for
clozapine which appears to be more effective than typical agents.
Atypical agents may be more effective in the treatment of negative symptoms (eg, affective
flattening, anhedonia, avolition).
Side-effect profiles resulting from antagonism of different receptors pathways include:

• Muscarinic (cholinergic): Dry mouth, constipation, urinary retention, blurred vision,
precipitation of narrow angle glaucoma, ECG changes.
• Alpha-1-adrenergic: Orthostatic hypotension, lightheadedness, tachycardia, sedation and
sexual dysfunction.
• Histamine-1: Sedation, weight gain, fatigue.
• Dopamine-2: Extrapyramidal Parkinsonian symptoms (eg, dystonic reactions, masked facies,
tremor, shuffling gait); hyperprolactinemia (not with clozapine), dystonic reaction, akathisia
(restlessness).
• Serotonin-1C: May mediate weight gain for some atypical agents.
• Non-Specific Side Effects: Include hyperthermia, hypothermia, hepatitis, jaundice,
photosensitivity, lowered seizure threshold, hematologic changes, hepatitis, and rash.
Side Effects Primarily Associated with Typical Neuroleptics

• Low-potency typical antipsychotic agents and clozapine have more troublesome side effects
than high-potency agents because of greater antagonism of cholinergic, adrenergic and
histaminergic receptors.
• High-potency typical agents have more frequent extrapyramidal side effects because of potent
antagonism of dopamine receptors.
• The atypical agents generally have much lower antagonism of cholinergic, adrenergic and
histaminergic receptors.
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Side Effects of Atypical Neuroleptics
• Atypical neuroleptics are associated with weight gain, type II diabetes and hyperlipidemia.
There is some risk of hyperglycemia and diabetes; and there have been reports of diabetic
ketoacidosis (DKA).
Specific Adverse Reactions to Neuroleptic Agents

• Neuroleptic Malignant Syndrome (NMS): infrequent side effect with a possible fatal outcome.
It is characterized by elevated temperature, autonomic instability, delirium, and rigid muscle
tone. Risk factors for neuroleptic malignant syndrome include dehydration, heat exhaustion, and
poor nutrition.
• Agranulocytosis is associated with clozapine (1-2% incidence). It should be discontinued if the
WBC drops below 3,000 or 50% of the patient's normal level, or if the absolute granulocyte
count drops below 1,500.
• Tardive Dyskinesia (TD): a long-term neurological impairment, occurring in patients on chronic
typical neuroleptics (> 2 months). TDs may not resolve after discontinuation of the neuroleptic
and may be permanent. TDs are characterized by involuntary jerking movements of the face,
trunk, neck or extremities. Risk for TD increases by 1% with each year of typical neuroleptic
treatment. Atypical agents have minimal risk for TD. Treatment may include the following:
Quantify the degree of neurological dysfunction with the abnormal involuntary movement scale;
Reduce or stop the drug if possible; If continued neuroleptic treatment is needed, change to an
atypical agent.
• Dystonic reactions are painful, acute involuntary muscle spasms. They are common side
effects of typical antipsychotic agents. Dystonic reactions commonly involve the extremities,
neck (torticollis), and ocular muscles (oculogyric crisis). The muscle contractions are not life-
threatening unless they involve airway passages (eg, larynx) and lead to airway obstruction.
Treatment may include:
Antiparkinsonian Agent
Benztropine (A:1-2 mg C: 0.02 mg/kg IM/IV)
Diphenhydramine (A: 50 mg C: 1 mg/kg IM/IV)
Consider change of antipsychotic. Prophylaxis against further episodes of dystonia is
accomplished with an oral anticholinergic agent such as benztropine, (A: 2 mg C: 0.02-0.04
mg/kg PO bid) or Diphenhydramine (A: 25 mg C: 0.5 mg/kg PO bid) for 1-2 months. If dystonic
reactions occur after discontinuing the anticholinergic agent, longer prophylactic treatment
should be provided (eg, 3-6 months).
• Drug-induced parkinsonian symptoms include bradykinesia, tremor, cogwheel rigidity,
masked facies, and shuffling gait. Treatments include: Decreasing antipsychotic dose; Use of
anticholinergic drug (eg, benztropine); Changing to lower-potency or atypical agent; Tremor can
be treated with propranolol, (A: 10-40 mg C: 0.2-0.8 mg/kg PO bid to qid).
• Akathisia is characterized by an intense sense of restlessness or anxiety. Treatments include:
Decreasing antipsychotic dose; Trial of anticholinergic agent (eg, benztropine A: 2 mg C: 0.04
mg/kg PO bid); Trial of beta-adrenergic antagonist such as propranolol (A: 10-40 mg C: 0.2-0.8
mg/kg PO bid to qid); Consider changing to lower-potency or atypical agent; Trial of
benzodiazepine, such as clonazepam, (A: 0.5 mg C: 0.01 mg/kg PO bid).
• Cardiac effects may also occur, such as QTc prolongation and cardiac toxicity (torsades de
pointes). Monitor the ECG and QTc interval; and electrolytes, including magnesium and
potassium.
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Overdose
• Death is uncommon with overdose. Risk of death is increased with use of alcohol or other CNS
depressants.
• Mesoridazine, pimozide and thioridazine are associated with a high risk of death because of
heart block and ventricular tachycardia.
• CNS depression, hypotension, seizures, fever, ECG changes, hypothermia, and hyperthermia
may occur.
• Treatment may include gastric lavage, cathartics, benzodiazepines for seizure, and
management of hypotension.
Diarrhea
Diarrhea involves an abnormal looseness of the stools (increased liquidity or decreased

consistency). It is commonly defined as more than 3—4 loose stools per day. Diarrhea can occur in
as many as 10% of patients. It can be a debilitating and embarrassing problem. Diarrhea increases
the risk for dehydration, electrolyte imbalance, skin breakdown, and fatigue.
Causes
• A common cause in cancer patients is laxative overdose, typically seen when the
management of constipation is suddenly made more aggressive
• Cancer related – Carcinoid syndrome, colon cancer, lymphoma, thyroid medullary carcinoma,
pancreatic cancer particularly islet cell tumors (Zollinger-Ellison syndrome), pheochromocytoma
• Medications - Antibiotics, magnesium-containing antacids, antihypertensives, colchicine,
digoxin, iron, lactulose, laxatives, methyldopa, metoclopramide, misoprostol, potassium
supplements, propanolol, theophylline; Chemotherapeutic agents
• Diet - Alcohol, milk, and dairy products (particularly if lactose intolerance); Caffeine-containing
products (coffee, tea, chocolate), specific fruit juices (prune juice, unfiltered apple juice,
sauerkraut juice); High-fiber foods (raw fruits and vegetables, nuts, seeds, whole-grain
products, dried legumes); high-fat foods (deep fat–fried foods, high-fat containing foods);
Lactulose intolerance or food allergies; Sorbitol-containing foods (candy and chewing gum); hot
and spicy foods; gas-forming foods and beverages (dried legumes, melons, carbonated drinks)
• Infection - Clostridium difficile, Clostridium perfringens, Bacillus cereus, Giardia lamblia,
Cryptosporidium, Salmonella, Shigella, Campylobacter, Rotavirus, etc
• Concurrent medical illness - Diabetes, hyperthyroidism, inflammatory bowel disease (Crohn’s
disease, diverticulitis, gastroenteritis, HIV disease (e.g., bacterial, protozoal, viral pathogens;
including Cryptosporidia, Giardia lambila, E. histolytica, and Cytomegalovirus), ulcerative
colitis), obstruction (tumor-related)
• Prior surgery -, Cholecystectomy, esophagogastrectomy, Gastrectomy,
pancreaticoduodenectomy (Whipple procedure), Intestinal resection (malabsorption due to short
bowel syndrome), Vagotomy
• Other causes include bowel obstruction, fecal impaction, malabsorption, pancreatic
insufficiency, infectious agents including Clostridium Difficile infection, radiotherapy and
radiation enteritis, hemorrhage, Celiac plexus block, stress
• Keep in mind that patients at the end-of-life are also at risk for developing the same diarrheal
illnesses that occur everyday in the general population (viral/bacterial gastroenteritis, adverse
effects of medications).
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Evaluation
The history should include frequency of bowel movements during the past 24 hours, description
and quantity and quality of stool (including consistency: well-formed, formed, and semiformed to
loose, very loose, and liquid), timing of movements in relation to ingestion of food or liquids, the
time course and symptom development, symptoms that might indicate hemodynamic compromise
or the underlying etiology (dizziness, orthostatic symptoms, weight loss, decreased urination,
lethargy, cramping, abdominal pain, nausea, vomiting, fever, and rectal bleeding, etc); medications
(including laxatives), and dietary intake. Uncomplicated symptoms include grade 1 or 2 diarrhea
with no other signs or symptoms; it responds to more conservative measures. Complicated
symptoms include grade 3 or 4; or grade 1 or 2 diarrhea with any one of the following risk factors:
moderate to severe cramping, grade 2 or higher nausea/vomiting (see table below), decreased
performance status, fever, sepsis, neutropenia, frank bleeding, or dehydration. Grade 3 or 4
diarrhea is also classified as complicated.
Assess vital signs, skin turgor, oral mucosa, to assess hemodynamic status and dehydration.
Abdominal rebound tenderness, guarding, bowel sounds. A rectal exam can rule out fecal
impaction but done carefully in neutropenic or thrombocytopenic patients. Stool cultures for
bacterial, fungal, and viral pathogens. A complete chemistry panel, CBC, Urinalysis with specific
gravity. In some cases, radiographic studies may identify ileus, obstruction, or other abnormalities;
and endoscopy may also be needed.
NCI Criteria for Grading Severity of Diarrhea

Toxicity 0 1 2 3 4
Patients None Increase of <4 Increase of 4–6 Increase of ≥7 >10 stools/day
without a stools/day over stools/day or nocturnal stools/day
colostomy pretreatment stools
None None Moderate cramping, not Severe cramping and Grossly bloody
interfering with normal incontinence, diarrhea and need
activity interfering with daily for parenteral
activities support
Patients with a None Mild increase in Moderate increase in Severe increase in Physiological
colostomy loose, watery loose, watery colostomy loose, watery consequences
colostomy output output compared with colostomy output requiring intensive
compared with pretreatment, but not compared with care; hemodynamic
pretreatment interfering with normal pretreatment, collapse
activity interfering with normal
activity
For patients None >500 mL to ≤1,000 >1,000 mL to ≤1,500 >1,500 mL of Severe abdominal
undergoing mL of diarrhea/day mL of diarrhea/day diarrhea/day pain with or without
bone marrow ileus
transplant
(BMT)
For children None >5 mL/kg to ≤10 >10 mL/kg to ≤15 >15 mL/kg of Severe abdominal
undergoing mL/kg of mL/kg of diarrhea/day diarrhea/day pain with or without
BMT diarrhea/day ileus
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Management
Specific Management
Whenever possible, treat underlying causes.
• Infectious Diarrhea: Treat enteric infections if indicated.
• Laxative Overdose: Discontinue until diarrhea resolves, then lower dose of laxatives or use
only as needed.
• Radiation induced diarrhea: Opioids relieve both diarrhea and abdominal pain.
NSAIDs or Aspirin A: 160-325 mg C: 15-20 mg/kg/dose PO qid- if there are no contraindications
or risks (gastritis, ulcer, bleeding, kidney dysfunction)
Cholestyramire, bile sequestering agent. A: 4 g C: 80 mg/kg/dose PO tid
Consider bulk forming agents, eg psyllium. Topical steroids if with proctitis. Antispasmodics.
• Chemotherapy induced diarrhea: (eg 5FU enteritis): Opioids relieve both diarrhea and
abdominal pain. For severe cases, consider octreotide (A: 100 mcg C: 2 mcg/kg SC bid).
• Post-gastrectomy dumping syndrome: Opioids relieve both diarrhea and abdominal pain.
For severe cases, consider octreotide (A: 100 mcg C: 2 mcg/kg SC bid-tid, or by continuous
IV/SC infusion).
• Fat malabsorption, Pancreatic Insufficiency: Pancreatic enzyme replacement (lipase,
amylase, protease): Initial dose based on lipase: <1yr= 2000 units with meals, 1-6yrs= 4000-
8000 units with meals and 4000 units with snacks, >6yrs= 4000-12000 units with meals and
snacks. The dose should be adjusted to reflect the actual digestive requirements of each
patient. Also consider a combination of an H2 blocker (eg famotidine) to increase fat absorption,
and loperamide to decrease peristalsis and increase water absorption.
• lleal resection: Cholestyramine A: 4-12 g C: 80-160 mg/kg/dose PO tid
• Carcinoid syndrome: Cyproheptadine A: 4 mg C: 0.1 mg/kg/dose or 2-6 yrs= 2 mg, >6 yrs= 4
mg, PO bid-tid. Octreotide Initially 50 mcg SC bid, titrate up to 100-600 mcg/d in 2-4 divided
doses, or by continuous SC/IV infusion.
• Clostridium difficile colitis: metronidazole or vancomycin orally
• Ulcerative Colitis: Mesalamine
• Intestinal obstruction (see section on Bowel Obstruction)

Encourage patients to increase clear liquid intake. Oral rehydratiion solutions such as: 2 g salt +
50g sugar in 1 li water; and other commercial preparations. Rice water (water used for cooking
rice) can hydrate as well as slow peristalsis. Consider IV hydration for severe dehydration.
Discontinue laxatives and promotility agents (e.g., metoclopramide). Dietary modifications are
commonly implemented to stop or lessen the severity of cancer treatment-related diarrhea.
Consider small, frequent meals and avoid lactose-containing food (milk and dairy products), spicy
foods, alcohol, caffeine-containing foods and beverages, certain fruit juices, gas-forming foods and
beverages, high-fiber foods, and high-fat foods. For mild cases, the BRAT (bananas, rice, apples,
toast) diet may reduce the frequency of stools. Probiotic functional foods (beneficial live
microorganisms) to modify gut microflora has been used. Protect the perianal area with products
such as topical zinc oxide or cortisone preparations. Antispasmodics as needed.
Pharmacotherapy aims to inhibit of intestinal motility, reduce secretions, and promote absorption.
Absorbents
(Psyllium A:1-2 teaspoons C: ½-1 teaspoon PO bid-tid; Methylcellulose A: 1 tablespoon C: ½
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tablespoon PO qd-tid) Methylcellulose and pectin form a gelatinous mass that gives density to fecal
material. Onset: 24-48 hours. Use with care-may cause impaction especially if poorly hydrated; it is
generally not used in the elderly or the very ill who are prone to dehydration and impaction. May
inhibit absorption of other medications and oral antidiarrheals.May not be well tolerated due to the
large volume required. May cause abdominal discomfort and bloating. Kaolin, clays, and activated
charcoals have been used.
Opioids
Codeine A: 10-60 mg C: 0.2-1 mg/kg q 4 hours; Loperamide A: 4 mg initial dose, then 2 mg after
each loose stool up to 12-16 mg/day. C: Initial dose 2-6 yrs= 1 mg tid, 6-8 yrs= 2 mg bid, 8-12 yrs=
2 mg tid; then 0.1 mg/kg/doses after each loose stool but not to exceed initial doses; Diphenoxylate
A: 5 mg C: 0.08-0.1 mg/kg PO tid-qid. High doses can cause antichohinergic side-effects) Controls
pain, and pain, esp codeine and stronger opioids. Bind to receptors in the GI tract and reduce
peristalsis and transit time in the gut and promote fecal continence. Potent anti-diarrheal agents.
Loperamide is the most common opioid used, although other opioids can also be effective. It only
weakly crosses the blood-brain barrier, and its side effect profile is more favorable than other
opioids (e.g. codeine or diphenoxylate). Loperamide may be less effective in patients with grade 3
or 4 diarrhea. Loperamide should be used with caution if an infectious diarrhea is suspected.
Mucosal prostaglandin inhibitors
Also referred to as antisecretory agents - include aspirin, bismuth subsalicylate, corticosteroids,
and octreotide. Aspirin is used for radiation-induced diarrhea. Bismuth subsalicylate may also have
direct antimicrobial effects; and is also used as prophylaxis for traveler’s diarrhea. Large doses can
produce toxic salicylate levels. It can be added for increased symptomatic control against
organisms such as enterotoxigenic E. Coli. Corticosteroids reduce edema in obstruction and
radiation colitis and hormonally mediated diarrhea of some endocrine tumors.
Complicated Diarrhea
Usually needs to be managed with IV fluids and antibiotics. Treat underlying cause/s if possible.For
immunocompromised and debilitated patients, and those who progress to grade 3 or 4 diarrhea
while taking loperamide, consider checking stools for stool ( blood, fecal leukocytes, C difficile,
Salmonella, E coli, Campylobacter, and infectious colitis), CBC, and electrolytes.
Complicated Non-infectious and Chemotherapy-Induced Diarrhea

For diarrhea that is low grade (1 and 2), consider loperamide q 2-4 hrs for the first day. Add
octreotide if not responsive to adequate doses of loperamide.
For severe diarrhea (grade 3 or 4), consider octreotide as first-line therapy. Parenteral hydration,
nutrition and electrolyte supplementation may be needed.
Octreotide is a somatostatin analog that is useful for complicated non-infectious, and
chemotherapy-induced diarrhea. Dose and administration: (A: 100 to 150 mcg C: 2 mcg/kg SC TID
or A: 25 to 50 mcg/hour C: 0.5 mg/kg/hour, IV titrate by A: 25-50 mcg C: 0.5 mg/kg increments to
500 mcg TID). It is continued until the patient is diarrhea free for 24 hours.
Dysphagia
Dysphagia is difficulty in swallowing; whle odynophagia is pain or discomfort on swallowing. Up to

25% of palliative care patients may experience dyphagia and/or odynophagia. For malignancies,
dysphagia is commonly associated with: head and neck cancer, esophageal and gastric cancer,
and cancers in the mediastinal or pharyngeal areas (eg lung cancer, lymphoma).
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Common Causes
Causes of Mechanical Obstruction: Start with dysphagia for solids, followed later by dysphagia for
liquids. More than half of patients may be able to localize the site of obstruction (eg sensation of
food “getting stuck”). These include: oral or pharyngeal tumors, intraluminal esophageal or gastric
tumors, external compression due to adjacent tumors, and esophageal strictures (eg due to
radiotherapy).
Causes of Neuromuscular Dysfunction: May start with dysphagia for both solids and liquids. These
include injury to or cancer invasion of the vagal nerve, sympathetic chain, intraluminal esophageal
nerve plexus, cranial nerves (V, VII, IX, X, XII), cerebral metastases and bulbar palsies. Some
drugs may cause dystonic reactions- eg metoclopramide, haloperidol, and phenothiazines.
Causes of Odynophagia: Pain or discomfort on swallowing may be due to: reflux esophagitis,
mucosistis, oral candidiasis, and other painful oro-pharyngeal (pharyngeal pain on swallowing) or
esophageal lesions (retrosternal or epigastric pain).
Severe Weakness and Debility: During the final stages of illness, patients may experience
dysphagia due to severe weakness and/or general debility.
Signs: dehydration and weight loss. Total time taken from the first movement of the tongue to the
last movement of the larynx (the oro-pharyngeal transit time) is usually less than 1 second
withliquids- times longer than this may be abnormal. Patients usually refuse all food if the transit
time is longer than 10 seconds.
Symptoms: food refusal and pain on eating may indicate a problem with swallowing. Aspiration
leading to repeated pulmonary infections can occur. Patients can sense the position of an
obstruction and this information is important in separating out swallowing causes in the mouth and
pharynx from those in the esophagus.
Preparation (oral) phase problems:

Signs: leakage of food or liquid from the mouth, food collecting between the gums and the cheek,
reduced or poorly co-ordinated tongue movements preventing food from forming a bolus and
moving food from the front to the back of the mouth, prolonged chewing due to pain in the mouth,
reduced sensation or muscular weakness.
Symptoms: difficulty moving food or liquids to the back of the tongue or pain in the mouth on
chewing.
Swallowing and pharyngeal phase problems:
Signs: delayed swallowing phase, choking and coughing before, during or after the swallow,
‘gurgly’ quality to the voice after drinking due to material entering the larynx, nasal regurgitation or
copious sputum.
Symptoms: a sensation of food ‘sticking’ at the mouth or throat, feeling of choking or pain in the
throat on swallowing.
Esophageal phase problems:
Signs: usually none unless aspiration causes repeated chest infections.
Symptoms: sensation of food sticking in the chest or epigastric area, worse with solid food (the
level of the sensation depends on the site of the blockage), pain on swallowing or heartburn due to
reflux of stomach contents into the esophagus.
Management
• Identify and manage the underlying cause/s. Manage oral problems (see section on oral
problems), gastroesophageal reflux/ sophagitis (see section on gerd), dystonic drug reactions
(change medication, use diphenhydramine or benztropine), nerve injury (trial of
192
dexamethasone, chemo/radiotherapy if appropriate), mechanical obstruction (trial of
dexamethasone, surgical/ chemo/ radiotherapy if appropriate), and other existing problems.
Management of dysphagia requires special emphasis on education and training to give families
the confidence to provide comfort care.
• Simple measures to help with swallowing may include: sitting upright/ elevating the head during
and after eating/ feeding, giving/ taking smaller amounts of food slowly, cutting/ dividing food
into small pieces, using the best consistency for the patient (eg puree, liquid, paste), avoiding
“sticky” food (eg soft bread, “sticky” pastries), chewing adequately and swallowing completely
before giving/ taking another portion of food, frequent small feedings, and using a straw/ a
nearly full glass/ or other measures so that there is no need to tilt the head back to drink.
• Medications may need to be taken in folrms that are easy to swallow (eg crushed, liquid
formulations).
• Prevent aspiration by teaching the patient/family compensatory swallowing strategies, how to
prepare modified food/liquid consistencies, and monitor for aspiration symptoms. As the
patient's status changes, families are taught to minimize risks by adjusting compensatory
strategies and diet textures. Options include eating and drinking orally (with feeding assistance),
tube feeding, a combination of the two, or withholding or withdrawing hydration and nutrition.
Other considerations may include total parenteral nutrition or a pre-determined timed-trial (e.g.,
a specific number of days/weeks) for tube feedings or oral diets.
• The plan must consider the patient's wishes regardless of potential outcome. For example, if
the patient chooses to risk aspiration by taking small sips of thin liquids or eating orally, the
patient should be supported in the decision. Always be available to the patient and family to
answer questions and to provide counseling and support. Determine and document patient and
family statements and preferences- eg "do not resuscitate," "no code," or "no tube feeding."
Specific orders may also be written, such as, "Patient was advised and understands the risk of
aspiration. Per patient wishes, the patient is allowed to take an oral diet." Some medical
facilities may require an Informed Consent.
Dyspepsia and Gastroesophageal Reflux
Dyspepsia and gastroesophageal reflux occur frequently. Dyspepsia refers to paion or discomfort
involving the upper GI tract such as epigastric or retrosternal pain or discomfort, and heartburns.
Dyspepsia and reflux-related symptoms may include: gastrointestinal symptoms (anorexia, nausea
and vomiting – especially during or after eating, dysphagia, weight loss, failure to thrive,
hematemesis, melena); respiratory symptoms (increased secretions, aspiration, recurrent
respiratory tract infections, cough, bronchospasm and wheezing, sensation of gagging or choking);
chest or epigastric pain and discomfort especially during or after eating, and when lying down.
Common Causes: gastroesophageal reflux/ reflux esophagitis, poor gastric or esophageal motility
(adverse effect of drugs, nerve injury), gastritis and peptic ulcer disease (H. Pylori, stress, NSAIDs,
corticosteroids), decreased stomach capacity (external pressure from tumor, hepatomegaly,
ascites; gastrectomy- “small stomach syndrome”; aerophagia (air swallowing- eg due to anxiety)
Evaluation
Empiric treatment may be appropriate. But monitor for worsening symptoms, and sympstoms that
suggest a complicated course, such as bleeding, severe dysphagia, weight loss, choking, and
193
severe pain. Tests may include Hb, stool occult blood, upper GI endoscopy, tests for H pylori and
pH monitoring.
Management
General Management
• Consider small, frequent feedings.
• Avoid alcohol and fatty meals; pepper, chocolate, mint, coffee, carbonated drinks, onions, and
other spicy or acidic food or drink.
• Avoid lying down 3 hr after eating. Elevate the head of the bed.
• Diet, exercise, and weight loss, if overweight.
• Avoid tight fitting clothes.
• Check medication list. Decrease the dose or change medications that may exacerbate
symptoms. These include: medications that decrease lower esophageal sphincter tone (eg
benzodiazepines, anticholinergics, calcium channel blockers, theophylline, and caffeine);
medications that cause mucosal irritation (eg NSAIDs); medications that decrease motility (eg
opioids, anticholinergics).
• Stop smoking, carbonated, and alcoholic drinks.
• Drink at least full glass of water when taking medications.
• Antacids
Al, Mg hydroxide (Maalox)
• Antacids with Simethicone/ Activated Charcoal
• Proton Pump Inhibitors
Omeprazole A: 20-40 mg C: 0.75 mg/kg, PO, qd
Esomeprazole A: 40 mg C: 0.75 mg/kg, PO/IV, qd
Lansoprazole A: 30-60 mg C: 0.75-1 mg/kg, PO, qd
Pantoprazole A: 40 mg C: 0.75 mg/kg, PO, qd
Rabeprazole A: 20 mg C: 0.4 mg/kg, PO, qd
• H2 Blockers
Ranitidine A: 150 mg C: 1.25-2.5 mg/kg, PO, bid; A: 50 mg C: 0.75-1 mg/kg, IV/IM, q6-8hr
Famotidine A:10-20 mg C:0.2-0.4 mg PO/IV bid; more potent and longer duration of action than
ranitidine
• Prokinetic Agents
Metoclopramide A: 5-10 mg C: 0.1 mg/kg, PO/IV/IM, tid-qid
Domperidone A: 5-10 mg C: 0.1 mg/kg, PO, qd-tid
• H. pylori Treatment
Consider H. pylori treatment if appropriate. Modify the treatment regimen if needed to decrease
adverse effects.
Refractory Reflux
If significant discomfort, distress, vomiting, and weight loss continues despite optimal medications.
Endoscopic evaluation can be done. Surgical management of reflux may be needed. If the
patientrequires chronic tube feeding, then a gastrostomy tube may be helpful.
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Dyspnea
Dyspnea is the unpleasant sensation of difficulty of breathing. It is a subjective sensation that can
be frightening, and can be present even if the breathing appears normal. 50% of palliative care
patients will have some exertional dyspnea, and this increases to 70-80% of patients in the last six
weeks of life. 5% of palliative care patients have dyspnea at rest. Of those patients with dyspnea,
75% will have some lung involvement.
Causes
(Often multifactorial and the underscored are the most common in palliative care.)
Airway obstruction:
Tracheal: tumor of larynx, thyroid, mediastinum or bronchus, tracheo-oesophageal fistula
Bronchial: tumor, chronic bronchitis, acute infection, bronchitis, bronchospasm: bronchitis,
asthma, carcinoid syndrome
Reduction in functional lung tissue:
surgical resection: lobectomy, pneumonectomy
tumour: atelectasis, lymphangitis, multiple metastases
fibrosis: pre-existing, radiation, chemotherapy
pleural effusion , pneumothorax, infection, hemorrhage, pulmonary embolism, chronic emphysema
Impaired ventilatory movement:
chest wall weakness, motor impairment, general debility, chest wall pain,
elevated diaphragm: ascites, hepatomegaly, phrenic nerve lesion
Cardiovascular:
congestive cardiac failure, cardiomyopathy, cardiac arrhythmia, pericardial effusion, constrictive
pericarditis, SVC obstruction, shock, haemorrhage, septicaemia
Anemia
Anxiety
Evaluation
Dyspnea is multidimentional. Objective signs like tachypnea or use of accessory breathing muscles
may not match the perception of dyspnea and the functional impairment it causes. Psychosocial
issues affect the experience of dyspnea. Pulmonary function tests play a limited role in determining
symptom severity. Visual analog and numerical rating scales, and tools such as the Modified Borg
Scale may be useful. However, these tools are unidimensional and do not account for the relative
contribution of different factors.
A comprehensive history and examination are important. Review the timing of onset (recent
sudden deterioration may indicate a reversible cause, eg. infection or pleural effusion), symptom
characteristics including severity (e.g. “how far can you walk”, “can you walk upstairs”, “how hard is
it to shower yourself”), associated symptoms, precipitating and relieving events or activities, impact
on functional status, responses to medications, history of cardiopulmonary problems, etc. Asses for
anxiety, many patients will experience feelings ranging from anxiety to sheer terror with dyspnea
(“It feels like I’m choking to death”, “like I’m suffocating”, “I’m gasping my last breath”).
Diagnostic tests that may help to determine the etiology of dyspnea include chest imaging by
radiography, computer-assisted tomography, complete blood counts, oxygen saturation at rest and
with exercise and, to a much lesser extent, pulmonary function tests.
195
Modified BORG Scale
Scale Severity Scale Severity
0 No Breathlessness At All 5 Severe Breathlessness
0.5 Very Very Slight (Just Noticeable) 6
1 Very Slight 7 Very Severe Breathlessness
2 Slight Breathlessness 8
3 Moderate 9 Very Very Severe (Almost Maximum)
4 Some What Severe 10 Maximum
Investigations
It may or may not be appropriate to pursue intensive investigations and very much depends on the
severity of symptoms and the prognosis of the patient. Conventional evaluation generally included
a clinical history, physical examination, electrocardiography, pulse oximetry, chest films, and blood
tests including Hb. Measuring oxygen saturation, by a simple non-invasive pulse oximetry, can be
useful in determining whether a patient is hypoxic. In the terminally ill, the usefulness of arterial
blood gasses may only be limited. These are relatively non-invasive and worth considering if there
is an acute deterioration. Maximal inspiratory pressure (MIP) measures the strength of respiratory
muscles and may be helpful especially if no apparent cause can be found. BNP is a polypeptide
secreted by cardiac myocytes in response to volume expansion and pressure overload. Heart
failure is an unlikely cause of dyspnea if the BNP level is below 100 pg/mL; it is likely if the BNP is
above 500 pg/mL. If between 100 and 500 pg/mL, use clinical judgment and further tests, if
necessary, to rule out COPD, CHF/left ventricular dysfunction, and other conditions that can cause
acute dyspnea. Many patients are at risk for pulmonary embolism- perform appropriate testing and
evaluation if indicated.
Management
Specific Management
Treatment again must be appropriate to the stage of the patient’s disease and prognosis. Specific
treatments are beyond the scope of this article but whether a specific treatment, eg. radiotherapy,
is appropriate or not, the following measures will certainly help the patient’s distress.
Common Causes (mnemonic “BREATH AIR”)
Bronchospasm. If present, consider inhaled adrenergic agents (eg albuterol/salbutamol), anti-
cholinergics (eg ipatropium), theophylline, and/or oral/inhaled steroids; if trial of bronchodilators fail
to relieve dyspnea, consider lowering doses of theophylline and adrenergic agents to reduce any
tremor and anxiety, which often exacerbate dyspnea.
Rales. If volume overload is present, reduce artificial feeding, stop or decrease intravenous fluids.
Diuretics may be needed. Cardiac failure requires diuretics (eg furosemide) and other cardiac
drugs (eg ACE inhibitors or ARBs). Morphine may also help in CHF. If pneumonia is present,
decide whether an antibiotic will rehabilitate the patient or just prolong the dying process. Patient
and family participation in this decision is essential.
Effusions. Thoracentesis can be effective; if the effusion recurs and the patient is ambulatory,
consider pleurodesis, or indwelling drainage catheter if pleurodesis is not possible. If the patient is
close to death, palliate the dyspnea with opioids and benzodiazepines. Gross ascites causing
dypnea may need diuretics, and/or paracentesis. Diuretic regimen for pleural effusion and/or
ascites (consider furosemide + spironolactone).
Airway obstruction. Tumor obstruction (upper airways, bronchus, or superior vena cava):
Radiation therapy, hormone therapy, or chemotherapy for sensitive tumors. Radiotherapy can
relieve most cases of tumor obstruction. Consider a trial of steroids, eg dexamethasone.
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Bronchoscopically guided cauterization or laser ablation of intraluminal masses in large airways if
appropriate. Stenting of large airways with expandable stents when the obstruction is extraluminal.
Clean tracheostomy appliances regularly. If aspiration of food is likely, purée solids and thicken
liquids with cornstarch or commercial preparations. Instruct the family on positioning the patient
during feeding and suctioning if necessary.
Thick secretions. If the cough reflex is still strong, loosen secretions with nebulized saline and an
expectorant as needed. Chest pulmophysiotherapy.If the cough is weak, dry secretions with
hyoscyamine or transderm scopolamine, or add glycopyrrolate. These drugs also reduce the so-
called “death rattle.” (See section on Respiratory Secretions).
Hemoglobin low. A blood transfusion may improve energy and reduce dyspnea for a few weeks.
Although costly, consider erythropoietin for patients likely to improve to a higher functional level.
More often, hemorrhage or marrow failure are part of the dying process and are best palliated with
opioids, benzodiazepines, and other symptomatic treatments.
Anxiety. Dyspnea exacerbates normal fears and anxiety. The following can be tried: sitting up
comfortably, using a bedside fan, listening to calming music, practicing relaxation techniques,
counseling, and the calming presence of a physician. Medications: first use a short- acting opioid
(e.g. morphine), then try a short-acting benzodiazepine if needed (lorazepam, or alprazolam). If the
patient is already being treated with opioids, titrate the opioid dose by 25% above the existing
dose. If the opioid dose is limited by drowsiness, reduce the benzodiazepine and increase the
opioid. (See section on Anxiety).
Interpersonal issues. Social and financial problems contribute to dyspnea. Counseling may bring
relief. Family and/or individual therapy and counseling may be needed.
Religious concerns. Although faith or an experience of the transcendent can bring profound
comfort, spiritual or existential problems can precipitate dyspnea and/or exacerbate its symptoms.
Take time to listen with full attention and presence. Regular spiritual assessment and appropriate
management are important. (See section on Spiritual Issues)
Treatment is based primarily on oxygen, medications, and general measures of support.

• Provide a calm environment.
• Reduce the need for exertion and arrange for readily available help.
• Reposition, usually to a more upright position or with the compromised lung down.
• Improve air circulation(provide a draft- use fans, open windows; adjust humidity with
humidifier or air conditioner; try cold air directed across the cheek).
• Address anxiety and provide reassurance. Consider counseling and psychotherapy.
— Discuss need for companionship and spiritual support. Isolation and spiritual concerns can
exacerbate symptoms. Discuss the meaning of symptoms and other patient/family concerns.
— Anticipate and rehearse with the patient/family their responses when symptoms worsen. Patient
should not be left alone.
— Identity situational components (i.e., what triggers the dyspnea attack?).
— Teach behavioral interventions such as relaxation and hypnosis, lifestyle modification.
• Discuss any patient/family/staff concerns about using opioids to relieve dyspnea.
• Consider breathing exercises.
• Consider pursed-lip breathing, diaphragmatic breathing and muscle training.
• Consider complementary therapy (massage, acupuncture, self-hypnosis, meditation,
relaxation training, biofeedback techniques etc).
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Opioid Therapy
Opioids are effective for dyspnea. If used appropriately, opioids do not hasten death; instead, they
reduce physical and psychological distress and exhaustion, and early use improves quality of life.
Significant respiratory depression depends largely on the history of previous exposure to opioids
and the rate of increase of the opioid dose. Opioids for dyspnea are given similarly to, and usually
coinciding with, opioid therapy for pain. Nebulized opioid administration is sometimes used. Opioid
receptors are located on sensory nerve endings in the airways; however, nebulization is an
inefficient mode of administration. Systemic bioavailability of nebulized morphine is poor and erratic
(4% to 8%). The role of this mode of treatment is still being studied.
Mild Dyspnea in Patients Taking No Pain Medications
Begin with low doses of an opioid such as hydrocodone or acetaminophen with codeine. Children
and the elderly may require lower doses.
• Hydrocodone A: 5 mg C:0.1 mg/kg q 4 hours and q 2 hours pm
• Acetaminophen with codeine. Initial doses for codeine A: 10-30 mg C: <6 yrs= 2.5-5 mg, 6-12
yrs= 5-10 mg, >12 yrs= 10-15 mg q 4 hours, and q 2 hours prn
• Morphine (low dose) A: 2-5 mg C: 0.05-0.1 mg/kg/dose q 4 hours prn
• Use pre-emptively where possible, e.g. 15-30 minutes before an activity that causes dyspnea
Severe Dyspnea or Dyspnea Being Treated With Opiolds
Consider switching to a more potent oral opioid such as
• Oxycodone A: 5-10 mg C: 0.05-0.15 mg/kg/dose PO q 4-6 hours prn
• Morphine A: 10-30 mg C: 0.2-0.5 mg/kg/dose PO q 4 hours prn
• Hydromorphone A: 0.5—2 rng PO q 4 hours prn
Severe Dyspnea in Patients Already Being Treated with Opioids Such as Oxycodone,
Morphine, or Hydromorphone, and those with High Levels of Anxiety
Consider increasing the above doses by up to 30-50% q 4—12 hours until the patient experiences
relief. Treatment in an inpatient hospice/palliative care setting may be appropriate because close
monitoring is essential. In addition, administration of escalating doses of opioids and midazolam
may be required. Dyspnea may be multifactorial; assess and manage various factors.
Oxygen
Patients who are hypoxic on room air may benefit from oxygen therapy, probably through a
decrease in the chemoreceptor input to the respiratory center and the brain cortex. The role of
oxygen for nonhypoxic dyspnea is less clear. Non-hypoxic patients may truly feel some benefit, but
be careful not to cause psychological dependence. Use nasal prongs if possible. Oxygen masks
may isolate the patient, they can be frightening, and it is difficult to eat, drink, and talk with them on.
Other Medications
Other options include methylxanthines (eg theophylline), sedatives, tranquilizers, bronchodilators,
and steroids. The role of methylxanthines is still being studied. Chlorpromazine and promethazine
may decrease dyspnea without affecting ventilation. Benzodiazepines are usually beneficial. A
combination of two scheduled medications (morphine and midazolam) and one as needed
(morphine) for episodes of breakthrough dyspnea is effective. Benzodiazepines are most effective
for dyspnea with anxiety.
Benzodiazepines and Anxiety Management
Provide counseling and other nonpharmacologic interventions.
Consider anxiolytics.
For chronic, recurrent anxiety episodes, use:
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Diazepam A: 2-10 mg. C: 0.05-0.2 mg/kg and max of 10 mg/total daily dose. PO/SC/SL/PR/IV qd-
qid; Start with a low dose (eg A: 2-5 mg C: 0.1-0.05 mg/kg qhs) and gradually increase as needed
Lorazepam A: 0.5—2 mg. C: 0.02-0.05 mg/kg max 2 mg/dose. PO/SL/PR/IM/IV (dilute if IV) qd-qid;
Start with a low dose (eg A: 0.5-1 mg C: 0.01-0.02 mg/kg qhs) and gradually increase as needed.
For an acute episode of anxiety/ respiratory panic/ panic episode, use:
One to two doses of lorazepam or diazepam (dose as above); or
Midazolam A: 5 mg/dose C: 0.1 mg/kg/dose IM/slow IV
Bronchodilators
May be worth a trial even if there is no wheeze, if bronchospasm cannot be entirely ruled out.
Salbutamol A: 5-10 mg C: < 5yr old=2.5 mg, >5yr old=5 mg, via nebulizer, q4-8hrs.
Ipratropium A: 500 mcg C: <1yr old=125 mcg, 1-5yr old=250 mcg, >5yr old=500mcg, via nebulizer,
q4-6hrs.
Combined Salbutamol-Ipratropium: if salbutamol and ipatropium will be used in combination,
initially use a full dose of ipratropium with half dose of salbutamol. A pre mixed preparation is also
available (2.5 mg salbutamol + 500 mcg ipratropium per 2.5 ml; with 1 drop containing approx. 50
mcg salbutamol). For this premixed solution give A: 2.5 ml C: 3 drops/kg/dose, nebulized, q 6-8 hrs
Steroids
— May help, especially with underlying steroid responsive problem (COPD, asthma, etc)
— Useful trial in lymphangitis, carcinomatosis, pulmonary metastases, SVC or tracheal obstruction.
Dexamethasone A: 4-8 mg C: 0.05-0.1 mg/kg, PO/IV/SC, qd-bid.
Mucolytics
May help with thick secretions.
Acetylcysteine A: 200-300mg C: 100mg, PO, tid-qid.
Other OTC agents: guaifenesin, carbocisteine, ambroxol
Protocol for Nebulized Treatment of Dyspnea

Although the role of nebulized opioids is still controversial, the following protocol has been
relatively useful and effective in many cases.
• Start with morphine (A: 2.5 mg C: 0.05 mg/kg) and dexamethasone (A: 2 mg C: 0.04 mg/kg) in
2.5 ml saline given via nebulizer q4 hrs and as needed. Gradually titrate the morphine dose as
needed until dyspnea is relieved or side-effects occur. Monitor closely for bronchospasm.
• Add albuterol/ salbutamol treatments or use albuterol/ salbutamol instead of morphine if
wheezing is heard or bronchospasm is suspected. For moderate to severe wheezing/
bronchospasm, hold morphine.
Managing Refractory Dyspnea

• May be multifactorial. Look for treatable causes.
• Gradually increase the opioid dose. Consider an opioid IV/SC, as a continuous infusion or
regular divided boluses, and as needed for breakthrough dyspnea.
• Start a trial of steroids, such as dexamethasone PO/IV/SC.
• Consider nebulized morphine or hydromorphone (use 5%-15% of the daily dose q 4 hrs prn).
Monitor for airway irritation and bronchospasm.
• Add a low dose benzodiazepine (eg lorazepam, midazolam) to the opioid regimen.
Terminal Dyspnea
Opioids are tne first-choice treatment agents for most nonspecific terminal dyspnea. Because
opioids are so effective, supplemental oxygen often is unnecessary. When oxygen is required to
help relieve severe dyspnea, nasal prongs may be all that is needed because opioids tend to
reduce the patient’s oxygen requirements.
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Edema
Edema is the accumulation of excess fluid in the interstitial spaces. It is common in patients with
advanced diseases. Lymphedema is the accumulation of lymph caused by a defect in the
lymphatic system. It is marked by an abnormal collection of excess tissue proteins, edema, chronic
inflammation, and fibrosis. Simple edema of the extremities are usually pitting, responds better to
limb elevation, responds better to diuretics, associated with smooth tight skin, affects lower
extremities first before upper extremities, and bilateral; while lymphedema is usually less pitting or
non-pitting, less responsive or non-responsive to limb elevation or diuretics, associated with
brawny hyperkeratotic skin, often unilateral, and may affect an upper extremity first.
Acute, Transient and Chronic Edema
Acute-onset, transient Edema lasts less than 6 months. It is associated with pitting edema and
no brawny skin changes. Risk factors include:
-- Surgical drains with extravasation of protein into the surgical site
-- Inflammation following injury, radiation, or infection leading to increased capillary permeability.
-- Immobility of the limb(s) that results in decreased external compression by the musculature
-- Temporary absence of collateral lymphatics
-- Proximal venous occlusion by thrombosis or phlebitis
-- Reversal of equilibrium at the capillary bed that results in accumulation of third-space fluid.
Chronic Edema is difficult to reverse. A deficient lymphatic and/or venous system of the limb is
unable to compensate for the increased amount of fluid. Risk factors include:
-- Tumor recurrence or involvement of the lymphatic system
-- Infection and/or injury of lymphatic vessels
-- Immobility
-- Radiation injury to lymphatic structures
-- Surgery
-- Unsuccessful management of early lymphedema
-- Thrombosis causing venous obstruction.
Early soft, pitting edema may respond well to limb elevation, gentle exercise, and elastic
compression support. Continual and progressive edema causes dilation of lymph vessels and
backflow of fluid into the tissue. Collagen proteins accumulate and increase tissue osmotic
pressure, which further draws fluid from vascular capillaries into the interstitial space. Fluid stasis
and protein causes inflammation and macrophages are activated to degrade the excess proteins.
Fibrosis of the interstitial connective tissue by causes a brawny, stiff, nonpitting lymphedema.
Chronic edema is more difficult to treat. Edematous tissues are at increased risk of infection and
cellulitis. Treatment for patients with advanced edema with chronic fibrosis is more difficult than
when treated earlier. Once tissues are stretched, edema recurs more readily.
Generalized Edema due Hypoalbuminemia causing low plasma oncotic pressure may be caused
by the following:
-- Inadequate oral nutrition (secondary to anorexia, nausea, vomiting, depression, chemotherapy)
-- Decreased intestinal absorption of protein or abnormal protein synthesis/anabolism
-- Protein loss due to leakage of blood, ascites, effusions, or surgical drains
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-- Contributing medical conditions leading to hypoalbuminemia (e.g., diabetes, kidney malfunction,
hypertension, congestive heart failure, liver disease, cancer).
Evaluation
50% of patients with mild edema sense a feeling of heaviness or fullness of the extremity. The
history should include past surgeries, postoperative complications, past radiation treatments, the
time interval from radiation or surgery to the onset of symptoms, trauma, infection, current
medications, intervening variables in the presence or severity of symptoms, quality and behavior of
the edema (fluctuation with position, progression over time). Tests to determine the possible
cause/s of edema may include: renal and liver function tests, urinalysis, serum albumin, CBC,
CXR, and tests for cardiac function (eg ECG, echocardiogram).
There is a lack of uniform clinical criteria. Objective criteria are usually based on circumferential or
volumetric measurements. Some use differences between the affected limb and the unaffected
limb of 1 to 2 cm but anatomical variation, handedness, and body habitus may complicate
interpretation. Other suggestions are water displacement measurement 15 cm above the
epicondyle; or displacement of 6 cm above the elbow. Sequential measurements over time,
including pretreatment measurements, should be made. Measurement should be at consistent
points along the arm, above and below the antecubital fossa, and across the hand or wrist. The
lower extremities should also be measured at consistent points.
Edema is not detectable clinically until the interstitial volume reaches 20-30% above normal.
Stages of Edema
0 = Edema that is barely detectable; elevation helps
1 = Edema detectable; elevation helps; a slight indentation is visible when the skin is depressed.
2 = Early: Edema seen; elevation may or may not help; deeper fingerprint when skin is depressed.
Late: Edema worse; elevation does not help; fibrosis; +/- pitting when skin is depressed
3 = Edema severe; fibrosis and acanthosis; elevation does not help; no pitting when skin is
depressed
Grading the Severity of Edema

Minimal: < 20% volume increase
Moderate: 20-40% volume increase
Severe: >40% volume increase
Prevention
Identify patients at risk for edema early and begin preventive monitoring and instruction for self
care.
Fluid drainage is improved by tissue compression from muscular contractions during exercise. In
exercise, muscles squeeze the soft tissue causing lymph to travel proximally to the vascular
system. Therefore, exercise is important in the prevention of edema.
Because it is easier to manage edema earlier in its course, patients should be taught to report any
of the following symptoms: feelings of tightness in the extremity; tight watch bracelets, rings, shoes,
etc; weakness; pain, aching, or heaviness; redness, swelling, or signs of infection.
General Measures
• Keep edematous arm or leg elevated above the level of the heart, when possible. A severely
lymphedematous extremity that does not respond to elevation may not be elevated, but kept in
a position of comfort instead.
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• Clean and lubricate the skin of the extremity daily.
• Avoid injury and infection of the affected limb:
General measures: avoid prolonged sun exposure; use sunscreen; clean wounds with soap and
water, and consider antibacterial ointment; avoid venipuncture/injections/infusions in affected
extremity; avoid extreme hot or cold (eg heating pads,ice packs); avoid prolonged and
strenuous work with the affected extremity. Upper extremities: be careful when using razor for
shaving and when cutting nails, wear gloves when gardening, cooking, etc; thimbles for sewing.
Lower extremities: be careful when using razor for shaving and when cutting nails, use
protective footwear; keep feet clean and dry; wear cotton socks; monitor for symptoms of
ingrown nails and infections.
• Avoid constrictive pressure on the arm or leg:
Avoid crossing legs; wear loose jewelry and clothes; carry bag on opposite arm; use blood
pressure cuffs on opposite side; avoid elastic bandages and stockings except those prescribed
or approved by the physician; do not sit in one position without change for longer than 30
minutes.
• Regular exercise of affected extremities (eg walking or other leg exercises for leg edema).
Include active range of motion exercises of the affected extremities (passive exercises if the
patient is too weak).
• Closely observe all areas of the limb daily for signs of problems. Monitor for signs of infection
(e.g., redness, pain, heat, swelling, fever, etc).
• Measure the circumference of the arm or leg at intervals suggested by your doctor at 2
consistent levels on the limb and report any sudden increase in size to your physician.
• Sensation may be diminished; be careful and avoid injury especially when sensation is
diminished. Use the unaffected extremity to test temperatures (e.g., for bath water, cooking).
Regularly check affected exremities for vidence of injury or infection.
Management
Mechanical Interventions
Mechanical interventions include limb elevation; manual lymphatic drainage (massage that
mobilizes edema fluid from distal to proximal areas and from areas of stasis to areas of healthy
lymphatics); compression bandages and pressure-graded garments; and good skin hygiene to
prevent infection. Manual lymphatic drainage usually involves gentle massage of the patient’s skin
and subcutaneous tissue- to empty lymph nodes so that they can absorb fluid; first on the thorax
and then on the extremities; and done on a distal to proximal direction- first on the unaffected side,
then moving to the affected side. This can be taught to the patient and family. Traditional types of
vigorous massage should be avoided since it can further damage subcutaneous tissues and
lymphatic vessels. Compression bandages and compression garments should cover the entire
area of significant edema. Compression bandaging involves the application of a soft padding (eg
soft gauze) to protect the skin, followed by a compression bandage wrapped around the extremity,
from distal to proximal, with gradually decreasing pressure. A combination of bandaging followed
by a compression garment can be more effective that either one method alone. Knee high
stockings can cause problems if there is significant edema in the thigh, by occluding lymphatic and
venous vessels. The combination of a compression bandage or garment, and muscle contractions
during exercise can help mobilize and drain subcutaneous fluid. Intermittent sequential pneumatic
compression may also be helpful. The cuff is alternately inflated and deflated according to a
controlled time cycle. Complex decongestive therapy consists of manual lymphedema treatment,
compression wrapping, individualized exercises (including active range of motion exercises-
passive exercises if too weak), and skin care, followed by a maintenance program. Complex
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decompressive therapy may be effective for lymphedema that is unresponsive to standard elastic
compression therapy. Surgical interventions include: debulking/ excisional procedures (removing
skin and subcutaneous tissue), drainage procedures (to relieve localized, proximal lymphatic
obstruction), and liposuction. They are usually only partially successful (many patients will still need
to wear compression garments/ dressings). Complications may also occur such as skin necrosis,
infection, and sensory difficulties.
Pharmacologic therapy uses antibiotics to treat and prevent bacterial cellulitis and lymphangitis.
Antibiotics should be given that are effective against gram-positive cocci and, less frequently,
fungal infections. Laboratory data (e.g., complete blood cell count [CBC]) should be evaluated.
Because massage and techniques to encourage drainage would be contraindicated if venous
thrombosis is present, diagnostic tests may be indicated to distinguish vascular blockage from
deep vein thrombosis. If thrombosis is found, anticoagulation therapy should be given.
Diuretics: Loop diuretic (furosemide A: 40 mg C: 0.8 mg/kg PO/IV/IM qday; or bumetanide 1 mg
C: 0.02 mg/kg PO/IV/IM qday) +/- spironolactone (A: 50-100 mg C: 1-2 mg/kg PO qday). Gradually
titrate doses and increase frequency as needed. Monitor for dehydration/ intravascular volume
depletion, kidney dysfunction, cardiovascular dysfunction, and electrolyte problems.
Diuretics can be tried especially if edema causes significant discomfort, limited mobility, or distress.
Diuretics are less effective for advanced lympedema. Diuretics encourage vascular fluid depletion;
but in advanced lympedema, they do nothing for excess protein deposits and could hasten
connective tissue fibrosis. For lymphedema, diuretics should be used with caution and only for the
treatment of any secondary venous component of lymphedema, or excess vascular fluid due to
other causes.
Cortecosteroids: If diuretics do not produce adequate results, especially in tumors causing
lymphatic compression, consider a trial of corticosteroids such as dexamethasone (A: 4-6 mg C:
0.1 mg/kg PO qd-bid, short course, tapering dose).
Dietary Management
The nutritional status of the patient should be evaluated and adequately managed.
Hypoalbuminemia encourages fluid to pass into interstitial tissues with excess protein and higher
colloid osmotic pressure. The serum albumin level should be kept above 2.5 g/dL. Monitor body
weight. Encourage patients to eat protein-rich foods and supplements.
Pain Management
Patients may experience pain due to nerve compression, or atrophy or muscle contractures during
movement. Following assessment, pain should be managed (see section on pain management).
Successful reduction of the edema improves pain.
Complications
Patients should be monitored for areas of skin breakdown, especially over bony prominences.
Excess pressure on inguinal or pelvic lymphatics may indicate pelvic metastasis with subsequent
interference of bladder emptying. Pressure, in conjunction with opioids, may cause problems with
bowel elimination. Patient bladder and bowel status should be monitored for signs of urinary
retention or constipation. Avoid frequent blood pressure measurements, venipunctures, injections,
and other procedures on the affected extremities.
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Psychosocial Considerations
Edema is disfiguring and sometimes painful and disabling, it can create problems in many aspects
of functioning, e.g., psychologic, physical, and sexual. Treatments for edema can be
uncomfortable, difficult, and time consuming. Group and individual counseling that includes
preventive measures, the role of diet and exercise, advice for selecting comfortable clothing, and
emotional support can be helpful.
Fatigue
Fatigue is the sensation of tiredness, exhaustion, or lack of energy, which results in decreased
capacity to perform tasks and activities in life. Fatigue can be very debilitating and it can negatively
affect the quality of life. It is a problem in as much as 75 to 90 percent of patients with advanced
cancer or other advanced diseases. Fatigue in patients with advanced disease is usually
multifactorial. Assessment and management should be multidimensional. Reversible and
irreversible causes and factors should be determined; and reversible causes should be treated as
much as possible. Management should include both pharmacologic and non-pharmacologic
interventions.
Causes and Contributing Factors

Fatigue can arise from both physical, psychosocial, and even spiritual problems and stresses.
Causes and contributing factors include: ancer, liver disease (liver failure, acute/ chronic hepatitis,
cirrhosis), kidney disease (eg acute and chronic kidney failure), respiratory impairment,
neuromuscular dysfunction, other chronic illnesses (eg cardiovascular/ pulmonary/ neuromuscular),
chronic pain, hematologic disorders (eg anemia, lymphoma, leukemia), psychosocial problems-
including anxiety and depression, cachexia-anorexia, endocrine disorder and hormone deficiency
(eg hypothyroidism, hyperparathyroidism, hypopituitarism, Addison’s disease, diabetes), excessive
inactivity, infection, inflammatory diseases (eg connective tissue disease, inflammatory bowel
disease, sarcoidosis), medication side-effects (eg psychotropics, chemotherapeutics,
antihypertensives), alcohol or drug abuse, other treatment related adverse effects.
Characteristics
— sensation of fatigue, diminished energy, increased need to rest not proportional to activity
— limb heaviness, generalized weakness without true loss of motor function
— distressing or associated with diminished capacity to perform and inability to complete daily
tasks due too feeling of fatigue, prolonged fatigue after exertion
— perceived need to struggle to overcome fatigue and inactivity
— decreased motivation and interest to engage in activities, exhaustion, apathy, lassitude
— insomnia or hypersomnia, unrefreshing or nonrestorative sleep, sense of sleepiness
— diminished concentration and attention, problems with short term memory
— mood disturbances described as irritability, frustration, sadness due to feeling of fatigue
Evaluation
Determine the fatigue severity, factors that worsen or relieve fatigue, potentially treatable causes,
and impact on daily activities and quality of life. Determine any underlying psychosocial problems.
Look for reversible/ correctible cause/s.
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History: fatigue (severity, onset, duration, pattern, course, factors the worsen or relieve,
description/ characteristics- eg lack of energy, weakness, sleepiness, impaired thinking, depressed
or anxious mood, distress and effect on quality of life), effect of sleep and rest (not improved-
psychosocial causes, improved but easily gets fatigued- physical causes), psychosocial (eg
anxiety, depression, anger, conflicts, adjustment problems, stress), pattern of rest/ sleep/ activity,
sleep problems, other information to determine specific cause/s
Physical exam: careful physical exam, including neurological exam, to determine specific cause/s;
mood/ affect/ behavior during evaluation.
Possible tests: Depends on suspected cause/s and guided by history and physical exam findings.
Tests may include: CBC, ESR/ CRP, urinalysis, electrolytes, BUN/Crea, thyroid function tests,
glucose/ diabetes screen, CXR, ECG, HIV, ANA, psychosocial assessment and evaluation
Management
Specific Management
• Evaluate for and treat reversible causes and contributing factors.
• Regularly evaluate response to management interventions. Monitor for adverse effects.
• This may involve the treatment of: anemia, deconditioning, insomnia, mood problems (eg
depression), hypoxia, electrolyte disorders, cachexia, chronic pain, endocrine disorders,
hypogonadism, psychosocial problems, spiritual problems and others (see list of causes and
contributing factors above).
• Anticipatory guidance/ education of patient and family on fatigue due to advanced illness;
including fatigue related to medications and other interventions.
• Educate and instruct the patient and family on deconditioning (eg prolonged bed rest or
inactivity resulting in loss of muscle, decreased cardiac function, decreased endurance, and
easy fatiguability), the importance of exercise, and overexertion (eg overexertion of patients
with advanced disease, who are trying to maintain their personal, work, and social activities).
• Begin an activity and/or exercise program- keep the goals and the regimen attainable and
appropriate based on individual limitations. Exercise may be: light-moderate intensity walking,
use of stationary bike or threadmill, or simple active and passive range of motion exercises.
Family caregiver/s can help with exercises and activities which require their assistance.
• Help the family and patient develop caregiving and self-care abilities to cope with fatigue.
• Instruct the patient or the caregiver to record energy levels, sleep patterns, activities, and other
significant concerns during the day.
• Identify emotions, activities, and other factors that cause fatigue and correct or modify them.
• Modify activities to offset fatigue. Create an Activity-Rest Program: schedule important activities
during times with less fatigue, and schedule times for rest and sleep. Eliminate unimportant,
and fatigue causing activities. Energy conserving measures, assistive devices, and techniques.
• Good sleep hygiene. Ensure adequate hydration and nutrition.
• Physical/ cardiac/ pulmonary rehabilitation programs if indicated. Physical and occupational
therapy if appropriate.
• Provide psychosocial and spiritual support. Manage psychosocial and spiritual distress.
Psychosocial interventions may include: cognitive-behavioral, relaxation, and supportive
interventions.
• Promote coping and adjustment to condition.
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• Encourage activities or hobbies that the patient can easily do (such as reading, drawing) to
retain a sense of creativity and usefulness.
• Rearrange and improve the patient’s living space. Remove obstacles; provide assistive devices.
• Fatigue associated with anemia may be relieved by a blood transfusion or a trial of
erythropoietin to stimulate red blood cell production.
• Fatigue associated with simple dehydration may be corrected with a short course of
hypodermoclysis or intravenous fluids.
• Steroids such as dexamethasone (A: 4 mg, C: 0.04-0.8 mg/kg, qd-bid, PO/IV/IM/SC) and
prednisone (A: 20 mg C: 0.2-0.4 mg/kg PO qday-bid) can bring about feelings of well-being and
increased energy, although these effects may diminish after the drug has been used for four to
six weeks. Start at low doses and titrate based on response or occurrence of side-efects.
Adrenal insufficiency also responds to steroid treatment.
• Progestational Agents such as megestrol acetate, may result in improvement of fatigue, as
well as appetite, and nutritional intake, within 1-2 weeks. Start at (A: 160 mg C: 2-3 mg/kg qday)
and increase up to (A: 160 mg C: 2-3 mg/kg tid-qid) depending on response. Consider 2-3 week
trial, and discontinue if there is no symptom benefit observed.
• Psychostimulants, such as methylphenidate, dextroamphetamine, and modafinil. Starting
doses: methylphenidate (A: 2.5-5 mg C: 0.1-0.2 mg/kg, PO, qd-bid), dextroamphetamine (A:
2.5-5 mg C: 0.1-0.2 mg/kg, PO, qd-bid), modafinil (A: 50-100 mg C: 1-2 mg/kg, PO, qd).
Methylphenidate and d-amphetamine can be given every morning, or every morning and noon.
Modafinil is a non-amphetamine CNS stimulant. Titrate based on relief of fatigue, or side-effect.
The usual effective doses for methyphenidate and d-amphetamine are (A: 5-15 mg C: 0.1-0.3
mg/kg, PO, qam and noon); and for modafinil are (A: 200-300 mg C: 4 mg/kg, PO, qam).
Caffeine (A: 100-200 mg C: 2-4 mg/kg PO qday; one glass of caffeinated drink or one cup of
coffee contains approx. 50-80 mg caffeine) and pemoline (A: 75 mg C: 37.5 mg PO qam) may
also be helpful.
Monitor for side-effects: euphoria, insomnia, mood lability, anorexia, nightmares, paranoia, and
possible cardiovascular complications.
• Hormonal agents. Testosterone may be helpful for men especially those with HIV. Treat
endocrine and hormonal problems as needed (eg corticosteroids, thyroid hormone).
• Omega 3 Fatty Acids may improve fatigue, as well as cachexia and anorexia, within 2-3
weeks. Studies have shown mixed results; discontinue if there is no symptom benefit observed
after 3-4 weeks.
• L-Carnitine supplementation may improve fatigue, depressed mood, and sleep in patients with
advanced illness- many of whom are deficient in carnitine. Consider 2-4 week trial, and
discontinue if there is no symptom benefit observed.
• Cholinesterase Inhibitors such as donepezil (A: 5-10 mg C: 0.1 mg/kg PO qday), which
increase CNS cholinergic activity, may help relieve fatigue, anxiety, depression, anorexia, and
insomnia in some patients. These are also used for dementia (eg Alzheimer’s disease), and
occassionaly for opioid induced sedation.
• Other commonly used medications. Antidepressants (for depression), short acting hypnotics
(for insomnia), axiolytics (for stress and anxiety)
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Hiccups
A hiccup is an involuntary, spasmodic contraction of the diaphragm that is followed by sudden
inspiration and closure of the glottis, resulting in the characteristic "hic" sound. Hiccups can be a
transient benign annoyance, but they can also indicate underlying pathology in many organ
systems. Intractable hiccups can lead to insomnia, fatigue, weight loss, malnutrition, depression,
arrhythmias, postoperative pain, wound dehiscence, reflux esophagitis, and physical and
psychologic exhaustion.
Causes
Hiccups are thought to be a pathologic respiratory reflex. Any irritation or stimulation along this
reflex pathway can cause hiccups. Reported causes of hiccups involve almost every organ system
and include: gastric or esophageal disease (distention, obstruction, and inflammation); mediastinal,
cervical, or intracranial tumor; other CNS disease (such as encephalitis, meningitis, brain stem
lesions, and head trauma); nerve irritation or injury (vagus nerve, phrenic nerve); metabolic
disorders (hypocalcemia, hyponatremia, alcoholism and uremia); medications (including
benzodiazepines, barbiturates, and corticosteroids); diaphragmatic irritation; infections; and
psychogenic causes.
Management
Treat any associated or underlying problems, particularly the common causes which include:
gastric distension, esophageal reflux, anxiety, drug induced (benzodiazepines, corticosteroids,
barbiturates), electrolyte imbalance.
The symptomatic management of hiccups is based on limited evidence. If underlying disease is
found to be the cause, try to treat it if possible. Several invasive, pharmacologic, and
nonpharmacologic "alternative" treatments have been described for hiccup, with two of the most
commonly used being phenothiazines and butyrophenones. Many nonpharmacologic remedies
involve stimulation of the oropharynx or nasopharynx, possibly disrupting the afferent limb of the
reflex arc. Vagal stimulation and disruption of phrenic nerve transmission (ranging from tapping
cervical vertebrae to transection of the nerve) have been used. Pharmacologic treatments include
anticonvulsants (such as carbamazepine and valproic acid), antipsychotics/neuroleptics (such as
chlorpromazine, haloperidol, and metoclopramide), muscle relaxants (such as baclofen), and
calcium channel blockers (nifedipine).
• Interference of respiratory mechanisms: breath holding, breathing into a paperbag, sneezing,
coughing, hyperventilating
• Nasopharyngeal stimulation: swallowing dry granulated sugar (1-2 tsp) or dry bread, drink/ sip
ice water slowly, swallowing crushed ice, NGT stimulation, stimulate soft palate or lifting the
uvula with cotton swab, gargling water
• Vagal stimulation methods: carotid sinus massage, valsalva maneuver, nasopharyngeal suction
• Behavioral interventions and hypnosis
• Antacids with Simethicone/ Charcoal: for gastric distension, gastritis, exophagitis
• Metoclopramide (A: 5-20 mg C: 0.1-0.2 mg/kg, PO/SC/IV/IM tid-qid): for gastric/ esophageal
distension or motility problems
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• Domperidone (A: 5-10 mg C: 0.1 mg/kg, PO qd-tid): for gastric/ esophageal distension or
motility problems
• Baclofen (A: 5-20 mg C: 0.1-0.2 mg/kg, PO tid): consider if simethicone/ charcoal, and/or
promotility drugs fail
• Haloperidol (A: 0.5-2 mg C: 0.01-0.04 mg/kg, PO/IV/SC/IM qd-tid): less problematic than
chlorpromazine; effective in many cases
• Chlorprornazine (A: 25-50 mg C: 0.5 mg/kgPO/IV/IM/PR qd-qid): may cause hypotension
• Nifedipine (A: 10-20 mg C: 0.2 mg/kg, PO q 8 hrs)
• Phenytoin (A: 200 mg C: 4 mg/kg IV or A: 300-400 mg C: 6 mg/kg, PO qd): for CNS causes
• Valproate (A: 250-500 mg C: 4-5 mg/kg, PO tid): for CNS causes
• Midazolam (A: 0.5-1 mg C: 0.02 mg/kg, PO/slow IV/IM q3-6 hr; For severe, distressing and
refractory hiccups, consider A: 10-15 mg/day C: 0.2-0.3 mg/kg/day IV/SC infusion, carefully
titrated to effect, under close monitoring)
Other interventions
• Phrenic nerve block; surgical interruption of the phrenic nerve; phrenic nerve stimulation/ pacing
Muscle Spasms
Muscle spasms are common. Neurodegenerative processes in particular may cause frequent
painful muscle spasms. Painful frequent spasms cause significant distress to the patient and
family. Various causes include: neurologic/ neurodegenerative problems, metabolic causes,
electrolyte imbalance, muscular disorders, pain, and others.
Evaluation and Management
• Identify possible causes and precipitating factors and manage appropriately.

• Muscle spasms may be precipitated by pain; and spasms can then exacerbate the pain
(viscious cycle). Give appropriate analgesics for the pain.
• Teaching the family and carers on proper seating, positioning, moving, and transferring, may
prevent or decrease the episodes of spasms.
• Rest and and non-pharmacological interventions for pain relief (see chapter on pain).
• All medications used to treat muscle spasms can cause sedation- some more than others.
Commonly Used Medications

• Baclofen (A: 5-20 mg C: 0.1-0.3 mg/kg, PO tid-qid). May make seizures worse.
• Diazepam (A: 2-10 mg C: 0.04-0.7 mg/kg, PO bid-tid). More sedating.
• Tizanidine (A: 2-4 mg C: 0.04-0.08 mg/kg, PO bid-tid).
• Chlorzoxazone (A: 250 mg C: 5 mg/kg, PO tid-qid).
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Nausea and Vomitting
Nausea is an unpleasant subjective sensation experienced in the throat and/or the epigastrium that
is associated with a feeling of the need to vomit. It may or may not result in vomiting. Vomiting is
the forceful expulsion of contents of the stomach, duodenum, or jejunum through the oral cavity,
caused by forceful and sustained contraction of the abdominal muscles and the diaphragm.
Retching (or dry heaves) consists of rhythmic spasmodic contractions of the diaphragm and
abdominal muscles, and gastric and esophageal movements of vomiting without expulsion of
vomitus.
Nausea and vomiting can significantly impair quality of life. As many as 50% of patients experience
nausea and vomiting- especially during the final stages of illness. Nausea and vomiting can result
in serious metabolic derangements, nutritional depletion and anorexia, deterioration of patients’
physical and mental status, esophageal tears, fractures, wound dehiscence, withdrawal from
potentially useful and curative antineoplastic treatment, and degeneration of self-care and
functional ability.
Classification
Nausea and vomiting (N&V) can be classified as acute, delayed or late, persistent or chronic,
anticipatory, breakthrough, or refractory. It can also be classified based on type of treatment (e.g.,
chemotherapy- or radiation-induced), and clinical course (e.g., advanced or terminal).
• Anticipatory nausea and vomiting (ANV): Occur prior to exposure to a causative factor (eg
chemotherapy), due to conditioned stimuli such as the smells, sights, and sounds of the treatment
area. Usually occurs after 3-4 prior chemotherapy treatments, which caused acute or delayed N&V.
• Acute nausea and vomiting (or emesis): Experienced during the first 24-hour period after
exposure to causative factor (eg chemotherapy).
• Delayed (or late) nausea and vomiting (or emesis): Occurs more than 24 hours after
exposure to a causative factor. Associated with cisplatin, cyclophosphamide, and other
medications (e.g., doxorubicin and ifosfamide) given at high doses or on consecutive days.
• Chronic nausea and vomiting (or emesis) in advanced cancer / advanced disease
patients: Associated with a variety of potential etiologies. Potential causes include gastrointestinal,
cranial, metabolic, drug-induced (e.g., morphine), cytotoxic chemotherapy, and radiotherapy.
• Breakthough nausea and vomiting (or emesis): Intermittent exacerbations above the level
addressed by ongoing antiemetic regimen.
• Refractory nausea and vomiting (or emesis): Not responsive to trials of antiemetic regimens.
Causes
Chemoreceptor Trigger Zone (CTZ)

Drugs (e.g., opiates, digoxin, chemotherapy, carbamazepine, antibiotics, theophylline): nausea
after drug is started or given, worse after dose increases; Tx: decrease drug dose, or discontinue
the drug if possible
Metabolic (e.g., renal or liver failure or tumor products, metabolic acidosis, electrolyte
abnormalities- see below): increased bun, crea, or bilirubin; Tx: 5-HT3 antagonists, or
butyrophenones
Hyponatremia: low sodium, confusion, somnolence, delirium; Tx: Na or salt supplementation,
demeclocyclione (for SIADH)
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Hypercalcemia high calcium; Tx: hydration, bisphosphonates
Cortex
CNS tumor: Neurologic signs, mental status changes; Tx: Dexamethasone, radiotherapy for new
metastases
Increased intracranial pressure: Projectile vomiting, headache; Tx: Dexamethasone
Anxiety and other conditioned responses: anticipatory nausea, predictable vomiting; Tx:
Counselling and other psychosocial interventions, anxiolytics
Uncontrolled pain and other discomfort: pain with nausea; Tx: appropriate pain management
Migraine
Vestibulocochlear / Middle Ear

Vestibular disease: Meniere’s, head turning causes vertigo, nausea and/or vomiting; Tx:
anticholinergics, antihistamines
Middle ear infection: ear pain, red or bulging tympanic membrane; Tx: antibiotics and
decongestants (if needed), antihistamines, anticholinergics
Motion sickness: travel related nausea; Tx: antihistamines, anticholinergics
Gastrointestinal Tract
Drugs: use of NSAIDs, iron, alcohol, antibiotics; Tx: discontinue the drug if possible, proton pump
inhibitors, H2 blockers, antacids
Gastroduodenal: (eg ulcer, gastritis/ duodenitis, gastric outlet obstruction, atony, gastric surgery)
Tx: promotility agents, proton pump inhibitors, H2 blockers, antacids, sucralfate
GI tract infection, tumor infiltration, or radiotherapy (eg Candida esophagitis, radiation colitis, etc):
based on history and course of cancer and treatment, findings of colitis, fiondings of infection; Tx:
treat the infection, butyrophenones +/- antihistamines
Constipation, Impaction: no bowel movement, abdominal distension, rectal exam findings; Tx:
laxatives, manual disimpaction, enemas
Poor motility: constipation, conditions affecting motility, diabetic gastroparesis, atony, ileus,
responsive to motility agents; Tx: motility agents (metoclopramide, domperidone)
Hepatobiliary, pancreatic, peritoneal: (eg tumor, hepatitis, cirrhosis, cholecystitis/ cholelithiasis,
pancreatitis, peritonitis); Tx: based on specific etiology
Tube feeding: nausea after feeding, abdominal distension, diarrhea; Tx: reduce feeding volume
Nasogastric tube: gag reflex and nausea after insertion of nasogastric tube; Tx: remove NGT
Nasopharyngeal bleeding: hemoptysis, epistaxis, blood seen in pharynx; Tx: packing, treat
underlying bleeding disorder
Thick secretions: nausea with coughing; Tx: nebulized saline, expectorant if good cough reflex,
anticholinergic if poor cough reflex, treat respiratory tract infection, correct dehydration
Other Causes: cardiovascular (eg infarction, CHF); pulmonary (COPD); systemic or local infection;
endocrine (eg hypothyroidism, adrenal insufficiency); food intolerance/ food allergy; pregnancy
Evaluation
History should include: nausea (Is it constant/variable/worse with movement? related to drugs?
associated with vomiting or relieved with vomiting?); vomiting (on movement? Large volume/small
volume/? undigested food? Any temporal relationship between food intake and vomiting?); nature
of vomitus (large residue/ food particles- gastric retention, acidic/ acrid- gastroduodenal, fecal-
intestinal obstruction or gastrointestinal fistula, coffee ground/ bloody- upper GI, bile-
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gastroduodenal0; abdominal pain; abdominal distension/swelling; heartburn/ dysphagia; weight
loss; bowel movement (constipated/? impacted? obstructed? laxative use?); headaches (raised
intracranial pressure?); coughing (produces vomiting with little nausea?); antiemetics used
(including dose/route, use higher dose/different route?,or different agent?); psychosocial problems;
precipitating and exacerbating factors ( pain, fear, anxiety, wound odors, etc.); current medications;
symptoms of metabolic disorder or infection
Examine for abdominal tenderness/ guarding, abdominal distension/ swelling, jaundice, bowel
obstruction, fecal impaction, dehydration, and raised intracranial pressure. Examine for oral or
pharyngeal problems (eg candida infection), post nasal drip, hydration state, neurological signs +/-
papilledema, and findings of metabolic disorder or infection.
Possible Tests: Depends on suspected cause/s and guided by history and physical exam findings.
Tests may include: CBC (infection), BUN/Crea, electrolytes, Cr (Uremia), LFT (hepatic failure), Ca,
amylase, bicarbonate and/or ABG (acid-base disorder), urinalysis, A plain flat-plate x-ray of the
abdomen can determine extent and cause of constipation (eg ileus/ severe constipation/
impaction/obstruction), stool for occult blood/ cultures/ ova and parasites, gastric aspiration studies,
Digoxin level, Ultrasound, endoscopy, CXR, ECG/ cardiac enzymes (suspected cardiovascular
cause), CNS imaging, thyroid function and other endocrine tests, further studies to evaluate
associated findings (eg jaundice, unexplained anemia, congestion, fever), evaluation for
psychosocial causes.
Criteria for Grading Severity of Nausea and Vomiting

Grade Nausea Vomiting
Grade 1 Loss of appetite without alteration in 1 episode in 24 hrs
eating habits
Grade 2 Oral intake decreased without 2–5 episodes in 24 hrs; IV fluids
significant weight loss, dehydration or indicated <24 hrs
malnutrition; IV fluids indicated <24 hrs
Grade 3 Inadequate oral caloric or fluid intake; ≥6 episodes in 24 hrs; IV fluids, or
IV fluids, tube feedings, or TPN TPN indicated ≥24 hrs
indicated ≥24 hrs
Grade 4 Life-threatening consequences Life-threatening consequences
Grade 5 Death Death
from: Cancer Therapy Evaluation Program, Common Terminology Criteria for Adverse Events, Version 3
ASCO drug classification based on risk of acute and delayed emesis

(Kris and Hesketh, 2006)
High risk: Emesis that has been documented to occur in more than 90% of patients:
Cisplatin, mechlorethamine, streptozotocin, cyclophosphamide 1,500 mg/m2 or more, carmustine,
dacarbazine, dactinomycin
Moderate risk: Emesis that has been documented to occur in 30% to 90% of patients:
Carboplatin, cyclophosphamide less than 1,500 mg/m2, daunorubicin, doxorubicin, epirubicin,
idarubicin, oxaliplatin, cytarabine more than 1 g/m2, ifosfamide, irinotecan
Low risk: Emesis that has been documented to occur in 10% to 30% of patients:
Mitoxantrone, paclitaxel, docetaxel, mitomycin, topotecan, gemcitabine, etoposide, pemetrexed,
methotrexate, cytarabine less than 1,000 mg/m2, fluorouracil, bortezomib, cetuximab, trastuzumab
Minimal risk: Emesis that has been documented to occur in fewer than 10% of patients:
Vinorelbine, bevacizumab, rituximab, bleomycin, vinblastine, vincristine, busulphan, fludarabine, 2-
chlorodeoxyadenosine
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Aside from emetogenic risk, the dose and schedule must be considered. A drug with a low risk
given in high doses may cause an increase in risk. Another factor is the drug combination. The
emetogenic risk of the drugs combined should be considered.
Management

Good oral hygiene. Comfortable and relaxed environment. Dietary modification- monitor for N/V,
and avoid food/ drink that worsens or precipitates N/V. Modify diet based on underlying conditions
(gastrroesophageal, hepatic, renal, metabolic, etc). Small frequent meals, especially if patient
experiences early satiety. Small frequent feeding; avoid large meals. Avoid and remove strong or
foul odors. Consider decreasing the smell and sight of food between feedings/ meals.
Specific Management
Identify and manage reversible causes and precipitating factors- eg antacids, modify opioid
regimen, relieve constipation, correct metabolic abnormalities, corticosteroids and radiotherapy for
brain metastases, modify or removing other offending agents.
Non-Pharmacologic Measures
Some non-pharmacologic measures that may be helpful include: relaxation techniques, hypnosis
and imagery, desensitization, and other behavioral interventions
Knowledge of the emetic pathways and possible underlying causes should guide treatment.
Treatment of Anticipatory Nausea and Vomitting

Antiemetic drugs are used; however they may not adequately control ANV once it has developed.
Behavioral interventions include progressive muscle relaxation with guided imagery, hypnosis,
systematic desensitization, electromyography (EMG) and thermal biofeedback, and distraction.
Early screening and close monitoring are essential. The earlier it is identified, the more likely
treatment will be effective.
Treatment of Acute/Delayed Nausea and Vomitting

Antiemetic agents are most commonly used. Peripheral neuroreceptors and the chemoreceptor
trigger zone (CTZ) contain receptors for serotonin, histamine (H1 and H2), dopamine,
acetylcholine, opioids, and numerous other endogenous neurotransmitters. Many antiemetics block
these receptors and inhibit stimulation of peripheral nerves at the CTZ, and the vomiting center.
Delayed emesis can be managed with a combination of metoclopramide and dexamethasone, with
diphenhydramine given prophylactically or immediately when EPS occurs.
Treatment of Chronic Nausea

Metoclopramide and domperidone are effective. They improve GI motility and act on the
chemoreceptor trigger zone (antidopaminergic effect). Extrapyramidal-related side effects may
occur but are infrequent. Domperidone is associated with fewer extrapyramidal side effects.
Antihistamines, eg dimenhydrinate, may be used if a complete bowel obstruction is suspected (and
prokinetic agents are contraindicated) or if patients cannot tolerate other antiemetic agents.
Haloperidol may also be used for bowel obstruction. Phenothiazines may be used, but they have a
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high rate of side effects, eg sedation and anticholinergic-related effects (orthostatic hypotension
and confusion). Chlorpromazine is moderately potent but has a high rate of sedation, postural
hypotension, and anticholinergic side effects. Piperazine derivatives such as prochlorperazine are
more potent antiemetics but cause more extrapyramidal side effects. Anticholinergics, eg hyoscine
butylbromide, can be useful for patients with colic due to complete bowel obstruction.
Corticosteroids such as dexamethasone may be useful in combination with another antiemetic. 5-
HT3 receptor antagonists (such as ondansetron) may be used for those that have failed all other
treatments. Olanzapine (an atypical antipsychotic) may be useful for opiate-induced nausea.
Medications for Nausea and Vomiting
Serotonin 5HT3 Receptor Antagonists

Prevents serotonin released from enterochromaffin cells in the GI mucosa, from initiating afferent
transmission to the CNS via vagal and spinal sympathetic nerves; and blocks serotonin stimulation
at the CTZ and other CNS structures. Helpful in acute/delayed nausea and vomiting. Very effective
for chemotherapy induced nausea and vomiting (eg cisplatin).
Ondansetron - 0.15 mg/kg/dose PO q 6-8 hours to max of 32 mg/d. IV = PO. Or 10-30 kg= 1-2
mg/dose; >30 kg=2-4 mg PO/IV q 6-8 hours.
Granisetron - 0.04 mg/kg PO q 8 hours to max of 2 mg/d; 0.01 —0.02 mg/kg IV; Usual adult dose
of PO:2mg qday, or 1mg BID; and IV: 10mcg/kg used acutely of prior to emetogenic treatment.
Dopaminergic (D2 subtype) Receptor Antagonists

1. Substituted Benzamides
Metoclopramide (Dose: Mild N&V and prokinetic dose: Adults 5-15mg before meals and at
bedtime. Children: 0.2-0.5 mg/kg/dose to max of 15mg/dose. SC/IV = PO. Moderate-Severe N&V:
1 to 2 mg/kg every 2-4 hours for 3 to 5 doses. It can be given safely by IV bolus at higher single
doses (up to 6 mg/kg) and by continuous IV infusion, with or without a loading dose, with efficacy
similar to intermittent dosing. Dose for significant antiemesis is greater than pro-kinetic dose).
A very effective for N&V. A dopaminergic receptor antagonist, which becomes more effective at
higher doses, because of its 5-HT3 receptor antagonism. Also increases lower esophageal
sphincter pressure and gastric emptying.
Extrapyramidal reactions (EPRs) and dystonic reactions may occur, more commonly in age< 30
years. Diphenhydramine (1.0 mg/kg/dose IV/IM/PO), benztropine mesylate (0.02—0.05
mg/kg/dose to max of 4 mg IV), and trihexyphenidyl are used to resolve EPRs. Cogwheeling
rigidity, acute dystonia, and tremor responds to anticholinergic medications. Akathisia, a subjective
feeling of restlessness or inability to sit still, is managed by (1) lowering the dose; (2) switching to
lower potency neuroleptics; or (3) adding a benzodiazepine (i.e., lorazepam) or beta blocker (i.e.,
propranolol).
2. Domperidone (Dose: A:10-20 mg C: 0.25--0.5 mg/kgPO TID-QID)
Separate chemical class of antidopaminergic drugs. Facilitates gastric emptying by increasing
esophageal and gastric peristalsis and by lowering esophageal sphincter pressure. Antiemetic
properties are due to its antidopaminergic effect mainly on the GI tract, and less on the
chemoreceptor trigger zone- since it less reaily crosses the blood-brain barrier. CNS adverse
effects such as EPRs are also less likely compared to metoclopramide.
3. Phenothiazines
Act on dopaminergic receptors at the CTZ and other CNS areas; and peripherally. Aliphatic
phenothiazines (e.g., chlorpromazine, methotrimeprazine) produce sedation and anticholinergic
effects, while piperazines (e.g., prochlorperazine, thiethylperazine, perphenazine, and
fluphenazine) are associated with less sedation but greater risk of extrapyramidal reactions.
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Chlorpromazine – A: 10-50 mg, C: 0.2--1.0 mg/kg q6-8 hours PO/IV/IM/PR. Or (A: 10--50 mg C:
age >12 years: 10 mg every 6–8 hours; age < 12 years: 5 mg q6–8 hours). Start with lowest dose
given q8 hours, and slowly titatre as needed. More sedating. SC is irritating to tissue.
Prochlorperazine – A: 5--10 mg, max: 40 mg; C: 0.1-0.15 mg/kg/dose, max: 10 mg, BID-TID
PO/IV/IM/PR. Irritating to tissues when given SC. Start with lowest dose given q12 hours, and
slowly titatre as needed. Marked hypotension may result if IV prochlorperazine is administered
rapidly at high doses. Administration over at least 30 minutes appears adequate to prevent
hypotensive episodes.
Perphenazine – A: 4--6mg, C: age<12: 2 mg, age>12: 4 mg BID-TID PO/IM
4. Butyrophenones
Dopaminergic receptor antagonists which are similar to the phenothiazines. Droperidol and
Haloperidol are potent antiemetics; they are very potent inhibitors of the CTZ. Both agents may
produce EPRs, akathisia, hypotension, and sedation. They cause less adverse cardiovascular
effects than phenothiazines.
Droperidol – A: 1--5 mg every 2 to 6 hours; C: 0.05 mg/kg/dose q 4-6 hours; IV/IM
Haloperidol – A: 0.5--5 mg/dose C: 0.01-0.05mg/kg/dose PO q 6-8hours up to 30 mg/day. SC/IV =
1/2 PO. Start with lowest dose (A: 0.5 mg C: 0.01 mg/kg PO tid) and gradually titrate as needed.
Only some preparations can be given IV. Use D5W to dilute. Well tolerated SC.
Antihistamines
Act on CTZ, vestibular system, and peripheral cholinergic receptors. Also useful for motion
sickness, and to prevent or control extrapyramidal adverse effects of metoclopramide, haloperidol,
and phenothiazines. May cause anticholinergic side-effects, sedation. May cause confusion and
delirium in elderly patients.
Dimenhydrinate - A: 25-50 mg PO/IV/IM q6-8hours max 300 mg/day, C: 2-5yrs=12.5-25 mg q6-
8hours max=75mg/day, 6-12yrs=25-50 mg q6-8hours max 150 mg/day.
Diphenhydramine – 0.5 mg/kg/dose PO q6-8hours to a max of 300 mg/day.SC/IV/IM =PO.
Hydroxyzine - 0.5 mg/kg/dose q 6-8hours. Max of 300 mg/d. SC/lV/IM = PO. More sedating at
higher doses. Skin irritation when given SC.
Meclizine - > 12yrs and Adults: 12.5-25 mg tid-qid PO
Promethazine - 0.25- 1 mg/kg q 4 hours. IV/IM/PO/PR. Can cause dystonia (phenothiazine
derivative)
Benzodiazepines
Benzodiazepines do not have intrinsic antiemetic activity. They are valuable adjuncts to other
antiemetics; and in the prevention and treatment of anxiety and anticipatory N&V. They act on
higher CNS structures, the brainstem, and spinal cord, and produce anxiolytic, sedative, and
anterograde amnesic effects. They markedly decrease the severity of EPRs associated with
dopaminergic receptor antagonists.
Diazepam – A: 2-10 mg C: 0.05—0.2 mg/kg/dose PO q 6 hours. <5 years: max = 5 mg/dose; > 5
years: max = 10 mg/dose. Helpful for anticipatory nausea and vomiting Diazepam stings IV: dilute
and use large vein if possible.
Lorazepam – A: 1-10 mg C: 0.03—0.05 mg/kg/dose PO/IV/SL q 6 hours to max of 4 mg/dose.
Corticosteroids
Steroids are often used in antiemetic drug combinations. Antiemetic mechanism of action is not
well understood; they may affect prostaglandin activity in the brain. Steroids decrease or eliminate
N&V, improve patients’ mood, and produce a subjective sense of well-being or euphoria (but they
can also cause depression, anxiety, and agitation). Also useful for increased intracranial pressure,
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GI obstruction, and hypercalcemia. Steroids may decrease adverse effects of high-dose
metoclopramide, such as diarrhea. Beware of long-term side effects.
Dexamethasone – A: 6-10 mg C: 0.1-0.2 mg/kg loading dose, then A: 2- 4 mg C: 0.05- 0.1 mg/kg
bid- qid for maintenanceSC/lV/IM/PO. Helpful with hepatic capsular distension, anorexia, increased
intracranial pressure. Well tolerated SC.
Prednisone - 1.5 mg dexamethasone = 10mg prednisone; A: 40-60 mg C: 0.6- 1.5 mg/kg loading
dose, then A: 15- 30 mg C: 0.3- 0.6 mg/kg bid- qid PO
Cannabinoids
Cannabinoids target higher CNS structures to prevent nausea and vomiting. Dronabinol (delta-9-
tetrahydrocannabinol) is one of the psychoactive substances present in crude marijuana. Can
cause dysphoria, drowsiness, sedation, dry mouth, hypotension, or hallucinations. Avoid or use
very carefully in geriatric patients, and patients with cardiovascular or psychiatric illness.
Dronabinol - A: 2.5 mg qd-bid to max of 20 mg/d.; also given 5 to 15 mg/m2 PO 1 to 3 hours before
chemotherapy, then every 2 to 4 hours for up to 6 doses/day.
AntichoIinergics
These agents decrease retrograde GI motility, increase gastroesophageal sphincter tone, and
decrease the activation of the vomiting center. May cause dry mouth, blurred vision, and
sometimes confusion. Useful for colic due to bowel obstruction.
Hyoscine butylbromide – A:10—20 mg, C:5—15 mg, PO TID-QID; Or A: 20 mg C:2.5—5 mg
IV/IM/SC for acute and severe cases TID-QID
Scopolamine HBr - Transdermal preparation—1.5 mg patch delivers 0.5mg over 3 days.
A: 0.3-0.65mg, C: 0.006 mg/kg max 0.3 mg, q 6 hours IV/IM/SC. Also used for motion/movement-
related N&V.
Notes: Dose can be titrated to relief or side effect. Agents can be given on pm or scheduled basis.
Management Guide
• Treat prophylactically if needed. Give medications around the clock, or on a schedule.
• Choose the appropriate agent/s based on potency, age, underlying cause/s, cost, co-morbid
conditions, ongoing medications, and other facors.
• More potent agents: selective 5HT3 antagonists, high dose metoclopramide and domperidone,
butyrophenones; Less potent agents: phenothiazines, cannabinoids, benzodiazepines
• Regularly assess for degree of response to treatment, and for treatment side effects
• Identify the cause of N/V, and manage accordingly.
• Severe N/V is usually mediated by 2 or more mechanisms. A combination drug regimen that
addresses different mechanisms may be more effective than a single drug regimen.
• Know the bioavailability of the drug preparation used. Oral and rectal bioavailability may be high
or low, and doses may need to be adjusted.
• Titrate the dose adequately before changing to a different agent, due to poor response.
• Oral agents easy, inexpensive, and simple to use for mild to moderate N/V.
• Parenteral agents are used for patients who cannot take oral agents (eg uncontrolled N/V, GI
obstruction, altered mental status)
• Rectal or vaginal administration of appropriate oral or supposity agents may be used. These are
less painful than repeated IM/SC injections.
• Continuous IV/SC infusion of appropriate agents (eg metoclopramide, haloperidol) may be
useful for severe N/V in terminally ill patients.
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A Simple Regimen for Chronic Nausea
• Start with prokinetics metoclopramide or domperidone around the clock QID, plus rescue
doses. If domperidone is not effective, use metoclopramide for better effect on the CTZ.
• If not relieved by intermittent prokinetics, or if nausea is severe, then add dexamethasone twice
a day. If N/V is due to opioids then consider switching to haloperidol (can also be added to
metoclopramide, but the risk of EPRs increases- monitor closely and consider EPR
prophylaxis).
• If not relieved by intermittent metoclopramide or domperidone plus dexamethasone, consider a
5-HT3 (serotonin) antagonist +/- dexamethasone; or continuous infusion of metoclopramide (A:
60mg/day C: 1mg/kg/day) plus dexamethasone twice a day.
• If unable to take prokinetics (eg bowel obstruction), or any of the above medications, consider
other antiemetics that have not yet been used (eg phenothiazines, butyrophenones-
haloperidol, or antihistamines- diphenhydramine).
• Useful combinations may include: +/- prokinetic agent (metoclopramide, domperidone) +/-
dexamethasone +/- haloperidol +/- diphenhydramine +/- 5HT3 antagonist (ondansetron).
Managing Refractory Nausea

• Identify and treat reversible causes and precipitants (e.g., drug reaction, constipation, anxiety).
• Identify and treat bowel obstruction (see section on bowel obstruction). For N/V due to bowel
obstruction consider the following options: IV/SC opioid (for severe pain), haloperidol (for N/V),
anticholinergic (for N/V and colic); IV/SC dexamethasone; octreotide A: 100-300 mcg/day, C: 1-
10 mcg/kg/day, IV/SC, in divided bid bolus or continuous infusion.
• Add 1 or 2 other potent antiemetics from different classes (eg metoclopramide +hydroxyzine
+chlorpromazine; or metoclopramide +haloperidol +diphenhydramine) and titrate the dose as
needed until N/V is controlled or side effects occur.
• Use a continuous IV/SC infusion of 2 or more agents.
Oral Problems
Oral problems are common in palliative care patients. Among patients with advanced cancer, about
90% have dry mouth and 30% haveoral candidiasis. Almost half of chemotherapy patients develop
oral problems, and almost all head or neck radiotherapy patients develop oral mucositis.
Oral health requires an intact mucosa, normal saliva production, and an intact immune system.
Changes in any of these result in oral problems. Various causes lead to the following problems:
Dry mouth, Painful mouth, Excessive salivation, Malodorous mouth. These problems can have a
significant impact on the quality of life of the patient.
Prevention and Oral Care

• Brush teeth 2-3 times a day with a soft toothbrush and fluoride-containing toothpaste.
• Rinse the mouth frequently, especially after meals and before bedtime, with clean water or
0.9% sodium chloride. Sodium chloride solution can be made for each rinse by dissolving half a
teaspoon of salt in 250 ml water. Sodium bicarbonate (baking soda) solution can also be used
or added to the NaCl solution.
• Remove debris by gently brushing the tongue and mucosal surfaces. Foam sticks (foam
toothbrushes) can be used if gentle brushing causes pain or bleeding.
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• Gently floss once a day.
• Remove dentures at night. Clean after meals with a soft toothbrush and toothpaste. Soak
regular dentures overnight in a sodium hypochlorite solution. Soak metal dentures in
chlorhexidine solution. Soak in nystatin solution if there is oral candidiasis. Rinse before use.
Avoid wearing dentures if there is ongoing mucositis.
• Increase the frequency of oral cleaning if: there is a high risk of oral problems developing; or an
oral problem has developed. Clean and rinse with water +/- salt +/- sodium bicarbonate as often
as every 2-3 hrs for patients with active oral problems or patients at risk of mucositis; and 1-2
hrs for patients with severe oral problems or those at very high risk of developing oral problems
(e.g. patients on oxygen therapy, mouth breathers, or unconscious patients).
• Topical antimicrobial solutions (eg chlorhexidine oral solution, povidone iodine oral solution)
may be used, especially for periodontal disease.
Common Oral Problems in Palliative Care
Mucositis / Stomatitis
• Ulceration with diffuse erythema and pseudomembrane formation usually following
chemotherapy/radiotherapy. Mucositis occurs about 5-7 days after chemotherapy
administration, or about 2 weeks after starting radiotherapy (due to the 2-week renewal rate of
oral mucosa). Chemotherapeutic drugs that commonly cause mucositis include: 5-fluorouracil,
methotrexate, bleomycin, and doxorubicin. Other underlying factors: xerostomia; bacterial,
yeast, or herpesvirus infection.
• There is no specific treatment for oral mucositis. However, it is self-limiting and usually heals
within 2-3 weeks of the end of radiotherapy or chemotherapy. Severe mucositis may limit the
patient's ability to tolerate chemotherapy or radiotherapy.
• Staging System: Stage I (pain); Stage II (ulcers, but can eat solids); Stage III (ulcers, can only
take liquids).
• Management
-- Frequently rinse mouth (q 1-2 hrs) with sodium chloride (salt) solution, sodium bicarbonate
(baking soda) solution, or a mixture of both.
-- Provide pain control and oral care. Avoid food that may worsen pain, e.g. hot or hard food.
-- Treat infections (e.g. bacterial, yeast, herpesvirus infections). Avoid alcohol and smoking.
Cold drinks. Sucking on popsicles or ice chips. Good oral hygiene.
Topical Interventions
Use a step-wise approach, starting with regular solutions; or a combination of different agents.
Rinse mouth with regular solution thoroughly to remove debris, saliva, and secretions prior to
using before using other agents and combinations of agents.
-- Regular Solutions
Sodium Chloride (salt) Solution (1 tsp table salt in 32 oz water),
Sodium bicarbonate (baking soda) solution (2 tbsp baking soda in 32 oz water)
Na chloride/Na bicarbonate mixture (1/2 tsp table salt + 2 tbsp baking soda in 32 oz water)
-- Mucosal Coating Agents
Milk of Magnesia, Aluminum-Magnesium Hydroxide (Maalox), Kaolin-Pectin
Sucralfate
-- Water Soluble Lubricants
Artificial Saliva
-- Topical Anesthetics
Diphenhydramine, Lidocaine, Benzocaine, Dyclonine
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• -- Cellulose-Film Forming Agents
Hydroxypropyl cellulose
Examples of Combinations of Agents (Berger and Kilroy, 2001)
Rinse using 10-15 ml of one of the following combinations 4-6 times a day.
Diphenhydramine and Maalox +/- Lidocaine +/- Sorbitol
Combine Diphenhydramine 30 ml of (12.5mg/5ml), Maalox 30 ml +/- viscous Lidocaine
30ml +/- Sorbitol. Rinse 10-15 ml 4-6 times a day.
Sucralfate +/- Maalox +/- Lidocaine or Diphenhydramine
Same amounts as above and mix Sucralfate 1 g with every 10-15 ml solution.
Diphenhydramine + Lidocaine + Tetracycline or Penicillin + Hydrocortisone/ Steroid
Same amount for Diphenhydramine and Lidocaine, and add Tetracycline or Penicillin
60 ml of (125mg/5ml) solution, and Hydrocortisone (or prednisone/prednisolone) 30 ml of
(5-10mg/5ml) solution, and sterile water 45 ml.
Diphenhydramine + Maalox + Nystatin
Same amount of Diphenhydramine and Maalox as above, and Nystatin 30 ml of
(100,000 unit/ ml) solution
• Systemic analgesics (eg tramadol, oxycodone, morphine) are used for severe pain.
Herpes Simplex
• Appears as vesicles that eventually rupture and form ulcers with irregular borders with swollen
red margins and grayish centers. Preceding vesicles may occur on lips. Seen in
immunocompromised patients, and patients receiving chemotherapy. Common in patients with
lymphoma.
• Management
Consider oral antiviral medication: Acyclovir (A: 400 mg C: 200 mg 5 times a day); Famciclovir
(A: 500 mg PO bid); Valacyclovir (A: 500 mg PO bid). Treat for 7-10 days.
Aphtous Ulcer
• Ulcers round or oval with yellowish base. Not easily removed. Less than 5 in number.
• The cause is unclear. Predisposing factors may include immunodeficiency; local trauma (e.g.
caused by excessive tooth brushing); dietary deficiency of iron, folate, vitamin B12, or zinc;
stress; and smoking cessation.The underlying cause cannot be determined in most cases.
• Management
-- Correct any underlying iron, folate, or vitamin B12 deficiency.
-- Oral Rinses with regular solutions or combinations (see section on mucositis).
-- Chlorhexidine mouthwash may reduce duration and severity. Do not use at the same time as
nystatin because it reduces the activity of nystatin.
-- Topical steroids can be tried (triamcinolone oral paste or hydrocortisone preparations) to
reduce the duration of ulcers and hasten pain relief without causing notable local or systemic
adverse reactions.
-- Tetracycline or doxycycline mouthwash has been used for severe recurrent problem.
Although this may reduce the duration and severity of ulcers, it may cause oral candidiasis and
a burning-like sensation of the pharynx. The contents of a tetracycline (250mg) or doxycycline
capsule (100mg) are dispersed in water and rinsed around the mouth for 2-3 minutes, four
times a day.
-- Sucralfate suspension 5 mL swish and swallow 3-4 times daily
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Neutropenic Ulcer
• Similar to aphtous ulcers. Complicates severe neutropenia (neutrophil count <100 mm3).
Commonly seen in acute leukemia.
• Management
Similar to aphtous ulcer; but recovery of the neutrophil count is essential for healing.
Local Tumor
• Local tumors can present with ulceration, slough, bleeding, and malodor.
• Management
Provide regular oral care, and pain control. Antibiotics or antifungals for infection. Metronidazole
for malodor caused by anaerobic bacteria.
Oral Candidiasis
• Localized areas of erythema and associated white plaques that are easily removed.
• Occurs in 10-20% of patients; and may affect as many as 80-90% of patients nearing death.
• Risk factors include: antibiotics, corticosteroids, chemotherapy, radiotherapy, and smoking.
• Trush or Acute pseudomembranous form: most common oral candidiasis; presents with
painless (occasionally painful) white plaques/ flecks/strands on the tongue and mucosal
surfaces. Plaques are commonly seen on the buccal mucosa, tongue, and gums; they may also
occur on the palate, fauces, uvula, and tonsils. The plaques may coalesce, and may cover the
entire oral cavity. They can be wiped off to reveal an erythematous base that may bleed.
• Acute atrophic form: there are no plaques, but there is nonspecific erythema and atrophy of
the tongue and/ or buccal mucosa. This may follow therapy with oral antibiotics or oral
corticosteroids.
• Chronic atrophic form: as many as 60-70% of denture wearers may develop an area of
chronic erythema and edema under the upper dentures. The mucosal surface under the lower
dentures is rarely affected.
• Management
Management of predisposing factors
Dry mouth, Poor diabetic control, Poor denture hygiene. corticosteroid therapy (oral, inhaled,
and topical)
Prevention
Good oral care. Prophylaxis using topical or systemic medications, especially in severe
mucositis, or chemo/ radiotherapy- induced mucositis.
Topical treatments
Use Nystatin oral suspension (5-10 ml, swish and swallow, qid); or Clotrimazole troche (10 mg
4-5 times a day). Oral Amphoterecin B solution (5-10 ml of 0.1 mg/ml solution, swish and spit) is
used for cases which are refractory to other topical or systemic medications.
Amphotericin and nystatin are not systemically absorbed, so it is important that they are held in
the mouth for as long as possible before swallowing. Avoiding eating or drinking for 30 minutes
after each dose to increase contact time with the mucosa. Nystatin is inactivated by
chlorhexidine mouthwashes; do not use within 30 minutes of each other.
Systemic treatments
Use for when infection is severe or widespread.
Use Fluconazole, Ketoconazole, or Itraconazole for 1 to 2 weeks.
Fluconazole (A: 50-150 mg C: 1-3 mg/kg, PO, qday).
Ketoconazole (A: 100-200 mg C: 2.5-5 mg/kg, PO, bid); monitor liver function, and use with
care because of rare reports of liver damage.
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Itraconazole (A: 100 mg C: 1-2 mg/kg, PO, qd-bid); use it with care for people with heart failure.
Risk is higher in the elderly, those with cardiac disease, and those on negative inotropic drugs
(e.g. calcium-channel blockers).
Ill-Fitting dentures
• Localized erythema of surfaces in contact with dentures.
• Management
Pain control. Dental management. Reline loose dentures.
Periodontal Disease
• Periodontal inflammation and infection.
• Management
Pain control. Antibiotics. Oral care. Dental management.
Dry Mouth and Xerostomia

• Xerostomia (subjective sensation of mouth dryness) and actual dry mouth can be due to:
decreased salivation (eg radiotherapy, drugs, salivary gland diseases, hypothyroidism),
dehydration, mucosal erosion (due to infection, cancer, mucositis). Mood problems (eg
depression, anxiety) can also cause xerostomia.
• Common causes of dry mouth in palliative care patients
Dehydration: Poor fluid intake/ poor urine output, Reduced skin turgor
Drugs (e.g. antihistamines, anticholinergics and opioids): Reduced salivary production
Mouth breathing: More common with consciousness impaired, Nasal obstruction
Radiotherapy of head and neck: Reduced salivary production
Head and Neck Surgery: Reduced salivary production
Anxiety: Intermittent and associated with psychological symptoms
• Management
-- Treat the underlying cause/s if possible.
-- Good oral care q 2-3 hrs.
-- Adequate hydration.
-- Ice chips. Sucking ice cubes or hard candies. Chewing sugarless gum. Petroleum jelly or lip
balm to dry lips. Artificial saliva preparations.
-- If dryness is due to a medication. If possible, reduce the dose or change the medication
(e.g., use metoclopramide or haloperidol instead of prochlorperazine or chlorpromazine; use
SSRI or trazodone instead of amitriptyline).
-- If dryness is due to reduced salivary production (eg post-radiotherapy, surgery), use
Pilocarpine 5 mg tid and/or artificial saliva q 1-2 hrs. For pilocarpine, monitor for increased
sweating, respiratory secretions or diarrhea; and avoid using pilocarpine in patients with asthma/
bronchospasm, and bradyarrhythmia. Acupuncture may also help.
-- If dryness is due to dehydration, increase liquid intake by mouth if possible. To moisten
mouth, try sips of water, ice chips, atomizer, or spray. As death approaches, encourage family
members to keep the patient’s mouth moist with a few drops of water from a syringe or a moist
sponge stick; this gets them involved in the patient’s care and relieves dry mouth. In selected
patients, consider gentle (approx 1 L/d) rehydration with D51/2 normal saline by IV or SC
infusion.
Halitosis
• Halitosis or malodorous breath can be caused by: oral problems, upper and lower respiratory
tract infections, upper and lower GI problems (eg gastric or colonic stasis, dyspepsia), diabetic
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ketoacidosis (acetone breath), kidney failure (fishy, uremic breath), liver failure (musty,
ammonia odor), food (garlic, onion, meat, fish), drugs, and other factors. Halitosis may worsen
social isolation and cause distress. Very malodorous breath (“sewer breath”) is usually due to
anaerobic organisms in: necrotic oral or pharyngeal tumors, lung abcess or anerobic infections,
and colonic obstruction.
• Management
Treat the infections and other underlying cause/s if possible. Adequate hydration. Good oral
care. May use normal saline for normal oral mucosa; bicarbonate rinses (2 tsp na bicarbonate
to 1li water or saline) for thick mucus/ discharge; or peroxide rinses (1 part 2-3% peroxide to 4
parts water) to clear debris. Regular chlorhexidine rinses. Gentle cleaning of tounge which traps
food and bacteria (be careful not to cause gagging)- may also use peroxide rinse for tounge.
Dietary modification if food is a cause (eg avoid garlic, onions). Dental care; disinfect dentures
regularly.
• Malodor in oral cancers
Common in oral cancers. Blood supply to the tumor is often impaired, resulting in hypoxic or
necrotic tissues. These become infected with anaerobic bacteria, which release malodorous by-
products. Management involves effective wound cleansing using regular mouth care, and use of
systemic agents against anaerobic organisms, eg metronidazole (A: 500-750 mg C: 10-15
mg/kg, PO, bid). Treatment may need to be continued over the long term, as the odor usually
returns when treatment is stopped. Resistance to metronidazole is unlikely to develop.
Sialorrhea
• Sialorrhea or excessive salivation can cause discomfort, embarrassment, and irritation of the
lips and chin. It is worse if the patient also has difficulty swallowing.
• Common causes include oral pain (e.g. from aphthous ulcers), local irritation from badly fitting
dentures, or drugs (e.g. lithium, cholinesterase inhibitors, and cholirergic/ muscarinic agonists
such as pilocarpine). Dysphagia may cause problems with excessive salivation because the
saliva cannot be removed by swallowing.
• Management
Treat the underlying cause/s. Symptomatic treatment with anticholinergic drugs, e.g.
scopolamine or hyoscine hydrobromide (A: 300 mcg C: 6 mcg/kg PO/SL/IM/IV every 6-12 hours
or patches if available), and hyoscine butylbromide (A: 10 mg C: 0.2 mg/kg PO tid-qid). Or use
drugs with anticholinergic side effects if the patient has other co-morbidities that warrant their
use, e.g. consider amitriptyline if the patient also has depression or neuropathic pain.
Altered Taste
• Patients may complain of having an abnormal taste sensation (dysgeusia), reduction in taste
(hypogeusia) or no taste (ageusia). Causes include: various oral problems (candidiasis,
xerostomia, mucositis, poor oral hygiene), smoking, dental problems, metabolic problems (eg
kidney failure, diabetes, adrenal insufficiency), radiotherapy, cancer (eg oral cavity, affecting
cranial nerve VII, or brainstem), nutritional deficiencies (eg zinc), and medications (eg
chemotherapy, phenytoin, levodopa). Head and neck radiotherapy can cause taste alteration
which partly resolves in 1-2 months; and completely resolves in 2-4 months. Decreased taste
and enjoyment of eating, and/or altered and unpleasant taste, can affect quality of life; as well
as cause nutritional problems.
• Management
Treat the underlying cause/s if possible. Determine dietary preferences, what tastes good and
what does not? If sensitive to bitterness (urea), then reduce urea content of diet (eat more white
meat and eggs, and less red meat), mask the bitter taste by marinating or cooking with wine.
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Drink more liquids with meals. Adjust food to overcome lack of taste. If taste is decreased use
more seasonings and/or marinating meats. Good oral care and hygiene.
Oral Bleeding
• Due to oral tumor, severe mucositis/ ulceration, gingivitis, trauma to tissues, platelet and other
bleeding disorders.
• Management
-- Correct any reversible cause/s (eg thrombocytopenia, gingivitis, discontinue NSAIDs).
-- Discontinue mechanical oral care (etc brushing); and use gentle care (eg rinses) instead.
-- Tranexamic Acid (A: 1000-1500 mg C: 20-25 mg/kg, PO, tid-qid, for 2-7 days; or (A: 500 mg
C: 10 mg/kg, IV, tid-qid, for 2-7 days).
-- Topical agents that can also be used (eg thrombin solution).
Oral Pain
• Treat the underlying cause if possible.
• Symptomatic management may require topical and/or systemic interventions.
• Topical treatment is preferred to systemic treatment due to the lower incidence of side effects.
Some drugs have both topical and systemic actions, e.g. dispersible diclofenac.
• Systemic analgesics are used when topical agents are unable to control the pain.
• Avoid or be careful in using NSAIDs if there is severe mucositis, or a significant risk for
ulceration or bleeding.
Localized pain
• Topical local anaesthetics containing lidocaine or benzocaine can be used for severe pain.
Their duration of action may be short, and will not provide continuous analgesia throughout the
day. Be careful not to anesthetize the pharynx before meals, increasing the risk of aspiration or
choking.
Diffuse oral pain
• Use topical anesthetics. Add a systemic analgesic (eg paracetamol, NSAIDs, tramadol,
oxycodone, morphine) if pain is not adequately controlled by topical agents. Avoid NSAIDs in
patients who have or at risk of developing severe mucositis, oral ulcer/s, gastritis, gastric ulcers,
and bleeding (eg due to platelet and other bleeding problems, bleeding oral tumors).
Systemic treatment of oral pain
• The choice of systemic analgesic agent will depend on the severity of pain, and the benefits
versus risks for the individual patient.
• Mild pain: nonsteroidal anti-inflammatory drug (NSAID) or paracetamol.
• Mild to moderate pain: full dose weak opioid (eg tramadol) plus paracetamol or NSAID.
• Moderate to severe pain: oxycodone or morphine plus paracetamol or NSAID.
• Oral route is preferred where possible, but if the patient is unable to take the oral agents, eat or
drink (e.g. due to mucositis) consider using rectal, transdermal, an intermittent parenteral
agents, or a 24-hour continuous SC/IV infusion.
Oral care in the terminal phase

• Patients in the final days of life often have difficulty taking food, fluid, or oral medication. Good
palliative care may allow the dying person to eat, drink, and talk comfortably. During the
terminal phase, the goal of feeding and drinking is to relieve thirst and hunger, and to prevent
patient/ family distress.
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• The symptoms of dry mouth and thirst are very common in dying patients whether they are
dehydrated or not. Reversing dehydration may only improve symptoms in a very limited number
of patients nearing death.
• Oral rinses and gentle oral care as often as needed to maintain a comfort.
• Provide frequent mouth care as often as necessary to maintain a clean mouth. This can be
carried out by the family, giving them greater involvement in the care of their dying relative.
• In unconscious patients, or patients who have difficulty swallowing, clean and moisten the
mouth gently using foam sticks, soaked with water/ NaCl or Na bicarbonate solution.
• Manage pain with analgesics given through an appropriate route. Stop treatment of the
underlying cause of pain when the burden of treatment outweighs the benefits.
Pressure Ulcers, Wounds, and Fistulas
Pressure Ulcers
Pressure ulcers or pressure sores are skin damages due to extrinsic pressure, shearing forces and
friction. It occurs in as many as 20% of palliative care patients. Common sites affected are the:
ears, knees, ankle, knees, elbows, and sacrum.
Appropriate Skin Care

Appropriate skin care is important in palliative care to prevent pressure ulcers and other skin
problems.
● Mechanical loading and appropriate support surface.
● For bed-bound patients:
Reposition at least q2-3 hours if possible and appropriate.
Use pillows or foam wedges to keep bony prominences from direct contact.
Use devices that relieve pressure on elbows and heels (eg elbow and heel pads).
Consider devices such as sheepskin mats, urethane foam, pillows, and bed cradles.
Avoid positioning directly on the trochanter.
Elevate the head of the bed as little as possible depending on the patient’s other medical
problems.
Lift (consider lifting devices) to move rather than drag patients during transfers
Use pressure-reducing mattress (there are various products available such as an egg-crate
mattress, water bed, and air matress; but if cost is prohibitive, an inflatable mattress that is
filled with water instead of air can also been used)
● If the patient is able, try to get the patient out of bed as much as possible. For example, sitting
the patient on a chair 2-4 times a day.
● Avoid prolonged sitting on a chair or wheelchair for more than 1-2 hours.
● Provide proper skin care and early management.
● Inspect skin regularly. Do a comprehensive inspection at least once a day.
● Avoid skin dryness, trauma; individualize bathing schedule, use moisturizers for dry skin.
● Use mild soaps, adequately pat dry, gently massage skin moisturizers.
● Consider petroleum jelly or similar products on pressure areas and bony prominences, including
elbows and heels.
● Keep intertriginous areas dry.
● Avoid skin trauma – eg from carrying or moving the patient, restraints, tapes, and others.
● Minimize environmental factors: e.g. low humidity and cold air.
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● Change bed and pillow covers regularly.
Asssessment
● Characterize and stage the pressure ulcer. Monitor regularly. The margins and depth of the
wound should be explored. If the wound tracks down to bone osteomyeltis is likely.
● Remove eschar by sharp debridement or with topical enzymatic agents. Exposure of granulation
tissue facilitates healing.
● Assess the vascular supply of affected extremities. Examine the peripheral pulses, capillary refill,
coloration, and temperature. Arterial Doppler studies noninvasively assess for peripheral vascular
disease.
● Swab cultures of the wound surface often do not accurately identity causative organisms
because the wound is often colonized with numerous organisms. For infected wounds, cultures can
be useful for determining sensitivity.
● Assess nutritional status, including serum albumin. Manage nutritional problems appropriately.
STAGING OF PRESSURE ULCERS

Stage 1 Nonblanchable erythema of intact skin. Warmth, edema, induration, or hardness.
Stage 2 Partial thickness skin loss involving the epidermis and or dermis. Superficial ulcer,
abrasion, blister, or shallow crater.
Stage 3 Full-thickness skin loss involving damage to or necrosis of subcutaneous tissue that
may extend down to, but not through, underlying fascia.
Stage 4 Full-thickness skin loss with extensive destruction, tissue necrosis, or damage to
muscle, bone, or supporting structures (tendons, joint capsule).
Management
The general principles are pressure reduction, control of infection, debridement, dressings, and
nutritional support.
● Pressure reduction is very important. Good circulation and blood supply is needed for healing.
Bed-bound patients should he turned at least every 2 hrs. Use a soft foam or air mattress
especially for immobile patients or those with large or multiple ulcers. Simple measures include
pillows placed beneath calves and foam foot protection. Cushioning should be provided at bony
prominences (between heels and knees or under trochanters). Patients should be scheduled to be
out of bed as much as possible.
● Debridement: Debridement is the removal of debris and necrotic tissue. Stage II ulcers with a
small amount of superficial necrotic tissue can be gently debrided mechanically with coarse mesh
gauze moistened with saline, hydrocolloid dressings, or enzymatic debriding agents. Stage III or IV
ulcers are usually debrided surgically. Surgical and sharp debridement is the quickest method of
debridement; it requires adequate analgesia and/or anesthesia, and can result in significant
bleeding if the area in vascular areas. Mechanical debridement is the mechanical (physical)
removal of debris and necrotic tissue. Coarse mesh gauze moistened with saline (wet-to-moist
dressing) should be used carefully to avoid significant pain, bleeding, and normal tissue damage
upon removal; dressing changes should be done before the dressing is completely dry and
adequate analgesia should be provided if needed. Enzymatic debridement uses enzymes (eg
collagenases, fibrinolytics, proteolytics) for debridement. Autolytic debridement uses special
dressings to create an environment for debridement using the body’s own enzymes and phagocytic
cells. Biological debridement (eg larvae therapy) uses organisms to digest debris and necrotic
tissue.
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● Clean, moist environment: It is important to maintain a clean, moist wound environment to
allow for optimal granulation and reepithelialization. A routinely changed wet-to-dry dressing can be
used for dry, noninfected wounds. Excessive moisture can be managed with absorbent dressings
(alginates) and reducing urinary and fecal incontinence. Scheduled toileting may help reduce
soiling of involved areas. Foley catheters should be the last resort to keeping the environment
clean. The dressing needs to control the wound, drainage and odor but must be comfortable and
manageable for the patient, and must be easy to remove without added discomfort. For simple
wounds, dressings can be easy and cost effective. However, if the wound deteriorates, it should be
constantly re-assessment and the management approach changed appropriately.
● Antibiotics: Topical antibiotic creams are generally not used for routine wound care, unless the
area is infected or nonhealing. Systemic antibiotics are used for cellulitis, osteomyelitis, abscesses,
and bacteremia, and sepsis.
● Adequate nutrition is needed for normal wound healing. Manage malnutrition. Protein or caloric
supplementation may be indicated. There are some data to suggest vitamin C and zinc
supplements may be helpful.
● Odor: Malodor can be very distressing. Identify and manage the possible sources of malodor,
which includes: necrotic tissue, infected tissue, and saturated dressings. Consider more frequent
dressing changes, air freshener, activated charcoal, deodorizer, topical or systemic metronidazole,
charcoal impregnated dressing, and honey or sugar applied topically (reduce smell and are
bacteriostatic). Consider an exhaust fan or outward facing fan to blow air out the window.
● Pain control: Provide adequate pain control. Consider administering an analgesic dose prior to
painful dressing changes.
● Surgical closure of the wound or ulcer (particularly stage 3 and 4 ulcers) may be needed for
wounds or ulcers that do not respond to other measures.
Types of Dressings
Types of dressings include: gauze, films, foams, hydrocolloids, hydrogels, and alginate.
● Films (eg Tegaderm) are semipermeable, occlusive dressings that cannot absorb exudates.
They can be used for stage I pressure sores and pressure burns.
● Hydrocolloids (eg Duoderm) are occlusive dressings that absorb exudates and facilitate
autolysis of debris and eschar. They can be used when skin loss has occurred, stage II-IV.
● Hydrogels absorb large amounts of exudates, and facilitates removal of discharge and necrotic
tissue. They are useful for infected skin ulceration and for cavities. They are usually covered by a
top dressing using a film (eg tegaderm). Hydrocolloids and hydrogels cover the wound bed and
provide a surface on which epithelial cells can migrate.
● Alginates are derived from seaweed, and are very absorbent and hemostatic. They are helpful
in exudative wounds and cavities.
● Foams are also very absorbent and are good for exudative wounds and deep cavities.
● Low adherent dressings can protect the wound surface and absorb some exudates.
Cellulitis
Cellulitis may he difficult to diagnose because the ulcers will often have reactive hyperemia and
ervthema associated with normal healing. Consider if there is fever, enlarging ulcer, foul odor, and
purulent drainage. Common antibiotic regimens include: co-amoxiclav, clindamycin, oxacillin,
cefazolin +/- ciprofloxacin, +/- metronidazole.
Osteomyelitis
Consider osteomyelitis when ulcers are clinically infected or nonhealing. Osteomyelitis has been
detected in the bone underlying 26% of non-healing ulcers. Wound or tissue discharge GC/CS,
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imaging studies such as Xray/CT, may helpful in the diagnosis. An elevated ESR or CRP can
suggest osteomyelitis but is a nonspecific test. Broad coverage is usually needed. Common
antibiotic regimens include: ciprofloxacin + metronidazole +/- co-amoxiclav; (oxacillin or or
cefazolin or vancomycin IV) + (ceftazidime or ciprofloxacin).
Draining External Fistulas

An external fistula is an abnormal communication between the skin and a hollow organ. Based on
the volume of fluid output fistulas can be: low output (<200 ml/day); moderate output (200-500
ml/day); and high output (>500 ml/day). Fistulas can be due to the disease/cancer itself, and/or
treatment/s (eg surgery, radiotherapy). Complications include: infection, dehydration, electrolyte
abnormalities, skin problems, bleeding, nutritional loss, and psychosocial problems.
Management
Regularly clean the affected area and surrounding skin which are prone to breaking down. Irrigate
with water and disinfectant (eg hydrogen peroxide solution) 4 or more times a day. For perineal
fistulas, clean the area regularly with mild soap and water, and pat dry. Steroid creams can be
used for episodes of inflammation. Topical or systemic antibiotics may be needed for infection. For
malodor, use antibiotics for anaerobic bacteria (eg metronidazole A: 400-500 mg C: 8-10 mg/kg PO
tid). Special dressings and/or protective sprays that allow air but not fluids to reach the skin can are
also useful. Pouches or drainage bags can be used for fluid secretions. Enterocutaneous fistulas
can be managed with colostomy and ileostomy bags. Monitor for and manage nutritional deficits,
dehydration, and electrolyte abnormalities- especially in high output fistulas. Antisecretory
medications (eg hyoscine butylbromide A: 10-20 mg C: 0.1-0.2 mg/kg PO/IV/SC/IM tid-qid;
octreotide A: 300 mcg C: 4-6 mcg/kg, 24hr infusion) may be needed for high-output fistulas.
Symptom management may require antiemetics, antispasmodics, analgesics, and others. Surgical
management includes: fistula resection, fistula repair and corrective procedures, and diversion
procedures. Intestinal and urinary tract fistulas can be very distressing; and a surgical procedure
may be appropriate- particularly in patients with longer life expectancies.
Fungating, Necrotic Tumor Masses

An ulcerated, necrotic, malodorous and/or fungating mass on the skin can cause distress to patient
and family. The goal is to keep the exposed growth clean and odor-free while avoiding the
development of infection and hemorrhage. Consider local or systemic antitumor therapy in the form
of excision, electrocoagulation, radiotherapy, or chemotherapy. A large mass that can invade
overlying skin and cause skin breakdown can be irradiated. Palliative chemotherapy or
radiotherapy may cause tumor regression. Radiotherapy may also promote healing, and help
control bleeding. If palliative surgery (eg mastectomy, amputation) is an option, the benefit and
burden of the surgical procedure/s should be weighed carefully.
Management
Cleanse thoroughly with sterile saline. Perform adequate debridement. Choose an appropriate
dressing. Provide adequate pain control, especially during dressing changes.
Management of odor: The necrotic tumor center releases malodorous polyamines which adhere to
almost any surface. Anaerobic infections also cause significant malodor. Family, friends, and even
caregivers may find it difficult to visit and stay in the room with the patient; the patient becomes
isolated and social support decreases. Frequent changes of absorbent, non-adhesive dressing can
help. Keep normal skin clean and tumor mass covered. Irrigate frequently with hydrogen peroxide
cleaning solution and other mild oxidizing agents. For malodor, consider air freshener, activated
charcoal, deodorizer, topical or systemic metronidazole, charcoal impregnated dressing, and honey
or sugar applied topically (reduce smell and are bacteriostatic). Consider a room withan exhaust
fan or outward facing fan to blow air out the window. Caregivers and visitors can continue to care
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for, support, and visit the patient while they wear disposable protective gowns and gloves until
polyamines and and other malodorous substances are controlled. Metronidazole (A: 250-500 mg
C: 5-10 mg/kg PO qid) may help particularly with anaerobic bacterial infection. Clindamycin (A:
150-300 mg C: 3-4 mg/kg PO qid, not more than 10 days) can also be used instead of
metronidazole. Other methods used by some include the topical application of: honey, powdered
sugar, or yogurt.
Management of bleeding: A topical vasoconstrictor (eg epinephrine), calcium alginate, or a
hemostatic agent (eg topical thrombin) can decrease bleeding and oozing.
Pruritus
Pruritus (itch) is a common symptom encountered in palliative care. It is defined as an unpleasant
sensation that provokes a desire to scratch. Although itching is often seen as a minor social
disability, it can be as severe and intractable as to cause a great deal of discomfort and distress to
the person. A detailed history is the single most important step towards diagnosing the cause of
itching. There are a number of historical pointers; exceptions occasionally exist. Complications
include: excoriation, secondary skin infection, insomnia, interference with daily functioning,
interference with social interaction and social acceptability. Severe unresolved pruritus can lead to
psychosocial and mood problems such as depression and anxiety.
Common Causes
• Several skin diseases including: eczema, seborrheic dermatitis, psoriasis, dermatitis
herpetiformis, lichen planus, pityriasis, etc
• Allergic reactions: Contact dermatitis, drug allergy, urticaria, pollen, dust
• Infestations and Parasitosis: insect bites, nematodes, hookworm, pinworm
• Skin Infection: bacterial (eg impetigo, folliculitis), viral (exanthema, herpes simplex, varicella),
fungal (tinea capitis/ corporis/ pedis, candida)
• Dry Skin (xerosis)
• Cancer: lymphoma, leukemia, skin metastasis, paraneoplastic syndrome, carcinoma in situ (eg
anus, vulva)
• Liver disease: obstructive biliary disease (intrahepatic, extrahepatic); cholestasis
• Kidney disease: uremia (chronic kidney disease, kidney failure); hyperparathyroidism due to
kidney disease
• Endocrine and Metabolic problems: hypo/ hyperthyroidism, hyperparathyroidism, diabetes, gout
• Hematologic problems: polycythemia vera, iron deficiency anemia
• Sunburn, Miliaria (prickly heat)
Evaluation
History
• Acute vs Chronic Onset: Pruritus due to inflammatory skin diseases usually has an acute
onset. Pruritus due to systemic diseases is usually chronic and progressive.
• Generalized vs Localized: Primary skin diseases cause either localized or generalized
pruritus. Systemic diseases usually cause generalized pruritus. However, systemic diseases
may sometimes cause localized itching (eg scalp pruritus in diabetes).
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• Quality of Pruritus: Dermatitis herpetiformis may cause pruritus that has a burning quality. In
aquagenic pruritus and polycythemia, it has a prickling quality.
• Skin Eruption and Rash: A characteristic rash can help in the diagnosis, especially for primary
dermatological diseases. Pruritus due to dermatologic diseases can also present without a rash;
such as in mild urticaria or aquagenic pruritus, where the amount of histamine is enough for a
sensory (pruritus) but not a vascular response (rash). Determine if pruritus preceded the
appearance of a skin eruption. Severe itching leads to scratching that causes secondary skin
changes of excoriation, lichenification, dryness, eczematization and infection.
• Precipitating and Aggravating factors: Exercise, clothing contact, food, perfume, lotions,
cosmetics, cool temperature, various hair and topical preparations, and other factors.
• Exposure: Exposure to chemicals, allergens, and irritants at work or home may cause irritant or
allergic contact dermatitis and should be suspected, especially if there is a temporal relation.
• Drugs and other Products: Prescription, non-prescription (including supplements and
herbals), topical, and recreational drugs. Common drugs associated with pruritus include those
causing cholestasis (eg, chlorpropamide, phenothiazines (chlorpromazine), erythromycin
estolate, oral contraceptives, anabolic steroids, captopril, and trimethoprim-sulfamethoxazole);
drugs that cause histamine release (eg opioids, salicylates, vancomycin, radiocontrast agents),
antimalarials, and quinidine. Look for drugs that are related to the patient's list of drug allergies
(eg use of sulfonamide-based diuretics in patients with sulfonamide antibiotic allergy). Topical
allergies prevent the use of chemically related systemic drugs (eg avoid systemic doxepin in
those with topical doxepin allergy).
• Old Age: Persistent and generalized pruritus is common in the elderly. It’s usually due to dry
skindue to impaired ability of the skin to retain water. An warm, dry environment may worsen
dryness, leading to scaling and cracking of skin. Pruritus improves with emollients, and better
temperature and humidity.
• Medical History: Obstructive liver disease, kidney failure/ uremia, hyper/hypothyroidism,
hyperparathyroidism, diabetes, polycythemia vera.
• History of Cancer: In Hodgkin's disease pruritus usually affects the lower half of the body, is
burning in quality, and is usually more intense at night. Generalized pruritus may also occur in
leukemia, but is less intense than in Hodgkin's disease. Pruritus also occurs in cancers of the
lung, colon, breast, uterus and prostate, but the association between solid visceral tumors and
pruritus is less clear. The pruritus frequently remits when the cancer is treated and reappears
with relapse of the disease.
• History of HIV disease: Patients with HIV disease develop many skin diseases that cause
pruritus (eg scabies, pediculosis, candidiasis, drug eruptions and seborrhoeic dermatitis).
Eosinophilic folliculitis is a generalized pruritic, papular eruption which is often resistant to
topical steroids, but responsive to dapsone and ultraviolet B phototherapy.
• Psychosocial Problems: Pruritus should only be diagnosed as psychogenic when cutaneous
and systemic causes have been ruled out. Pruritus improves with psychosocial management,
antidepressant and anxiolytic drugs (eg doxepin and hydroxyzine).
• Personal and Family History: Determine any personal or family history of allergy (childhood
eczema, allergic rhinitis and asthma), pets, travel and sexual history (HIV disease).
• Pruritus at Night: Severe pruritus that awakens the patient from sleep is less likely to be
psychogenic. Pruritus due to Hodgkin’s disease and scabies is worse at night.
• Effect of Humidity: Pruritus due to dry skin and atopic eczema is often worse in areas where
there is low humidity which results in increased transepidermal water loss.
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• Effect of Bathing: Pruritus in polycythemia vera and aquagenic pruritus usually occurs after
bathing. Overbathing, frequent hot baths and excessive use of soap can worsen pruritus by
causing skin dryness, or lead to dermatitis.
Physical Examination
The skin should be examined thoroughly for evidence of any recognizable disorder. A
characteristic rash usually establishes the diagnosis of a primary dermatological disorder.
Scratching (causing excoriations) or rubbing (producing papules, nodules, and lichenified plaques)
may lead to secondary changes that may be misinterpreted as a primary skin disorder. Look for
evidence of parasitic infestation, especially scabies and lice. Look for excoriations of the web
spaces and groin in scabies; and of the back in pediculosis (lice). Examination of the skin, hair and
genitalia with surveillance scrapings may identify either disorder. Direct, reflected light may identify
nits of pubic and head lice. A complete physical examination is essential, including pelvic and
rectal examinations. Enlargement of the lymph nodes, liver and spleen are important to identify.
Pruritus of Undetermined Origin (PUO)

Itching lasting for greater than 3 weeks without an identifiable cause is pruritus of undetermined
origin (PUO). PUO and those patients with non-specific rashes present the greatest diagnostic
challenges.
Management
Specific Management
Identify and manage reversible causes, as well as aggravating and precipitating factors.
• Ultraviolet B phototherapy is effective in uremic pruritus and may help in other forms of pruritus
associated with prurigo nodularis, atopic dermatitis, HIV disease and aquagenic pruritus.
• UVB phototherapy, opioid antagonists, and/or 5HT3 blockers are used for uremic pruritus.
• Opioid antagonists, 5HT3 blockers, rifampicin, and cholestyramine are used for pruritus in
obstructive biliary disease. The most effective intervention for pruritus due to biliary cholestasis
is to relieve the biliary obstruction; this may include: surgery, chemotherapy, high-dose
dexamethasone, biliary stents, or external biliary drainage procedures.
• Steroids, H2 blockers, and/or 5HT3 blockers may be used for pruritus due to lymphoma.
• 5HT3 blockers are used for paraneoplastic pruritus.
• Control of elevated calcium and phosphorus levels (eg by parathyroidectomy) relieves pruritus
due to hyperparathyroidism.
• Controlling uric acid in gout relieves pruritus.
• Treat infestations, parasitosis, and infections.
• Correction of iron deficiency in polycythemia vera relieves pruritus.
Symptom Management
General Management
• Avoid frequent bathing (leads to dry skin especially if using hot water, and strong soap or
detergent), alcohol rubs, and rough fabrics such as wool. Use baby oil, moisturizing cream,
olive oil, lanolin, emollient cream, or petroleum jelly, especially after each bath.
• Especially in atopic dermatitis, the importance of breaking the itch-scratch cycle should be
clearly explained as scratching leads to more itching. Advice the patient to gently stroke or rub
the skin instead of scratching. Consider cotton gloves at night to avoid night time scratching.
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• Pruritus with dry skin responds to emollients such as petrolatum. Patients should avoid
frequent and hot baths and excessive use of soap, which further dries the skin.Topical steroids
are useful when there is associated inflammation.
• Cool compresses and cool baths may help. Warmth worsens itchiness, so a cool environment
helps. Light clothing and a cool shower before bedtime keep the person comfortable at night.
• Anxiolytics do not relieve pruritus but helps with anxiety and insomnia that may be associated
with it.
• Psychosocial interventions- particularly behavioral interventions and hypnosis may help
decrease itching and scratching, as well as address anxiety and sleep problems.
Topical Interventions
• Cooling lotions with calamine, pramoxine, or menthol and camphor are also helpful.
• Anesthetics- eg benzocaine spray, lidocaine or EMLA cream may be helpful.
• Topical steroid is usually used when there are signs of skin inflammation
• Capsaicin cream may be tried in chronic localized pruritus, and pruritus due to uremia.
Systemic Interventions
• Antihistamines - H1 Receptor Blockers
H1-receptor antihistamines are the drugs of choice for urticaria and allergy. First generaltion
antihistamines bind non-selectively to central and peripheral H1 receptors; while next
generation antihistamines are selective for peripheral H1 receptors. The newer less sedating
antihistamines, at low doses, are less effective in atopic dermatitis; the older sedating
antihistamines may work better. However, these next generation non-sedating antihistamines
allow for the possibility of using higher doses without causing severe sedation.
First generation antihistamines (non-selective: peripheral and centrally acting)
Consider starting with a low dose given qhs, bid, or as needed; then gradually titrate the dose
as needed.
— Hydroxyzine A: 25-100 mg PO/IM q4-6 hours. C: 0.5 mg/kg PO/IM q4-6 hours. IV/SC may
cause thrombosis, digital gangrene.
— Cyproheptadine A: 4 mg C: 0.1-0.2 mg/kg PO q 8-12 hours
— Chlorpromazine A: 25-50 C: 0.5-1 mg/kg PO/IV q 6 hours
— Diphenhydramine A: 10-50 mg C: 0.2-1 mg/kg PO/IV/IM q 6hours
— Chlorphenamine A: 4 mg C: 2 mg PO tid-qid
Next generation antihistamines (peripherally selective)
— Loratadine A: 10 mg C: <5 yrs= 5 mg; 5-12 yrs= 10 mg, PO qday
— Cetirizine A: 5-10 mg C: <5 yrs= 2.5-5 mg; 5-12 yrs= 5-10 mg, PO qday
--- Fexofenadine A: 60-120 mg C: <5 yrs= 30 mg; 5-12 yrs=60 mg, PO qday
• H2 Receptor Blockers
For severe pruritus due to cancer, drugs with H2 activities (eg tricyclics- doxepin, H2 blockers-
cimetidine, ranitidine) may be more effective than H1 blockers; these can also be added to H1
blockers.
--- Cimetidine A: 200 mg C: 2-4 mg/kg PO bid-qid
--- Ranitidine A: 150 mg C: 1.5-3 mg/kg PO bid-qid
• Tricyclic antidepressants
Tricyclic antidepressants have antihistamine activity (both H1 and H2) in addition to central
effects and are useful in chronic, severe pruritic states.
— Doxepin A: 25-75 mg C: 10-25 mg PO qhs
— Imipramine A: 25-75 mg C: 10-25 mg PO qhs
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• 5HT3 (serotonin) Receptor Blockers
5HT3 (serotonin) blockers are used for opoid induced pruritus, generalized nondermatological
pruritus- including pruritus due to uremia, cholestasis, lymphoma, and paraneoplastic
syndromes. Mirtazapine is a norepinephrine, serotonin receptor blocker that blocks H1, 5HT2,
and 5HT3.
--- Mirtazapine A: 7.5-15 mg C: 0.1-0.3 mg/kg PO qhs
• Corticosteroids
Steroids are used in severe pruritus due to lymphoma.
--- Dexamethasone A: 2-8 mg C: 0.05-0.15 mg/kg/dose PO or SC/IV bid
--- Prednisone A: 20 mg C: 0.4 mg/kg/dose PO qday-bid
• Opioid receptor antagonists (or agonist-antagonists)
Opioid receptor antagonists, like naltrexone, and agonist-antagonists, like nalbuphine, have
occasionally been used for intractable pruritus of renal and cholestatic diseases, and for
severe pruritus due to opioids (anti-histamines are also used). Avoid in patients who are on
chronic opioid therapy or possibly opioid dependent, since these agents can precipitate opioid
withdrawal symptoms.
--- Naltrexone A: 25-50 mg C: 0.5-1 mg/kg PO qday
--- Nalbuphine 10-20 ug/kg/dose IV/IM/SC q6 hr.
• Drugs for Cholestasis
Cholestyramine binds bile salts in the intestine; use is limited by large amounts needed and its
taste. Cholestyramine is not helpful in complete biliary obstruction. Rifampicin is a liver
enzyme inducer, blocks bile reuptake by the liver- which interrupts enterohepatic circulation.
--- Cholestyramine A: 4 g C: 80 mg/kg PO qday-bid
--- Rifampicin A: 75-150 mg C: 1.5-3 mg/kg PO qday
• Anxiolytics and Sedatives
Helps with anxiety, and sleep problems that are usually associated with severe pruritus. A
sedating antihistamine (eg hydroxyzine), or a benzodiazepine (eg diazepam) can be used.
— Hydroxyzine A: 25-100 mg PO/IM q4-6 hours. C: 0.5 mg/kg PO/IM q4-6 hours
— Diazepam A: 2-10 mg C: 0.04-0.2 mg/kg/dose PO tid-qid
• Other Modalities
--- Behavioral interventions, relaxation, and hynosis
--- Acupuncture and transcutaneous electrical nerve stimulation (TENS) occasionally help.
Respiratory and Oral Secretions
Common Causes
• Aspiration of food or fluids: aspiration precautions, feed upright, thicken liquids
• Overhydration, fluid overload: decrease fluid intake (oral and parenteral), use diuretics
• Pneumonia or bronchitis: antibiotics, nebulized ipatropium, steroids
• Pulmonary edema: diuretics, vasodilators, manage underlying cause/s if possible
• Tenacious secretions and strong cough: nebulized saline tid-qid, anti-tussives, mucolytics
• Too weak to cough: anticholinergic agents (eg hyoscyamine, glycopyrrolate)
• Terminal Secretions or ”Death Rattle”: anticholinergic agents
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Management
Non-pharmacologic Management
● Position the patient on their side or in a semi-prone position to facilitate postural drainage
1-2 minutes of Trendelenburg to move the fluids up into the oropharynx, for easier removal; note
that aspiration risk is increased.
● Gentle oropharyngeal suctioning, but this is often ineffective when fluids are beyond the reach of
the catheter. Frequent suctioning is disturbing to both the patient and the visitors.
● Reduce fluid intake if overhydrated.
● Consider muscarinic receptor blockers (anti-cholinergic drugs). These competitively inhibit the
action of acetylcholine at muscarinic receptors with little or no effect at nicotinic receptors.
Scopolamine (A: 0.32-0.65 mg/dose, C: 6 mcg/kg/dose, SC/IM/IV tid-qid. For > 11 yr old:
transdermal 1.5mg/patch, delivers 0.5 mg over 3 days, apply patch behind the ear, q72hr)
Hyoscyamine (A: 0.125-0.25 mg PO/SL, 0.25-0.5 mg IV/IM/SC. C: <2 yr old: 3-4 mcg/kg/dose, >2
yr old: 2.5-3 mcg/kg/dose, PO/SL, tid-qid)
Glycopyrrolate (A: 1-2 mg PO, 0.1-0.2 mg/dose IV/IM/SC. C: 0.04-0.1 mg/kg/dose PO, 0.004-0.01
mg/kg/dose IV/IM/SC, tid-qid)
Atropine (A: 0.4-0.5 mg/dose, C: 0.01 mg/kg/dose, SC/IV/IM, max 0.4 mg/dose, tid-qid).
● These agents can cause varying degrees of blurred vision, sedation, confusion, delirium,
restlessness, hallucinations, palpitations, constipation, and urinary retention. Tertiary amines
(scopolamine, atropine) cross the blood brain barrier, and quaternary amines (hyoscyamine,
glycopyrrolate) do not. Drugs which cross the blood brain barrier are more likely to cause central
nervous system side effects (sedation, delirium).
Physicians also tend to underestimate the distress caused by suctioning dying patients. Ask if there
is really a need to suction patients, especially when they are imminently terminal? Is it for their
comfort or because of the caregivers' and family’s discomfort with the gurgling sound (death
rattle)? Continuously educate patients, families, and staff about the process of dying and what to
expect when people die.
Sleep Problems
Sleep problems are frequently encountrered in palliative care patients. These include disturbances
in the sleep-wake cycle, hypersomnolence (too much sleep), insomnia (difficulty initiating or
maintaining sleep), parasomnias (problems of arousal, partial arousal, and sllep stage transitions),
and sleep apnea (breathing disorder during sleep).
Contributing Factors and Risk Factors

pain, cardiac or pulmonary dyspnea, cough, paresthesias, restless legs syndrome, GERD, urinary
problems/ nocturia, stress, anxiety, depression, adjustment and coping problems, bereavement,
alchohol, and various medications
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Management
Identify and manage cause/s and contributing factors.
Non-pharmacologic Management
• Regular sleeping time. Have a routine preparation prior to sleep (eg washing, going to the
bathroom). Wear comfortable clothes.
• Go to bed only when sleepy. If unable to sleep within 20-30 minutes, get out of bed and perform
relaxing activities.
• Relax before bedtime. Only do relaxing activities in bed. Avoid activities that are stimulating.
• Avoid loud noise, bright lights, and uncomfortable temperatures (too warm or too cold).
Soothing, relaxing music, or soft “white noise” may help. Use other relaxation techniques.
• Avoid heavy meals, caffeine, or nicotine before bedtime.
• Get up from bed at the same time every morning, regardless of the amount of sleep the night
before.
• Avoid too many daytime naps. Get adequate exposure to bright light during the daytime.
• Exercise regularly in the daytime; but not before bedtime.
• Start with a low dose, and gradually increase if needed. Monitor for any adverse reactions such
as confusion, fatigue, dizziness. Fall precautions.
• Use sleep medications only as needed, ideally < 3 to 4 days per week, and for brief periods (1
to 3 wks). When weaning a daily medication, discontinue gradually and monitor for rebound
sleep problems.
• Patients with insomnia who do not respond adequately to Zolpidem, or short-intermediate acting
benzodiazepines; and/or have co-existing problems (eg depression, dementia, delirium) may
respond better to other agents such as sedating antidepressants or neuroleptics/anti-
psychotics.
• Short Acting Non-Benzodiazepine: Zolpidem (A: 5-10 mg C: 0.1-0.2 mg/kg PO qhs)
• Intermediate Acting Benzodiazepines: Estazolam (A: 1-2 mg C: 0.02-0.04 mg/kg PO qhs);
Midazolam (A: 7.5-15 C: 0.05-0.1 mg/kg PO qhs)
• Sedating Antidepressants: Mirtazapine (A: 15-30 mg C: 0.2-0.4 mg/kg PO qHS); Trazodone
(A: 50-75 mg C: 1-1.5 mg/kg PO q HS); Imipramine (A: 10-25 mg C: 0.2-0.5 mg/kg PO qHS)
• Neuroleptics/ Antipsychotics: Haloperidol (A: 0.5-1.5 mg C: 0.01-0.03 mg/kg PO qHS);
Risperidone (A: 0.5-1.5 mg C: 0.01-0.03 mg/kg PO qHS); Olanzapine (A: 2.5-5 mg C: 0.5-0.1
mg/kg PO qHS)
• Hormonal Supplement: Melatonin (A: 2-5 mg C:0.04-0.1 mg/kg qhs)
Sleep Apnea
Episodes of apnea or hypopnea during sleep, causing ineffective sleep and daytime sleepiness.
Types
Obstructive (upper airway obstruction), Central (central respiratory drive impaired, respiratory effort
stops), Mixed (both obstructive and central)
Risk factors
large neck circumference, hypertension, overweight, smoking, snoring, problems with soft palate,
large tonsils, other upper airway abnormalities, family history
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Evaluation
Physical exam findings in patients with obstructive sleep apnea include: obesity/ overweight, high
blood pressure, nasopharyngeal obstruction, narrow oropharyngeal airway, or tonsillar
hypertrophy.
Possible tests: sleep study (polysomnography), CBC (erythrocytosis), ECG (cor pulmonale due to
sleep apnea shows findings of R ventricular hypertrophy and right axis deviation.
Management
Avoid alchohol, sedatives and hypnotics. Sleep in lateral, instead of supine, position. Lose weight if
overweight. Oral appliances that keep jaw forward or tounge anterior may sometimes help. A trial
of CPAP is recommended for clinically significant apnea. Uvulopalatoplasty. Tracheostomy for
severe apnea that is not relieved by other measures.
Urinary Problems
Common causes of urinary symptoms include: vaginitis, urinary tract infection, cancer, chemical
irritant/s, chemotherapy (e.g. cyclophosphamide cyctitis), detrusor instability, eosinophilic cystitis,
bladder compression by pelvic mass, interstitial cystitis, foreign body/kidney stones, neurogenic
bladder, radiation cystitis, urethral caruncle, and uretharal diverticulum.
Evaluation
History and Physical Exam.

Possible Tests: Selection of tests depends on the clinical situation and H and P findings, an may
include: Urinalysis. Urine culture and sensitivity. Urine cytology. CBC. Renal function tests. Post
void bladder residual (to determine if there is urine retention; an excess of 150 ml or more should
prompt treatment to improve emptying). Pre and post void ultrasound bladder imaging, or bladder
scanning are alternatives. Other tests: renal ultrasound, IVP, CT scan, and cystoscopy to check for
hydronephrosis, kidney stones, diverticuli, tumor mass, other causes.
Dysuria
• Dysuria is painful urination which suggests inflammation or irritation of the bladder outlet/ neck
or urethra. It is usually due to infection (bacterial cystitis or urethritis). Other causes include:
non-infectious cystitis or urethritis, cancer infiltration of bladder wall, radiotherapy and
chemotherapy (eg cyclophosphamide).
• Management
Treat the underlying infection with antibiotics. Increase fluid intake. For symptom control, use
Phenazopyridine (A: 100-200 mg C: 1.5 – 2 mg/kg, PO tid-qid; inform patient that urine will
turn orange). May also consider Amitryptyline or Imipramine (A: 25-50 mg, C: 0.5 mg/kg PO
qhs) particularly for interstitial cystitis. For catheterized patients, consider a lidocaine bladder
irrigation (5-10 ml of 2% lidocaine + 30-50 ml saline; irrigate and clamp the catheter for 20
minutes; then drain).
Urinary Hesitancy
• May be due to malignant or benign prostate enlargement, bladder outlet obstruction, presacral
plexopathy, drugs, intrathecal block, constipation, weakness, bladder denervation, etc.
• Management
Treat the underlying cause/s if possible. Urinary catheter if needed. Alpha adrenergics may
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help especially with prostate problems, e.g. Terazosin (A: 1-10 mg PO qhs). Consider a
cholinergic agent, e.g. Bethanecol (A:10-50 mg C:0.1-0.2 mg/kg PO tid-qid).
Urinary Bladder Spasm

• Urinary bladder spasm is the intermittent contraction of the detrussor muscle causing
suprapubic pain and urgency. Causes include: bladder irritation (e.g. cancer, infection),
radiation cystitis and/or fibrosis, anxiety, indwelling urinary catheter, fecal impaction, or
infectious cystitis.
• Management
Treat underlying cause/s if possible. Urinary tract infection is treated with antibiotics. If a
catheter is present, change the catheter and consider urinary bladder irrigation (saline
irrigation). Resolve fecal impaction if present.
Consider anti-spasmodics
Oxybutinin (A: 2.5-5 mg C: 0.1-0.2 mg/kg PO bid-tid), Hyocine butyl bromide (A:10-20 mg C:
0.3 mg/kg, PO/IM/IV/SC, tid-qid), Hyoscyamine sulfate (A: 0.125-0.250 mg C: 2.5-5 mcg/kg,
PO/SL/IM/IV/SC, qid), Flavoxate (A:100 mg C: 2 mg/kg, PO, tid-qid), or Propantheline Br (A:
7.5-15 mg C:0.25 mg/kg, PO, tid-qid).
May also consider Amitryptyline or Imipramine (A: 25-50 mg, C: 0.5 mg/kg PO qhs).
NSAIDs may help (eg naproxen A: 250-500 mg C: 5-10 mg/kg PO bid).
Intractable bladder pain may respond to a lumbar sympathetic plexus block.
Urinary Tract Obstruction and Urinary Retention

• Urethral or Bladder Neck Obstruction
Obstruction can cause significant discomfort, and should be quickly. Obstruction can be
managed with a transurethral catheter, or urethral stents for a partial/incomplete obstruction; or
a transvesical catheter for a complete obstruction.
Treat underlying cause/s if possible.
For non-surgical causes, particularly prostatic causes, also consider a trial of: alpha
antagonists – Terazosin (A:1-2mg C:0.02 mg/kg, PO, qid), Prazosin (A: 0.5-1 mg C: 0.01-0.02
mg/kg qd-bid) or Tamsulosin (A:200 mcg C:4 mcg/kg, PO, qday); Prazosin (A: 0.5-1 mg C:
0.01-0.02 mg/kg qd-bid); and 5-alpha reductase inhibitors – Finasteride (A: 5 mg, PO, qday).
Androgen deprivation may be tried for advanced prostatic cancer.
For tumor compressing the bladder neck, consider: a trial of corticosteroids, catheterization (if
possible do urethral catheterization; if not, then do suprapubic catheterization).
• Ureteral Obstruction
Treat underlying cause/s if possible. Obstruction can be relieved by ureteral stenting,
nephrostomy drainage, open surgical diversion, and/or self-expanding ureteral stents, if
appropriate. Palliative transurethral resection of the prostate (palliative TURP) may be
considered for prostate cancer.
• Drug-Induced Urinary Retention
Urinary retention may occur with drugs with anticholinergic properties (eg typical
anticholinergics, antispasmodics, tricyclic antidepressants, older antihistamines). It may also
occur at the start of opioid therapy; but it usually improves within days to weeks.
• Urinary Retention Due to Spinal Cord Compression
Urinary reterntion may be due to spinal cord compression. Evaluate for other signs of cord
compression. Consider imaging studies of the spinal cord if indicated.
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Urinary Incontinence
• Causes: (D-I-A-P-P-E-R-S)
Delirium, Infection, Atrophic vaginitis or urethritis, Pharmacologic (anticholinergics- urge
incontinence, alpha adrenergics- retention and overflow incontinence, Ca channel blockers-
retention and overflow incontinence, loop diuretics, sedative/hypnotics- decreased
awareness), Psychologic (mood or behavioral problems), Excess urine output (increased fluid
intake, alchohol, coffee, tea, diuretics, hyperglycemia, hypercalcemia), Restricted mobility,
Stool Impaction
• Types
Urge Incontinence: abrupt, sudden urge to void- usually due to detrusor muscle overactivity, or
hypersensitive bladder; senses urge to void but cannot hold it long enough to reach the toilet.
Causes: bladder irritation and bladder spasm, neurogenic bladder (spinal cord lesion)
Functional Incontinence: unable or unwilling to use bathroom, or other appropriate facilities.
Causes: physical disability, cognitive impairment, behavioral problems
Overflow Incontinence: excessive distension of the bladder- usually due to outflow obstruction
or weak detrusor muscle, results in urine leakage; large post-void residual.
Causes: bladder outlet obstruction, detrusor muscle weakness/ failure (eg anticholinergic
drugs) resulting in poor emptying and distension
Stress Incontinence: cough, sneezing, laughing, or other activities that increase intra-
abdominal pressure (Valsalva maneuver), results in leakage.
Causes: bladder sphincter weakness/ dysfunction/ injury
• Evaluation
Bladder voiding diary, physical exam (especially abdominal, gynecologic, urologic- including
prostate, and neurologic exams).
Possible Tests: electrolytes, BUN, creatinine, urinalysis (+/- culture, cytology, when
appropriate)
Peripheral Vascular Resistance (PVR): adult: normal (50 ml), suggestive of overflow
incontinence (>200 ml)
Test for urge incontinence: use a catheter, slowly fill the bladder with sterile solution, note the
volume that produces an urge to void: adult: normal bladder capacity (400-600 ml), normal
initial urge to void (250-300 ml), probable urge incontinence (strong urge to void at <200 ml).
• Management
Non-Pharmacologic Management
Pelvic Muscle Exercises (Kegel exercises): (stress and urge incontinence): active tightening/
resistance exercices of the pelvic/ periurethral/ vaginal muscles
Scheduled Voiding: (urge incontinence): resist urge to void, postpone until the scheduled time
for voiding, then gradually increase the interval between voiding
Prompted vioiding: (functional incontinence): prompting the patient to urinate at scheduled
times, especially helpful for patients with dementia or other cognitive impairments
Pharmacologic management
Alpha adrenergic agonists: (stress incontinence): pseudoephedrine or phenylpropanolamine-
there are more commonly used as nasal decongestants
Anticholinergics: (urge incontinence): Oxybutinin (A: 2.5-5 mg C: 0.05-0.1 mg/kg PO bid-tid),
Tolterodine (A: 2 mg, C:0.04 mg/kg PO bid). Gradually increase dose as needed.
Antidepressants: (urge incontinence): Imipramine (A: 25 mg C: 0.5 mg/kg PO qhs). Gradually
increase dose as needed.
Alpha 1 blockers: (outflow obstruction due to prostate enlargement): Terazosin (A:1-2mg
C:0.02 mg/kg, PO, qid), Tamsulosin (A:200 mcg C:4 mcg/kg, PO, qday), Prazosin (A: 0.5-1 mg
C: 0.01-0.02 mg/kg qd-bid).
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Tyre II 5 alpha reductase inhibitors: (outflow obstruction due to prostate enlargement):
Finasteride (A: 5 mg, PO, qday).
Estrogen: (stress incontinence due to atrophic vaginitis): topical or oral estrogen
Refractory Pain and Other Symptoms
The process of dying allows patients and family members a time of reconciliation, growth, and
spiritual enrichment. It can also be a time of significant suffering. When palliative therapies have
been exhausted and symptoms remain refractory, terminal sedation is a valuable therapeutic
option that helps achieve a peaceful, comfortable, and dignified death. Most palliative care
specialists define a symptom as refractory when it cannot be adequately controlled despite
aggressive attempts to find a tolerable therapy that does not compromise consciousness.
Malignancies whiach are usually associated with refractory symptoms include lung,
gastrointestinal, head and neck, colorectal, and breast cancer-- with pain, dyspnea, nausea and
vomitting, and agitated delirium, being the symptoms commonly requiring sedation. Terminal
sedation is also helpful in providing comfort for patients dying of nonmalignant diseases.
Prior to the induction of terminal sedation, the specialist must ascertain the need for sedation,
exhaust all other palliative treatments, obtain informed consent from the patient or surrogate
decision maker, and document a current do-not-resuscitate order. The choice of a sedating agent
is empirical. Opioids, benzodiazepines, and barbiturates are the most commonly used medications.
If opioids are already being given, the dose can be increased until sedation is achieved; although
myoclonus or agitated delirium may occur and necessitate the addition of a second drug. Aside
from opioids, the benzodiazepine, midazolam, is favorite agent due to its rapid onset, short half-life,
and ease of use in subcutaneous infusions.
Refractory Pain and Other Symptoms: Assessment and Management

1. Re-assessing and relieve other causes of physical, psychological, social, and spiritual distress.
2. Consider inpatient management, especially in a hospice or palliative care inpafient unit.
3. Consider sedation;
• Consider the ethical implications.
• Discuss available options and the goals of treatment with the team, patient and family.
• Follow the process and principles of sedation.
— Partial or temporary sedation may be enough, perhaps with a benzodiazepine.
— In extreme cases, phenobarbital boluses or a thiopental infusion may be needed.
4. The following lists starting doses for the use of sedating drugs including the initial dose (lower
doses are usually used unless symptoms are very severe), and a starting continuous infusion (CI)
rate; the CI rate can be increased as needed to achieve the desired level of sedation. The palliative
care specialist should always be present during the initial hours of this intervention.
Midazolam (SC,IV) – Initial dose: A: 2-5 mg C: 0.05 mg/kg; then A: 1 mg/hr C: 0.02 mg/kg/hr
Lorazepam (SC,IV) – Initial dose: A: 2-5 mg C: 0.05 mg/kg; then A:1 mg/hr C: 0.02 mg/kg/hr
Thiopental (IV) – Initial dose: A: 2-6 mg/kg; then A: 20-80 mg C: 1 mg/kg qhour or as needed
Pentobarbital (IV) – Initial dose: 2-3 mg/kg; then 0.5-1 mg/kg/hr
Phenobarbital (IV,SC)- Initial dose: A:100-200 mg C: 1-3 mg/kg (can repeat q10-15 min) then A: 25
mg C: 0.05 mg/kg every hour, titrate as needed
Propofol (IV) – Initial dose: A: 20-50 mg C: 0.4-1 mg/kg; then A: 5-10 mg C: 0.1-0.2 mg/kg qhour
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6 Urgent and Emergent Problems
Management of Urgent and Emergent Conditions

Palliative care urgencies and emergencies can lead to significant distress, suffering, and poorer
quality of life. Urgent or emergent problems and their complications are more easily managed if
they are anticipated and identified early by the palliative care specialist.
Ways to Minimize Distress Caused by Urgent and Emergent Conditions

• Anticipate the event, ie. identify patients at risk. But be aware that many cases may involve
patients who do not initially appear to be at-risk. Always have contingency plans ready.
• Draw up an agreed management plan with the patient, family and health care team if possible,
eg. whether the patient is to be admitted to hospital or stay at home, what sort of life prolonging
measures would be appropriate, who needs to be contacted, etc.
• Make sure emergency drugs are available in the home.
• Make sure written orders are in the home for the community nurses to be able to give
medications, eg. morphine, Midazolam, etc.
• Someone should always remain with the patient. Counsel them; they will likely be frightened.
• Always arrange follow up for the family. If poorly managed, these urgent and emergent
complications can cause distress, panic and guilt, especially for care givers.
• Remember morphine is very effective for pain and dyspnea but is a very poor sedative.
Acute airways obstruction
• Usually associated with tumors of head and neck, trachea and large bronchi.
• Increasing dyspnea and stirdor may be preceding symptoms.
Management for potentially reversible obstruction
• Steroid: eg A: Dexamethasone 16mg, C: 0.5-2 mg/kg/day div q6hrs, IVIM/SC/PO stat then daily
• Opioid for dyspnea and pain: eg A: Morphine 2-10mg IV/IM/SC, 5-30 mg PO, C: 0.1-0.2
mg/kg/dose IV/IM/SC, 0.2-0.5 mg/kg/dose PO, q4hours (for dyspnea).
• Consider urgent radiotherapy/stenting.
Management for irreversible obstruction or terminal event
• Sedation: eg Midazolam: Adult: 0.5-2 mg, Child: 0.03-0.05 mg/kg, repeat q 2-4 minutes as
needed until desired effect SC/IM/IV. Other routes use IV solution:PO/Intranasal/PR, 0.3-0.5
mg/kg
• Opioid for dyspnea and pain: eg Morphine A: 2-10mg IV/IM/SC, 5-30 mg PO, C: 0.1-0.2
mg/kg/dose IV/IM/SC, 0.2-0.5 mg/kg/dose PO, q4hours
• For Secretions: Anticholinergic agents, eg Hyoscyamine A: 0.125-0.25 mg PO/SL, 0.25-0.5 mg
IV/IM/SC. C: <2 yr old: 3-4 mcg/kg/dose, >2 yr old: 2.5-3 mcg/kg/dose, PO/SL, tid-qid
Adrenal insufficiency
• Adrenal insufficiency can be due adrenal suppression resulting from extended use of
glucocorticoids combined with abrupt termination of therapy, congenital adrenal hypewrplasia,
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Addison’s disease, hypothalamic or pituitary disease, tumors, surgery, and radiation therapy.
Adrenal insufficiency is exaggerated in the setting of physiologic stress and can manifest as
hypoglycemia, hypotension, acidosis, hyponatremia, hyperkalemia, and shock.
Possible tests
• electrolytes, crea, glucose, CBC, cortisol (decreased), ACTH (elevated).
Management
• For adrenal crisis, manage with IV volume expansion to support BP, dextrose to maintain blood
glucose, and corticosteroids. Use hydrocortisone IV (A: 300-400 mg/day C: 50-100 mg/day
continuous drip or in divided doses given q3-4 hrs). Gradually decrease the dose as tolerated,
and then shift to maintenance PO steroids (Glucocorticoid: Prednisone: A: 2.5-7.5 mg C: 0.1
mg/kg qday; Mineralocorticoid: Fluorocortisone: A: 0.5-1 mg C: 0.01-0.2 mg/kg qday). Increase
dietary sodium intake.
Ascites
• Causes of ascites include: advanced liver disease and/or cirrhosis (half of all cases), cancer,
CHF, pancreatic disease, hypothyroidism, and infections (eg tuberculosis).
• As many as 50% of patients with cancer may have ascites during the course of their illness.
• Evaluate for controllable or reversible cause/s. Ascites in a patient with cancer is not always
due to intraabdominal carcinomatosis. Take a good history and physical examination. Bulging
flanks may be noted with 0.5-1 liter ascitic fluid (percuss for flank dullness and shifting dullness
to differentiate from bulging flanks due to obesity). Look for signs of liver disease/ cirrhosis.
Check for pleural effusion (usually right sided) and lower extremity edema. Tests may include
liver and renal function tests, electrolytes, albumin, TSH, imaging studies (eg Xray or CT- chest,
abdomen; ultrasound), ECG, echocardiogram, and tests to identify other causes (eg infection).
Ultrasound can detect as little as 100 ml ascitic fluid.
Management
Diuretics
• Manage with dietary Na restriction, and diuretics such as furosemide (loop diuretic, A: 40-100
mg C: 1-2 mg/kg, PO/IV/IM, qday-qid), bumetanide (A: 1-2 mg C: 0.02-0.04 mg/kg PO/IV/IM
qday-qid) and/or spironolactone (K sparing diuretic, A: 25-50 mg C: 0.5-1 mg/kg, PO, qday-bid,
carefully increase by A: 25-50 mg C: 0.5-1 mg/kg every week as needed). Spironolactone may
require high doses to be effective.
• Diuretics are effective for ascites due to non-malignant disease (eg cirrhosis, CHF). For
malignant disease, diuretics can be effective for ascites due to hepatic metastases; and less
effective for peritoneal carcinomatosis and chylous ascites. Diuretics are effective when serum-
ascites gradient is equal to or greater than 11 g/L.
• Due to the long half-life of spironolactone and its metabolite, it may take 2 weeks before
significant diuresis occurs. Spironolactone monotherapy can be used if there is no urgent need
to diurese and control ascites in less than 2 weeks. If early diuresis is desired, then a loop
diuretic (furosemide or bumetanide) can be used.
The loop diuretic can be used in various ways, such as:
--- as initial monotherapy until adequate diuresis has been achieved before shifting to
spironolactone
--- in combination with spironolactone for a limited numbers of days - until adequate diuresis
has been achieved- within the first 2 weeks of spironolactone therapy, or until the dose of
spironolactone has been titrated high enough to produce adequate diuresis
--- episodically- for a limited duration- during periods of exacerbation while on spironolactone.
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--- continuously- either as monotherapy or in combination with spironolactone- for severe
cases which cannot be controlled by spironolactone alone, or if spironolactone is not tolerated
due to adverse effects.
• Monitor for common adverse effects and complications of diuretic therapy such as:
dehydration/hypovolemia, postural hypotension, electrolyte disorder/s, uremia, kidney failure,
and hepatic encephalopathy (in patients with liver failure). Monitor closely especially when:
starting diuretics, changing diuretic dose, starting medications that may interact with the diuretic
or affect kidney function, and when the patient’s kidney function or overall clinical status
changes/ worsens. Monitor the response to the diuretic regimen; titrate the dose/s or change
the regimen or management approach if the response is inadequate. Use the lowest effective
maintenance dose to decrease the possibility of adverse effects and complications.
Paracentesis
• Paracentesis can be diagnostic and/or therapeutic. A serum albumin that is greater than ascitic
fluid albumin by more than 1.1 g/dL is consistent with portal hypertension.
• Diuretics are usually effective and should be used first when serum-ascites gradient is equal to
or greater than 11g/L.
• Symptoms can be relieved by the removal of relatively small volumes of fluid for a short period
of time. In adults, removal of 1-2 liters using a small IV catheter can be done in 1-1.5 hours. The
small volume, short duration, and small catheter size used decreases the possibility of
complications that are associated with large volume paracentesis.
• Large volume paracentesis can be done for refractory ascites. Closely monitor hemodynamic
status. Volume expansion with colloids can be used to prevent or treat volume depletion.
Complications include: hypovolemia, hyponatremia, hypoalbuminemia, post-procedure fatigue
and generalized weakness. Patients with severe liver disease may progress to liver failure and
hepatic encephalopathy in the first 24-36 hours after paracentesis.
• Paracentesis Procedure
• Use an Abbocath Gauge 18-20 (for adults)/ Gauge 14-18 (for children), a 20 ml syringe, an IV
tubing, and a 1+ liter sterile bottle. Also prepare specimen containers if diagnostic studies are
planned.
• Empty the urinary bladder. Position the patient supine, and (if possible) elevate the head and
chest by 30 degrees. Confirm the presence of ascites (by physical exam and/or ultrasound).
Consider ultrasound guided paracentesis if there is a disruption of nearby structures (eg
organomegaly, tumor, scarring, bowel obstruction, and adhesions).
• Determine the site: Usual site is 3 cm (for adults), or 1-2 cm (for children) below the umbilicus at
the midline. Or 3-6 cm (for adults), or 2-4 cm (for children) above the anterior superior iliac
spine, lateral to the rectus abdominis sheath. Avoid surgical scars. Avoid the right side in
patients with hepatomegaly; avoid left side for splenomegaly. Avoid side or area of tumor.
• Prepare skin with povidone iodine solution and drape. Anethetize the skin with 1% Lidocaine;
then anesthetize the subcutaneous and tissue and the parietal peritoneum. Assemble the
angiocatheter, syringe, stopcock, and IV tubing.
• Retract the skin downward, and apply gentle negative pressure with the syringe as you enter
the peritoneal cavity. Advance the catheter once ascitic fluid returns, and remove the needle.
Draw fluid samples for any planned studies.
• Place the opposite end of the IV tubing in the collection bottle. Turn the stopcock open to
proceed with therapeutic paracentesis of a predetermined volume.
• Once done, dress the wound and document the procedure.
• Fluid studies include: quantitative and qualitative studies (bottle 1); gram stain, AFP smear
(bottle 2); and culture and sensitivity (bottle 3). Other tests include: total protein, LDH, glucose,
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LDH; fluid and serum amylase (for suspected pancreatitis), fungal stain and culture, cytology
(for suspected cancer), triglyceride, and bilirubin. Also obtain blood for total protein, glucose,
and LDH.
Peritoneovenous Shunt
• For diuretic resistant cases that require frequent large volume paracentesis (due to rapid
reaccumulation of fluid), peritoneovenous shunting is an option.
• Useful for patients with good cardiac function, kidney function and relatively long survival time >
1 month (eg gynecological/ovarian cancer, non-gastrointestinal cancer). Short survival time and
poor prognosis is a relative contraindication to the procedure (eg positive cytology for cancer
cells in ascitic fluid which correlates with a survival of about 1 month- compared to 4-5 months
for negative cytology).
Palliative Chemotherapy
• For diuretic resistant cases that require frequent large volume paracentesis (due to rapid
reaccumulation of fluid), some patients may respond to palliative chemotherapy. Examples
include: ovarian cancer (platinum based drug, paclitaxel); colon cancer (5FU, leucovorin).
Bleeding
• Bleeding may involve the tumor mass (tumor bleed), GI tract (eg gastritis, ulcer causing GI
bleed), sites of trauma, post surgical sites, venipuncture sites, sites of catheter and other line
insertions, and others. There may also be an ongoing coagulation/ bleeding disorder (eg vitamin
K deficiency, liver disease, von Willebrand’s disease, hemophilia, platelet diosorders). The
patient may also be on anticoagulant therapy (eg warfarin, heparin), antiplatelet therapy (eg
aspirin, clapidogrel), or other medications that can lead to bleeding (eg NSAIDs).
Management
• Stabilize the patient hemodynamically. Consider IV fluid support and blood transfusion if
indicated. Apply pressure to control bleeding in accessible sites.
• Provide dark towels and a dark basin at the bedside (to hide the color of blood to reduce
anxiety).
• If terminal/ massive bleed is possible. Prepare an emergency prefilled syringe of a sedative (eg
midazolam (A: 5 mg C: 0.1 mg/kg) to be given IV/SC.
• Identify and manage potentially correctable causes. Correct underlying coagulation or bleeding
disorders. Platelet transfusion if indicated.
• Severe bleeding with elevated PT and/or PTT may require an infusion of fresh frozen plasma.
• Consider topical agents (eg thrombin solution) and special dressings in accessible sites.
• Consider local application of vasoconstrictors (eg epinephrine). Other local measures include:
sucralfate (for GI bleed or external tumor bleed), silver nitrate (for urinary bladder bleed or nose
bleed), 2-4% formalin (chemical cautery for non resolving rectal or bladder bleed), aluminum/
1% alum (continuous irrigation for bladder bleed), and prostaglandin E2 and F2 (bladder bleed).
• Decrease the dose or discontinue problematic medications.
• Vitamin K: Give Vit K for elevated PT/INR, Vitamin K deficiency, liver disease, or if the patient is
on warfarin. Weigh the risk of significant bleeding with the risk of thromboembolic problems that
may occur when anticoagulation is completely reversed. For mild-moderate bleeding episodes
consider holding anticoagulation for 1-2 days and/or decreasing intensity of anticoagulation
regimen- ie target lower PT/INR levels.
Vitamin K: Phytomenadione/Phytonadione (A: 10 mg C: 2-5 mg, SC/IM, qday; Use slow IV
route (at least 1mg/min) for emergency situations only- severe hypersensitivity reactions may
occur with IV); Menadione (A: 10-20 mg C: 5-10 mg, PO, qd-bid)
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• Tranexamic Acid: For mild cases (A: 250-500 mg C: 5-10 mg/kg, PO, tid-qid, for 3-10 days; or
A: 250 mg C: 5 mg/kg, IV, tid-qid, for 3-10 days). For severe cases (A: 500 mg C: 10 mg/kg, IV,
tid-qid, for 3-10 days).
• Surgical or endoscopic intervention may be needed to control some cases of bleeding.
• Constanly advice and counsel the patient and family. Respect their management preferences.
• Manage bleeding during the terminal phase appropriately (refer to chapter on the terminal
phase)
Gastrointestinal Bleeding
• Upper GI bleeding (UGIB) can be due to: ulcers, gastritis and gastric erosions (due to NSAIDs,
apirin, poor perfusion/ shock, physiologic stress), cancer, gastroesophageal varices,
esophageal tears, and angiodysplasia.
• Lower GI bleeding (LGIB) can be due to: cancer, rectal and anal problems (hemorrhoids/
fissure/ polyps), diverticulosis, colitis (infectious, radiation, ischemic), arteriovenous
malformation, angiodysplasia, and aortoenteric fistula.
History
• History should include: nature of bleeding (hematemesis- bloody vomitus or coffee ground,
hematochezia- bright red blood which suggests LGIB or UGIB involving > 1000 ml blood,
melena- shiny/ tarry/ black/ thick/ foul smelling stools due to hematin from as little as 50-100 ml
digested blood that has been in GI tract for > 12-14 hours, occult blood detected by fecal occult
blood test); amount and frequency of bleeding; history of easy bruisability/ nosebleeds/ bleeding
gums; severe retching (that may cause a Mallory Wiess tear/ gastroesophageal tear);
orthostatic dizziness (hypovolemia); medical history (cancer, liver/ gastic /esophageal/
intestinal/ recta/ anal disease, bleeding disorder, liver disease); medications (eg NSAIDs,
aspirin); alcohol abuse; family medical history (eg cancer, bleeding disorder)
Physical Exam
• Do an adequate P.E. which includes examination for: pallor, tachycardia, orthostatic
hypotension, abdominal tenderness/ guarding/ rebound/ masses/ ascites/ bowel sounds, signs
of liver disease (eg jaundice, spider angioma)
Possible Tests
• CBC and platelet count, BUN/Crea, coagulation tests (PT/INR, PTT, bleeding time), liver
function tests, NGT and aspiration to check for freash blood and/or gastroccult test, endoscopy,
anoscopy
Management
• Management may include: intravenous fluid support, blood transfusion for significant blood loss-
always have 2 u of blood on stand-by, proton pump inhibitor/ H2 blocker/ sucralfate for UGIB,
tranexamic acid, endoscopic or surgical interventions, intraarterial embolization. Hypocalcemia
may result if several units of citrated blood are transfused- monitor Ca. Correct bleeding
disorders (eg platelet transfusion, vit K). Consider IV proton pump inhibitors for UGIB.
Persistently bleeding GI tumors may respond to palliative radiotherapy.
• Bleeding from benign ulcers spontaneously stop in as many as 80% of cases; and supportive
measures alone may be all that is needed. However there is also an increased risk of re-
bleeding- especially if predisposing factors and factors that hinder ulcer healing are present;
and close monitoring, and more definitive treatments may be appropriate.
• For bleeding varices, emergent management may include: balloon tamponade – controls
bleeding in 80% of cases, endoscopic procedures (eg sclerotherapy), ligation procedures,
Octreotide IV (A: 50 mg C: 1 mg/kg, bolus then continuous infusion of same dose per hour,
and/or IV vasopressin (A: 0.2-0.4 mg/min C: 4-8 mcg/kg/min, contraindicated in patients with
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cardiovascular disease). More definitive management may include: surgical shunting or
devascularization procedures.
Hemoptysis
• Hemoptysis is the coughing up of blood. It occurs in as many as 10% of patients.
• Hemoptysis can be due to cancer, tuberculosis, pneumonia, bronchitis, bronchiectasis, mitral
stenosis, pulmonary edema, pulmonary embolism, and arterio-venous fistula. Bleeding may
also come from a non-pulmonary source such as: nose, pharynx, and mouth.
• Significant hemoptysis which involves >200 ml blood/24 hrs is rare. Severe hemoptysis involves
>600 ml blood/24 hrs. Significant bleeding may occur in primary tumors of the lung.
Evaluation
• Rule out GI bleed. Quantify the amount of bleed. Check for coagulation problems.
Possible Tests
• CBC with platelets, CXR, PT, PTT/INR, bleeding time
Management
• IV fluid support, plasma expanders, blood transfusion if indicated, hemostatic agent (eg
tranexamic acid), and cough suppressants. Position to prevent choking and aspiration.
• For non-resolving and worsening hemoptysis, consider: radiotherapy (will control most cases),
bronchoscopy, or possible surgical intervention if appropriate. Avoid nebulized treatments if it
will irritate the bleeding source.
• For significant and severe terminal bleeding consider: morphine (A: 5-10 mg C: 0.1-0.2 mg/kg)
+/- midazolam (A: 2-5 mg C: 0.05-0.1 mg/kg); and colored towels, blankets, and basin to hide
color of blood. Position the patient on his/her side (keep the bleeding site down if it is known).
Brain Metastases
• Metastatic brain tumors can cause progressive neurologic deterioration leading to coma and
death. Median survival time of untreated brain tumors is about 1 month; and 3-8 months for
treated cases.
• Symptoms and signs may be focal (paresais, sensory loss, aphasia), and/or non-focal (classic
morning headache seen in 40% of patients, papilledema, mental status changea, nausea and
vomiting.
• MRI or CT scan can detect brain metastases. MRI is more sensitive than CT scan especially for
lesions in the posterior fossa. Bone windows in CT can detect bone metastases, especially at
the base of the skull.
Management
• Dexamethasone (A: 4 mg C: 0.5-1 mg/kg PO/IV/IM/SC qid) relieves headache and may reverve
neurologic deficits. Effect only lasts for a few weeks, but may be extended by dose escalation
while awaiting definitive treatment. If definitive treatment is effective, it may be gradually
tapered.
• Anticonvulsants are given for known or suspected seizures (e.g. transient neurologic
dysfunctions), or if surgical resection is planned.
• Radiotherapy is the standard treatment for brain metastases.
• Surgery for solitary or limited number of resectable tumors, followed by radiotherapy may
prolong survival compared to radiotherapy alone. Radiosurgery delivers large doses of radiation
in a defined target area. Radiosurgery may be as effective as surgery, and is particularly helpful
for unresectable tumors, multiple metastases, and tumors which are resistant to standard
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radiotherapy. Chemotherapy is seldom definitive, but has been used for metastatic breast
cancer, lymphoma, and lung cancer.
Delirium
• Delirium is common in palliative care patients and increases in prevalence with disease
progression. It can occur in 40-85% of patients in the last weeks of life. It is associated with
increased morbidity/distress in patients, families, and staff. It also interferes with symptom
assessment and control.
Clinical Features
Altered conscious state Disturbed sleep pattern--
Altered mood (excited or depressed) (drowsy by day, insomnia at night)
Impaired short term memory Impaired judgement
Disordered speech Abnormal psychomotor activity--
Impaired thinking (delusions) (increased or decreased)
• It can be difficult to distinguish dementia from delirium but the main features of delirium are:
global impairment, subacute/acute onset, and fluctuation of symptoms during the day.
• Beware the quietly withdrawn patient (hypoactive delirium)– they may be quietly confused.
(There is a common misdiagnosis of hypoactive delirium for depression); and their distress can
be just as severe as the agitated patient.
Causes
Brain tumor-- primary, metastatic Withdrawal states--
Paraneoplastic syndromes (eg alcohol, opioids, benzodiazepines,
Pain nicotine)
Hypoxia Drugs--
Electrolyte imbalance-- (eg steroids, opioids, anticholinergics,
(eg hypercalcemia) antiemetics, anxiolytics, anticonvulsants,
Metabolic encephalopathy-- antidepressants, NSAIDs)
(eg due to organ failure) Infection--
Nutritional deficiencies— (eg sepsis, UTI, pneumonia)
(eg Werneke’s encephalopathy) Endocrine disorders
DIC and bleeding-- Constipation
(eg subdural haematoma) Urinary retention
Management of Severe Delirium and Terminal Delirium

(for the management of mild-moderate delirium, refer to the previous chapter)
Reverse the reversible causes of delirium
• Most often the etiology of terminal delirium is multifactorial or not found. When a distinct cause
is found, it is often irreversible, eg. hypoxic encephalopathy and metabolic causes are
associated with irreversibility. Even if a nonreversible cause is discovered, it may help to know
the reason for confusion and avoid further invasive investigation. The diagnostic work-up must
be consistent with goals of care and the focus should remain on relieving patient distress.
Urinary retention and constipation are readily reversible and should not be missed as a cause of
delirium.
Non-pharmacological interventions
• Ensure safety of patient, family and staff.
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• Advise the family and patient of the nature of delirium, ie. “Not losing your mind” or “having a
nervous breakdown”.
• If delirium occurs with other signs of imminent death, advice the family that delirium is a
possible sign of approaching death.
• Some patients may have intact insight and they should gently be “re-orientated” in conversation
if possible. Providing clocks, calendars, and reminders to re-orient the patient may be helpful,
and may delay the onset of delirium.
• Discuss with the patient and the family. What are the goals of care and desirable outcomes?
Sedation versus being alert but distressed?
Pharmacological interventions
• Typical Neuroleptics
Haloperidol A: 2-5 mg C: 0.03-0.05 mg/kg, PO/IV/IM/SC q0.5-2hr until calm, then bid-qid
Chlorpromazine A: 50-100 mg/dose C: 0.5 mg/kg/dose PO/PR/IV q 6-8 hours; more sedating
than haloperidol.
• Atypical Neuroleptics
• Both haloperidol and chlorpromazine potentially lower the convulsant threshold and should
therefore be avoided or used with caution where seizure is a possibility. Consider risperidone or
olanzapine instead.
• If agitation is severe and/or further sedation is needed, possible options include:
--- shift from haloperidol to chlorpromazine (more sedating)
--- a combination of haloperidol (or an atypical neuroleptic) and a benzodiazepine (Diazepam,
Midazolam, Lorazepam). Monitor cardiorespiratory status especially when using higher doses of
neuroleptics and/or when adding a benzodiazepine.
• Benzodiazepines
Lorazepam A: 2-5 mg C: 0.02-0.15 mg/kg q3-4hrs, PO/IV/IM/PR, slow IV over 2-5 minutes.
Diazepam A: 2-5 mg. C: 0.02-0.15 mg/kg, PO/SC/SL/PR/IV, q3-4hrs
Midazolam A: 1-2 mg C: 0.02-0.05 mg/kg, may repeat q 2-4 hours as needed, SC/IM/IV. Other
routes (use IV solution): PO/Intranasal/PR, 0.3-0.5 mg/kg, may repeat q 2-4 hours as needed.
3-4 times the potency of diazepam. Monitor cardiorespiratory status. Avoid giving IV doses as a
bolus; administer over at least 2-3 minutes and allow an additional 2-4 minutes to evaluate
sedative effect. If rapid relief and symptom control is needed, IV doses of A: 1 mg C: 0.02
mg/kg may be repeated every 3-5 minutes. For severe, refractory delirium, consider A: 10-15
mg/day C: 0.2-0.3 mg/kg/day IV/SC infusion, carefully titrated to effect, under close monitoring.
• Sedation will not reverse confusion and may potentially exacerbate it. Monitor for any
exacerbation of confusion.
• If confusion/ behavior becomes difficult to manage at home, consider a hospice unit admission.
Hematologic Problems and Blood Component Therapy

Cytopenia
• Cytopenia refers to a decreased number of formed elements in circulating blood. Causes
include: decreased or ineffective production in the bone marrow, increased destruction,
sequestration in the spleen, or a combination of these causes.
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Pancytopenia
• Pancytopenia can be due to bone marrow failure or hypersplenism. Causes of bone marrow
failure include: bone marrow metastases, marrow fibrosis (primary myelofibrosis, secondary
myelofibrosis due to collagen vascular disease, toxic and cytotoxic agents, infectious agents
such as tuberculosis, hematologic disease, and other causes), marrow necrosis due to cancer
or sickle cell disease, and marrow failure due to treatment such as radiotherapy and
chemotherapy.
• The choice of tests to evaluate pancytopenia depends on the patient’s history, physical
examination, and results of previous tests. This may include serial CBC, serum alkaline
phosphatase, lactate dehydrogenase (LDH), uric acid, bilirubin, bone marrow aspiration and
biopsy, radiographs, and bone scan.
• Management includes hematologic supportive care, and management of the underlying
cause/s. Splenectomy may be needed for hypersplenism.
Anemia
• Anemia can be due to blood loss, iron deficiency, nutritional deficiencies (folic acid, vitamin
B12), anemia of chronic disease (ACD), anemia due to parvovirus B19, pure red cell aplasia,
warm body (IgM) or cold body (IgG) immune hemolysis, or microangiopathic hemolysis.
examination, and results of previous tests. This may include serial CBC, tests to determine sites
of gross or occult bleeding such as endoscopy, stool occult blood, peripheral blood smear, bone
marrow aspiration and biopsy.
cause/s. Consider iron therapy (ferrous sulfate/ gluconate /fumarate +/- folate, B12). For iron
deficiency anemia and intact hematopoiesis, 1-2 months of therapy will show improved Hb
values.
Granulocytopenia / Neutropenia
• Granulocytopenia/ Neutropenia can be due to chemotherapy, radiotherapy, other drugs, marrow
metastasis, paraneoplastic suppression of granulopoiesis, and severe infection.
examination, and results of previous tests. This may include serial CBC, serum alkaline
phosphatase, lactate dehydrogenase (LDH), uric acid, bilirubin, cultures and tests for infection,
bone marrow aspiration and biopsy, radiographs, and bone scan.
cause/s.
Thrombocytopenia
• Thrombocytopenia can be due to decrease production or increased destruction of platelets.
Splenic sequestration usually causes thrombocytopenia with anemia. Causes of increased
platelet destruction include: DIC, idiopathic thrombocytopenic purpura (ITP), thrombotic
thrombocytopenic purpura (TTP), and hemolytic-uremic syndrome (HUS). TTP/HUS can occur
during chemotherapy.
examination, and results of previous tests. This may include serial CBC, peripheral blood
smear, bone marrow aspiration and biopsy, and tests for DIC.
cause/s.
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Hyperleukocytosis
• This refers to a WBC count greater than 100,000/mm3. Occurs mostly in leukemia and
myeloproliferative disorders. It may cause life-threatening complications (eg, cerebral infarct,
cerebral hemorrhage, pulmonary insufficiency, tumor lysis syndrome). The complication
frequency is higher in acute myelocytic leukemia than in acute lymphoblastic leukemia, since
myeloblasts are larger and more adhesive than lymphoblasts.
• Monitor for symptoms of hypoxia and acidosis, including dyspnea, headache, confusion,
somnolence, and blurring of vision. Check for papilledema.
Management
• Manage and control any life-threatening complications. Once life-threatening complications
have been controlled, begin treatment of the underlying etiology (eg anti-leuikemic treatment/
chemotherapy).
• Prophylactic measures for tumor lysis syndrome which includes: hydration, allopurinol, and
urine alkalinization to facilitate uric acid excretion.
• Hyperleukocytosis may cause significant complications when the white cell count is greater than
100,000/mcL in acute myelogenous leukemia and 300,000/mcL in acute lymphoblastic
leukemia. In these patients consider measures such as leukapheresis or exchange blood
transfusion to reduce the white cell count rapidly.
• Avoid unnecessary blood transfusions; do not raise Hb above 8-10 mg/dL. Platelet transfusions
do not significantly worsen hyperviscosity; keep platelets at least above 20,000/mm3.
Blood component therapy (BCT)

• Blood component therapy (BCT) refers to the transfusion of specific products derived from
whole blood, such as red blood cells, platelets, plasma, or granulocytes. It is an important part
of the care of patients with severe anemia, hemorrhage, thrombocytopenia, and coagulation
disorders. A good understanding of the indications for BCT helps minimize unnecessary
exposure of patients to unneeded blood products and to avoid wasting limited resources.
Blood Components and Indications for Use

Component Indication For Use
Red blood cells (packed Acute and chronic anemias
RBCs)
Whole blood Rarely indicated in massive hemorrhage, exchange transfusion,
autologous transfusion
Leukocyte reduced RBCs Reduce febrile transfusion reactions when RBCs are indicated
Washed red cells Reduce allergic and febrile transfusion reactions when RBCs are
indicated
Random donor pooled Indicated for use in patients with nonimmune thrombocytopenia with
platelets, single-donor active bleeding or for prophylaxis; patients with decreased platelet
apheresis platelets survival
HLA-matched platelets, Alloimmunized patients with decreased platelet survival
crossmatch compatible
platelets
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Fresh frozen plasma Replacement of all coagulation factors if specific factor treatment is
not available, liver disease, DIC, hypofibrinogenemia
Cryoprecipitate Hypofibrinogenemia, factor VIII replacement
Granulocytes Neutropenic patient with infection unresponsive to antibiotics
Recombinant factor VIII/IX Hemophilia A/hemophilia B
concentrates
Protein C, antithrombin III Specific factor deficiency states associated with thrombosis
FEIBA Factor VIII inhibitor bypassing agent for patients with factor VIII
antibody (inhibitor)
Red Blood Cell Transfusions

It is preferable to use ABO Rh compatible red cell transfusion
For severe anemia without hypovolemia, consider small incremental transfusions of packed
cells.
• For Hb <30 g/l transfuse 5ml/kg over 4-6 hrs
• For Hb 30-40 g/l transfuse with 6 ml/kg over 4-6 hrs
• For Hb 40-50 g/l transfuse with 7 ml/kg over 4-6 hrs
• For Hb 50 g/l transfuse the required amount over 4 hours
• A packed RBC transfusion of approx 15 ml/kg increases Hb by approx 30g/l
Indications
• Hb <70-80 g/l for well patient
• Hb <100 g/l for significantly symptomatic patient
• Hb <80 g/l when beginning a course of chemotherapy
• Hb <80-100 g/l when receiving radiation
• Acute or ongoing blood loss of >10% of blood volume, or bleeding with Hb <80 g/l
• Hb <11-12 g/l for severe respiratory insufficiency requiring supplemental oxygen
• Hb <70-80 g/l when undergoing anesthesia
Recombinant Human Erythropoietin: 150 U/kg/d SC 3 times a week. If there is no response in 2-
4 weeks, may increase to 300 U/kg/d SC 3 times a week. When Hct reaches 40%, stop treatment
until Hct <36%; restart at 25% of dose. And continue to titrate. If the Hct increases very rapidly (4%
in 2 weeks) reduce dose by 25%.
Hypocalcemia: May result from transfusion of several units of citrated blood. Monitor Ca levels.
Granulocyte Transfusions
Dose is generally >1 x 10^10/m2 granulocytes.
Indications
• Severe neutropenia [ ie absolute neutrophil count (ANC) <100/ul], and serious bacterial or
fungal infection, and persists despite antibiotics.
• It is preferable to use ABO Rh compatible granulocyte transfusion
• ANC is not expected to increase to >500/ul for several days
Recombinant Human Granulocyte Colony Stimulating Factor: 5ug/kg/d SC or IV over 30
minutes. Increase to 10 ul/kg/d if respose is suboptimal at 5ug/kg/d
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Platelets Transfusions
It is preferable to use ABO Rh compatible platelet transfusion.
4 units of platelet concentrates/m2 or 1 unit/7.5kg should increase the platelet count by 50,000/ul
by 60 minutes after transfusion.
In patients receiving multiple other fluids etc give at a rate of 3ml/kg/hr over 2-3 hours.
Indications:
• Platelet count < 10 x 109/L with failure of platelet production (cancer/ leukemia/ etc)
• Platelet count 10-20 x 109/L with failure of platelet production and additional risk factors
• Platelet count <20 x 109/L in the pre engraftment phase in stem cell transplantation
• Platelet count <20 x 109/L for tumors which are at risk due to necrosis (colorectal, bladder,
gynecological, melanoma)
• Platelet count <30 x 109/L in patient with brain tumor on chemotherapy
• Active bleeding in association with a platelet qualitative defect
• Unexplained excessive bleeding in a patient undergoing cardiopulmonary bypass
• Platelet count < 50 x 109/L in DIC or with abnormal coagulation and bleeding
• A platelet count > 30-50 x 109/l is generally acceptable for lumbar puncture,
> 50 x 109/l for minor surgery and > 80-100 x 109/l for major surgery such as neurosurgery.
Bleeding is more likely to arise in disease-induced than therapy-induced thrombocytopenia, and
the presence of additional risk factors such as sepsis, drugs that impair platelet function, abnormal
haemostasis or invasive procedures increase the risk of bleeding and a higher threshold is
recommended.
Adverse Effects of Blood Component Therapy

Adverse Effect Estimated Risk of Complication
Acute hemolytic transfusion reaction 1:50,000
Death from acute hemolytic reaction 1:500,000 to 1:800,000
Febrile non- hemolytic reaction 1:100 to 1:200
Allergic transfusion reaction
Urticaria 1:100
Anaphylaxis 1:50,000 to 1:100,000
Delayed hemolytic reaction 1:2,000 to 1:4,000
Transfusion-associated sepsis
Random donor platelets 1:1,700 to 1:3,000
Single-donor apheresis platelets 1:20,000 to 1:30,000
Red blood cells <1:1,000,000
Transfusion-associated graft-vs-host disease Unknown, rare
Transfusion-associated acute lung injury Unknown
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Management of Blood Component Therapy Reactions
Reaction Symptoms and Signs Management
Acute Back pain, fever, decrease Transfusion evaluation,* vasopressor support,
intravascular in blood pressure, fever, IV fluids, maintain diruresis, corticosteroids or
hemolytic reaction shock, dyspnea, dialysis if indicated
hemoglobinuria,
hemoglobinemia, positive
DAT
Delayed Anemia, jaundice, fever, Transfusion evaluation, increase fluids, follow
extravascular hemoglobinuria, positive Hct, LDH, bilirubin; rarely causes intravascular
hemolytic reaction DAT hemolysis
Febrile reaction Fever, chills, rigors, mild Transfusion evaluation, antipyretics, consider
dyspnea premedication or leukoreduced product for
subsequent transfusions
Allergic (mild) Urticaria, pruritus Antihistamines, may continue transfusion if
symptoms improve in <30 min; otherwise,
perform evaluation
Allergic Urticaria, bronchospasm, Transfusion evaluation, antihistamines,
(anaphylactic) dyspnea, nausea, vasopressor support, corticosteroids, consider
hypotension premedication or washed RBCs for subsequent
transfusions
Septic reaction Rapid onset of chills, fever, Transfusion evaluation, culture product and
hypotension patient, vasopressor support, IV fluids, broad-
spectrum antibiotics
*Transfusionevaluation: Stop transfusion, maintain IV line, send fresh blood sample, blood unit,
and administration set to blood bank.
DAT direct antiglobulin test (direct Coombs); Hct hematocrit; LDH lactate dehydrogenase;
RBCs red blood cells.
Dehydration and Fluid Support

Severity of Dehydration
If not hypernatremic (high Na), initially rehydrate with NSS. Use D5 1/2 NS with KCL if
hypernatremic.
• Mild: < 5% loss, mostly normal clinical findings, 40-50 ml/kg fluid deficit or less
• Moderate: 5-10% loss, tachycardia, normotensive or hypotensive, reduced dark urine, urine
specific gravity of 1.030, high bun, dry mucosa, 60-90 ml/kg fluid deficit
• Severe: > 10% loss, thready pulse, hypotensive, minimal urine output, urine specific gravity >
1.035, very high bun, very dry mucosa, 100 ml/kg fluid deficit or more
Maintenance Fluid Requirement
• Commonly Used Maintenance Fluids
Adult: D5 1/2 NS with 20 meq KCL/ liter; Child: D5 1/4 NS with 20 meq KCL/ liter
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• 24 Hour Maintenance Fluid Requirement
Adult: 4 ml/kg for the first 10 kg of body weight + 2 ml/kg for the next 10 kg + 1 ml/kg for every
additional kg above 20 kg.
Child: May also use the method for adults; or the following method: 100 ml/kg/day for the first
10 kg of body weight + 50 ml/kg/day for the next 10 kg + 20 ml/kg/day for every additional kg
above 20 kg. To get the hourly rate, divide the daily rate by 24.
Infection, Fever and Antimicrobial Treatment

Infection in the Compromised Host
Pulmonary Infections
• Determine if the infection is community or hospital acquired. Rule out noninfectious causes of
pulmonary infiltrates, e.g. radiation pneumonitis, drug-induced pneumonitis, pulmonary
embolism, etc. Evaluation may include: repeated sputum examinations (not sensitive especially
in compromised, neutropenic host), serology (not very helpful for acute infection), blood
cultures, CT scan (for neutropenic hosts with a normal chest xray), thoracentesis (for effusion).
Management includes the use of appropriate antimicrobial therapy.
CNS Infections
• Infections may manifest as changes in sensorium, cognition, or motor function; seizure, or even
coma. The presence of meningismus helps in the diagnosis, but this may be absent in a
compromised host. MRI may be used if cerebral edema, abscess, encephalitis are suspected.
Management of meningitis or brain abscess includes the use of appropriate antimicrobial
therapy.
Skin Infections
• Tumors of the skin can become infected.Neutropenic patients may have skin infections with
minimal physical signs. Cell medicated immunity deficiency is associated with infections due to
VSV or HSV. Management includes the use of appropriate topical and/or systemic antimicrobial
therapy, and proper skin care.
Gastrointestinal and Abdominal Infections
• Gastroenteritis and colitis may occur. Common liver infections include: viral hepatitis, and
abscess (due to systemic bacterial or fungal infection). Perirectal abscesses can occur in
neutropenic patients. Intraabdominal abscesses m,ay develop from gastrointestinal or
genitourinary tract obstruction, perforation, or necrosis. Esophagitis may be due to due to fungal
(Candida) or viral (HSV) infection. Management requires the use of appropriate therapy.
Urinary Tract Infections
• UTIs are common in patients with advanced disease due to bladder dysfunction, urinary
obstruction, use of urinary catheters, and prolonged and repeated hospitalizations. Common
infections include gram negative bacteria, and Candida. Management includes the use of
appropriate antimicrobial therapy.
Central Line Infections
• Most central line infections are caused by Staphylococcus species. Many can be treated with
antibiotics (such as vancomycin, or oxacillin IV) without the need to remove the central line.
However, consider removing the central line for: tunnel infections, fungal infections, bacteremia
that persists beyond 24 hrs of therapy, gram negative bacteria, Bacillus, diphtheroids, or exit
site infections due to Pseudomonas. Management includes the use of appropriate antimicrobial
therapy.
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Parasitic Infections
• Parasitic infections include: toxoplasmosis, strongyloidiasis, giardia, malaria, babesiosis,
cestodes (cysticercosis, echinococcosis), and ehrlichiosis.
Fungal Infections
• Fungal infections include: cryptococcosis, candidiasis, aspergillosis, and zygomycosis. Therapy
for systemic fungal infections may involve the use of fluconazole and itraconazole (primary
choices for initial treatment), and Amphoterecin B (for severe fungal infections which do not
respond to fluconazole or itraconazole).
Viral Infections
• Viral infections include: EBV, CMV, Herpes zoster, HSV, parvovirus, and HPV.
Other Bacterial Infections
• Other bacterial infections include: Mycobacteria (M. tuberculosis, M. avium complex, M.
kansasii), norcardia, listeria, ligionella pneumophila, salmonella, and helicobacter pylori.
Management includes the use of appropriate antimicrobial therapy.
• Evaluation of suspected Mycobacteria infection may require a chest radiograph; tuberculin skin
test; and stain/microscopy, PCR, or culture of the sputum, blood, or other samples from
pulmonary and extrapulmonary sites. Management includes the use of appropriate
antimycobacterial therapy.
Sepsis
• Sepsis is a systemic inflammatory response to infection. A Systemic Inflammatory Response
Syndrome (SIRS) is manifested by 2 or more of the following: 1) temperature >38C or <36C, 2)
heart rate>90 beats/min, 3) respiratory rate>20 breaths/min or PaCO2<32 mm Hg, 4) WBC
12000/mm3, <4000/mm3, or >10% immature (band) forms.
• Severe sepsis is characterized by organ dysfunction, hypoperfusion (manifested by oliguria,
lactic acidosis, mental status changes, etc), or hypotension. Septic shock is sepsis induced
hypotention despite adequate fluid resuscitation, along with evidence of hypoperfusion.
Management
• Management of infection
Obatain appropriate cultures before starting antibiotics. At least one blood culture sample
should be obtained percutaneously; others drawn through each vascular access device that has
been in place for > 48 hrs. Ideally, start antibiotics within the first hours of when sepsis is first
recognized. Begin with broad-spectrum coverage. The antimicrobial regimen should be
reassessed after 48 to 72 hours. Once the causative organism and its susceptibility is known; a
narrow-spectrum antibiotic can be substituted to prevent the development of resistance, reduce
toxicity, and minimize costs.
• Management of hypoperfusion and shock
Early management should be started on patients with evidence of hypoperfusion; targets
include mean arterial pressure of 65 mm Hg or higher, central or mixed venous oxygen
saturation of 70% or higher, and urine output of 0.5 ml/kg/hr or higher, and central venous
pressure between 8 and 12 mm Hg. Start fluid resuscitation immediately. Crystalloids or colloids
can be used. If early fluid therapy does not reach above oxygen saturation targets, red blood
cell transfusion or dobutamine should be considered. Dobutamine use may also be appropriate
for patients with low cardiac output despite fluid resuscitation. Vasopressors should be added if
blood pressure or organ perfusion remains low. Either norepinephrine or dopamine can be
used; vasopressin can be added for patients with refractory shock. Once tissue hypoperfusion
has resolved, red blood cell transfusions should be used only when hemoglobin decreases to a
level below 7.0 g/dL or extenuating circumstances (eg, acute hemorrhage) are present.
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Erythropoietin should not be used to treat anemia due to sepsis unless another reason for its
use is present.
• Blood glucose control
Levels ideally kept within the 80- to 110-mg/dL range improves outcomes. However, many
hospitals may not have the resources to adhere to this stringent standard. Once the patient is
stabilized, blood glucose levels should at least be maintained below 150 mg/dL.
• Antithrombotic therapy
Recombinant human activated protein C may be considered for sepsis patients who are at high
risk of death, as long as no absolute contraindications to its use are present, or relative
contraindications do not outweigh potential benefit. Contraindicated in patients with known
sensitivity to the drug, and patients who are at risk of death or significant complications due to
severe bleeding, e.g. patients with active internal bleeding, hemorrhagic stroke within 3 months,
intracranial / intraspinal surgery or head trauma within 2 months, any increased risk of life
threatening bleeding, intracranial mass lesion, or epidural catheter.
• In patients with acute renal failure, intermittent hemodialysis may be used.
• Begin prophylaxis for deep venous thrombosis (with unfractionated or low-molecular-weight
heparin and/or a mechanical device) for patients with severe sepsis. Similarly, prophylaxis
against stress ulcers (with H2 antagonists or proton pump inhibitors) should be given.
• Physicians need to discuss prognosis and its impact on care with sepsis patients and their
families. Decisions for less aggressive support or withdrawal of support may be in the patient’s
best interest.
Fever
Fever may be due to infectious or non-infectious causes. Patients with fever should be evaluated
for infection. Infection may also occur without fever in cachetic and debilitated patients, and
patients on corticosteroids, acetaminophen, NSAIDs, or COX-2 inhibitors.
Causes of nan-infectious fever include:
• Cancer (neoplastic fever): resolves if and when the cancer responds to treatment. Some
commonly associated malignancies include lymphoma, leukemia, primary or metastatic liver
cancer, osteosarcoma, and renal cell cancer.
• Adverse effect of treatment: chemotherapy (eg cisplatin, bleomycin, interferon), colony
stimulating factors, radiotherapy (causing pericarditis, pneumonitis), blood transfusion, drug
allergy
• CNS diseases: CNS primary or metastatic cancer, stroke
• Dehydration
• Adrenal insufficiency (eg due to corticosteroid withdrawal)
General Management
• Sponge bath. Environmental temperature management. Comfortable, cool clothing.
• Encourage adequate fluid intake.
• Acetaminophen/ Paracetamol (A: 500 mg C: 10 mg/kg PO qid)
• NSAIDs (eg naproxen A: 250-500 mg C: 5-10 mg/kg PO bid) may relieve neoplastic fever;
however, they may cause significant adverse effects (eg GI, renal, bleeding problems)
especially in debilitated patients, and those at risk.
Fever in a Neutropenic Patient (Hughes et al, 2002)

• Fever is defined as a single oral temperature of at least 38.3°C (101°F) or a temperature of at
least 38.0°C (100.4°F) for at least 1 h. Neutropenia is a neutrophil count of <500 cells/mm3, or
a count of <1000 cells/mm3 with a predicted decrease to <500 cells/mm3. Fever in a patient
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with neutropenia requires prompt empirical management for a possible infection, until proven
otherwise. Neutropenia increases the the risk of severe bacterial, and fungal infection.
Initial Evaluation
• Do a thorough history and physical examination.
• Symptoms and signs may be minimal or absent, especially if anemia is also present. For
example: skin infections without typical cellulitis, pulmonary infections without infiltrates on a
radiograph, meningitis without leukocytosis in the CSF, and urinary tract infections without
pyuria. Investigate subtle signs and symptoms, such as pain at commonly infected sites
(periodontium, pharynx, lower esophagus, lung, perineum, anus; and the skin, including bone
marrow aspiration sites, vascular catheter access sites, and around the nails).
• Tests may include: a complete blood cell count, creatinine, urea nitrogen, transaminases, and
blood cultures (obtained from a peripheral vein and/or a catheter). Tests should be done at least
every 3-4 days during the course of intensive therapy. A chest xray is indicated for patients with
respiratory signs or symptoms. Note however that, CT scans can detect pneumonia in more
than half of febrile neutropenic patients with normal chest xray findings. Fluid or tissue samples
of infected sites may be needed for cytologic testing, Gram staining, and culture.
Initial Antibiotic Therapy .
• Gram-positive bacteria account for as much as 60% 70% of infections; but the incidence of
gram-negative infections is increasing.
• Some gram-positive bacteria may be methicillin resistant and susceptible only to vancomycin,
teicoplanin, quinupristin-dalfopristin, and linezolid.
• Consider empirical vancomycin for: suspected IV access infection, colonized by MRSA
(Methicillin Resistant Staph Aureus) or DRSP (Drug Resistant Streptococcus Pneumoniae),
blood culture positive for Gram positive cocci, hypotensive patient
• Consider the type, frequency of occurrence, and antibiotic susceptibility of bacterial isolates in
the community or hospital (for hospital acquired infections). The use of certain antibiotics may
be limited by factors such as drug allergy or organ (e.g., renal or hepatic) dysfunction. Vascular
access devices (eg subcutaneous ports) may be left in place during antibiotic treatment for most
patients, even if infection of a local entry site or catheter-related bacteremia is detected. S.
aureus and coagulase-negative staphylococci are the most common causes of catheter-
associated infections, and these often respond to treatment with parenteral antibiotics without
removal of the catheter.
• Consider cost. Patient should be able to afford the entire cost of treatment. Antibiotics which are
not too costly include: oral medications (eg ciprofloxacin, amoxicillin-clavulanic); IV
ceftriaxone/ceftazidime/gentamicin/amikacin.
Oral Route
• For low-risk patients (stable, has 24 hr access to medical care, compliant to follow-up and
treatment, no hypotension, no focal findings of severe infection, no respiratory compromise, no
severe cardio respiratory disease/s, age greater that 16 and less than 55)
Consider agents or combination of agents that covers the most likely pathogens.
--- Ciprofloxacin + amoxicillin-clavulanate may provide a fairly broad coverage.
--- Levofloxacin +/- metronidazole (for additional anerobic coverage)
--- Oral 3rd or 4th generation cephalosphorins are also used, especially in children; however
they provide a narrower coverage and a second agent may be needed for better coverage.
Parenteral Route
If Vancomycin is Not Indicated
--- Monotherapy:
May use a cephalosporin with anti-pseudomonas activity (eg ceftazidime, or cefepime),
antipseudomonal penicillin (piperacillin-tazobactam), or carbapenem (meropenem, imipenem).
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Levofloxacin can also provide a fairly broad coverage, and anti-pseudomonas activity at higher
doses. If pseudomonas infection is less likely, and cost is a concern then other agents with
fairly broad coverage may be considered (eg ceftriaxone, ampicillin-sulbactam).
--- Combination Therapy:
Add an aminoglycoside to the cephalosporin with anti-pseudomonas activity (eg ceftazidime, or
cefepime), antipseudomonal penicillin (piperacillin-tazobactam), or carbapenem (meropenem,
imipenem). If pseudomonas infection is less ikely, and cost is a concern then other agents with
fairly broad coverage may be considered (eg ceftriaxone, ampicillin-sulbactam).If the patient
cannot use or tolerate aminoglycosides, then aztreonam or a fluoroquinolone (eg ciprofloxacin)
may be used instead.
• If Vancomycin is Indicated
Vancomycin is combined with 1 or 2 antibiotics:
Vancomycin plus cefepime or ceftazidime, with or without an aminoglycoside
Vancomycin plus carbapenem, with or without an aminoglycoside
Vancomycin plus antipseudomonal penicillin plus an aminoglycoside
Ototoxicity and nephrotoxicity are rare unless it is combined with an aminoglycoside.
Modification of Therapy during the First Week of Treatment
• If Fever Resolves in 3 5 days of Antibiotics:
--- If an etiologic agent is identified, adjust therapy to the most appropriate antibiotics.
--- If no etiologic agent is identified and if the patient is at low risk, and oral antibiotics were
used, continue use of the same antibiotics.
--- If the patient was at low risk, and intravenous antibiotics were used, the IV antibiotics may
be changed after the patient remains afebrile for 48 h to an oral regimen (e.g. ciprofloxacin plus
amoxicillin-clavulanate for adults or cefixime for children).
--- If the patient is at high risk (including most patients with advanced disease) and intravenous
antibiotics were used, continue use of the same IV antiobiotics for 7-10 days before changing to
an oral regimen.
• If fever persists beyond 3 5 days:
--- If there is no clinical worsening, continue use of the same antibiotics; stop vancomycin if
cultures do not yield organisms.
--- If there is clinical worsening or fever continues for 3-5 more days, consider repeating
cultures and other appropriate tests, and change antibiotics.
--- If the patient is febrile after 5 days, consider adding an antifungal drug (e.g. fluconazole
PO/IV), with or without a change in antibiotic regimen. If evidence of possible fungal infection is
present (eg mucositis, esphagitis), consider empiric antifungal treatment earlier.
Duration of Antibiotic Therapy
• Patient is afebrile in 3-5 days:
--- If the patient's neutrophil count is greater than 500 cells/mm3 for at least 2 consecutive
days, if there is no definite site of infection, and if cultures do not yield positive results, and if the
patient is low risk, stop antibiotic therapy when the patient is afebrile for at least 48 hrs.
--- If the patient's neutrophil count is less than 500 cells/mm3, if the patient is low risk, if there
is no definite site of infection, and if cultures do not yield positive results, stop therapy when the
patient is afebrile for 7 days.
--- If the patient's neutrophil count is less than 500 cells/mm3, if the patient is high risk, if there
is no definite site of infection, and if cultures do not yield positive results, continue entire course
of antibiotic therapy (usually 10-14 days).
• Persistent fever after 3-5 days:
--- If the patient's neutrophil count is greater than 500 cells/mm3, if there is no definite site of
infection, and if cultures do not yield positive results, stop antibiotic therapy at least 5 days after
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the neutrophil count is greater than 500 cells/mm3.
--- If the patient's neutrophil count is <500 cells/mm3, if there is no definite site of infection, and
if cultures do not yield positive results, reassess and continue antibiotic therapy for 2 more
weeks; then reassess and consider stopping therapy if no disease site is found.
--- Consider adding an antifungal drug (e.g. fluconazole PO/IV), with or without a change in
antibiotic regimen. If evidence of possible fungal infection is present (eg mucositis, esphagitis),
consider empiric antifungal treatment earlier. Continue to monitor the patient closely after the
antibiotics have been stopped.
Other Considerations
• Antiviral drugs are not recommended unless clinical or laboratory evidence of viral infection is
evident.
• Granulocyte transfusions are not recommended for routine use.
• Colony-stimulating factors are not recommended for routine use, but should be considered
for severe and worsening cases. These can decrease the duration of neutropenia.
Afebrile Neutropenic Patients

Prevention of infection
• General Measures: Handwashing by staff and caregivers, proper skin care, avoid or be
extremely careful with shaving, daily brushing of teeth, minimize interventions and procedures
that can introduce an infection
• Prohylactic antibiotics can theoretically lower the endogenous flora which causes majority of
infections. Quinolones reduces the occurrence of gram negative bacteremia. Use of quinilones
or TMP-SMX delays the onset of fever during periods of neutropenia. Inappropriate use of
antibiotic prophylaxis should be avoided to prevent the emergence of antibiotic resistance.
Antifungal prophylaxis with fluconazole and antiviral prophylaxis with acyclovir or ganciclovir are
warranted for certain patients, e.g. those who are undergoing allogenic hematopoietic stem cell
transplantation.
Antimicrobial Drugs (Gilbert et al, 2007)

Aminopenicillins
• Amoxicillin: A: 0.5-1 g C: 10-15 mg/kg PO tid; A: 0.5-1 g C: 10-15 mg/kg IV q 8 hr; use higher
doses for severe infections; mainly Gram Pos
• Ampicillin: A: 0.5-1 g C: 10-15 mg/kg PO qid; A: 0.5-2 g C: 10-20 mg/kg IV/IM q 6 hr; use higher
doses for severe infections; mainly Gram Pos
Aminopenicillin + Beta-lactamase Inhibitor
• Amoxicillin-Clavulanate: Oral: A: 500/125 mg PO tid, or 875/125 mg PO bid; C: 10-12 mg/kg of
the amoxicillin PO tid; Parentral: A: 1 g/200 mg C: 30 mg/kg of the amoxicillin IV q 6-8 hrs; for
Gram Pos, Gram Neg, Anaerobes
• Ampicillin-Sulbactam: Parenteral: A: 1 g/500 mg C: 30 mg/kg of the amoxicillin IV q 6-8 hrs; for
severe infection, increase dose by 1.5-2 times q 6hrs; for Gram Pos, Gram Neg, Anaerobes
Penicillinase-Resistant Penicillins
• Cloxacillin: A: 500 mg C: 10-15 mg/kg PO qid; for Gram Pos
• Oxacillin: A: 500 mg C: 10-12 mg/kg IV q 6 hrs; for Gram Pos
Anti-Pseudomonal Penicillins
• Piperacillin-Tazobactam: A: 2-4 g of piperacillin C: 50-60 mg/kg of piperacillin IV q 6-8 hrs; for
Gram Pos, Gram Neg, Anaerobes; anti-Pseudomonas activity
• Ticarcilllin-Clavulanate: A: 3 g of ticarcillin C: 60-80 mg of ticarcillin IV q 6-8 hrs; for Gram Pos,
Gram Neg, Anaerobes; anti-Pseudomonas activity
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Cephalosphorins
• First Generation Cephalosphorins
• Cephalexin: A: 0.5-1 g C: 10-20 mg/kg PO q 6 hrs; mainly Gram Pos, some Gram Neg
• Cefazolin: A: 1-2 g C: 30-40 mg/kg IV/IM q 8 hrs; mainly Gram Pos, some Gram Neg
• Second Generation Cephalosphorins
• Cefuroxime: A: 750-1500 mg C: 20-30 mg/kg PO/IV/IM q 8 hrs; for severe infections, A: 1.5-3 g
C: 30-60 mg/kg IV q 8 hrs; for Gram Pos, Gram Neg
• Cefoxitin: A: 1-2 g C: 30-40 mg/kg IV/IM q 6 hrs; for Gram Pos, Gram Neg, better Anaerobic
activity compared to other cephalosphorins
• Third Generation Cephalosphorins
• Ceftriaxone: A: 1-2 g C: 50 mg/kg IV/IM q 24 hrs; for severe infections, may give same doses q
12hr; for Gram Pos, Gram Neg, some Anaerobes
• Ceftazidime: A: 1-2 g C: 30-40 mg/kg IV/IM q 8 hrs; for Gram Pos, Gram Neg, some
Anaerobes; with anti-pseudomonas activity
• Cefixime: A: 100-200 mg C: 2-4 PO bid; for Gram Pos, Gram Neg, some Anaerobes
• Fourth Generation Cephalosphorins
• Cefepime: A: 1-2 g C: 50 mg/kg IV/IM q 12 hrs; for severe infection, give q 8 hrs; for Gram Pos,
Gram Neg
Folate Antagonists
• Co-Trimoxazole (Trimethoprim-Sulfamethoxazole): Dose: 4-5 mg/kg of trimethoprim PO/IV q 12
hrs; for severe infection give 4-5 mg/kg IV q 6 hrs; some Gram Pos, Gram Neg
Fluoroquinolones
• Due to initial findings of joint cartilage injury due to fluoroquinolones in immature animals use in
pediatric patients has been limited. However, except for short-term moderate myalgia and/or
arthralgia during the course of treatment, studies on the use of quinolones in children have so
far shown no significant joint injuries.
• Ciprofloxacin (A: 500-750 mg C: 10 mg/kg PO bid; A: 400 mg C: 8 mg/kg, max: 400 mg, IV q 8
hrs); mainly for Gram Neg; use higher dose for severe infection, or pseudomonas infection.
• Levofloxacin (A: 500-750 mg C: 10 mg/kg PO qday; A: 500-750 mg C: 10 mg/kg, max 500 mg,
IV qday); for Gram Pos, Gram Neg; use higher dose for severe infection.
• Norfloxacin (A: 400 mg C: 8 mg/kg PO bid); mainly for Gram Neg
Aminoglycosides
• While on aminoglycosides, monitor the kidney function; check bun/ creatinine, urine (proteins,
cells, casts, decreased specific gravity). If there is evidence of kidney impairment
(nephrotoxicity), or auditory or vestibular impairment (ototoxicity), discontinue the drug or modify
the dose. Try to give aminoglycosides < 7-10 days to avoid toxicity; for longer duration
treatment, monitor closely, and consider checking levels. If the patient’s clinical status and/or
kidney function is changing/ worsening, check the levels earlier.
• Checking serum levels: peak (1 hr after dose), and trough (before dose)
• Multiple Daily Dosing (MDD)
MDD doses and Target Levels: (for normal kidney function/ normal creatinine clearance):
Gentamycin (loading dose: 2 mg/kg; maintenance dose 1.5 mg/kg/dose IV/IM q 8 hrs)
peak (4-10 mcg/ml); trough (1-2 mcg/ml)
Amikacin (loading dose: 7.5 mg/kg; maintenance dose 5 mg/kg IV/IM q 8 hrs); more
expensive than gentamicin, but more potent and less nephrotoxic
Netilmicin (loading dose: 2.5 mg/kg; maintenance dose 2 mg/kg/dose IV/IM q 8 hrs)
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• Once Daily Dosing (ODD)
Once daily dosing of aminoglycosides can also be done. This simplifies the regimen, and may
even moderately decrease the risk of nephrotoxicity.
ODD doses and Target Levels: (for normal kidney function/ normal creatinine clearance):
Gentamycin (5 mg/kg/dose IV/IM q 24 hrs); peak (16-24 mcg/ml); trough (<1 mcg/ml)
Amikacin (15 mg/kg/dose IV/IM q 24 hrs); peak (56-64 mcg/ml); trough (<1 mcg/ml)
Netilmicin (6.5 mg/kg/dose IV/IM q 24 hrs); peak (22-30 mcg/ml); trough (<1 mcg/ml)
• Aminoglycoside Dosing Adjustment for Kidney Insufficiency
Dose (mg/ kg) adjustment based on Creatinine Clearance
Drug Creatinine Clearance (ml/ min)
> 80 60-80 40-60 30-40 20-30 10-20 < 10
q24 hr or divide by 3 q8 hr q48 hr or divided by 2 q24 hr
Gentamicin 5 4 3.5 2.5 4 3 2
Amikacin 15 12 7.5 4 7.5 4 3
Netilmicin 6.5 5 4 2 3 2.5 2
Nitroimidazole
• Metronidazole: A: 500-750 mg C: 10-15 mg/kg PO q 8 hrs; for Anaerobes and Protozoa (eg
ameba, trichomonas)
Lincosamide
• Clindamycin: A: 150-450 mg C: 3-5 mg/kg PO/IV q 6hrs; A: 600-900 mg C: 6-10 mg/kg IV/IM;
give over 45-60 min to avoid hypotension; for Anaerobes, Gram Pos; IV concentration not to
exceed 18 mg/ml; risk of pseudomembranous colitis (infrequent in children compared to adults)
• Lincomycin: A: 500 mg C: 10 mg/kg PO q 6hrs; A: 600 mg C: 12-15 mg/kg IV/IM q 8 hrs; for
Anaerobes, Gram Pos; risk of pseudomembranous colitis (infrequent in children compared to
adults)
Monobactam
• Aztreonam: A: 1-2 g C: > 2yr= 50 mg/kg, < 2yr= 30 mg/kg IV q8 hrs; for Gram Neg; can be used
instead of aminoglycosides- especially in kidney failure
Carbapenem
• Meropenem: A: 0.5 g-1 g C: 15-20 mg/kg IV q 8 hrs; for Gram Pos, Gram Neg, Anaerobes; anti-
Pseudomonas activity
• Imipenem-Cilastin: A: 0.5 g-1 g C: 10-15 mg/kg IV q 8 hrs; slow IV or infusion to avoid seizures;
for Gram Pos, Gram Neg, Anaerobes; anti-Pseudomonas activity
Glycopeptides
• Vancomycin: A: 500 mg C: 10 mg/kg IV q 6hr; or A: 750 mg C: 15 mg/kg IV q 12 hr; Gram Pos,
some Anaerobes; usually used for s. aureus and enterococcus; for MRSA (methicillin resistant
s. aureus); Infuse slowly in 1-2 hrs; infusion less than 1 hr may cause a non-specific histamine
release, resulting in angioneurotic edema and flushed skin (“red neck syndrome”). Consider
measuring serum levels if: changing kidney function, kidney failure, or on dialysis.
Target levels: peak (20-50 mcg/ml), trough (5-10 mcg/ml)
Oxazolidinone
• Linezolid: A: 600 mg PO/IV q 12 hrs; C: <12 yrs=10 mg/kg PO/IV q 8 hrs, >12 yrs=10-12 mg
PO/IV q 12hrs; mainly Gram Pos, some Anaerobes and Mycobacteria; also used for MRSA and
VRE (vancomycin resistant enterococci); risk of myelosuppression if used > 2wks (check CBC)
Antifungal drugs
• Fluconazone: A: 200-400 mg C: 6-10 mg/kg PO/IV qday
• Voriconazole: Loading: 5-6 mg/kg q 12hr x 2 doses; Maintenance: 3-4 mg/kg q 12 hrs; PO/IV
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• Itraconazole: A: 100-200 mg C: 2-4 mg/kg PO q day
• Amphoterecin B: 250 mcg/kg IV q 48-72 hrs; increase by 250 mcg/kg until desired dose is
reached- 1 mg/kg for severe infections; slow IV infusion over 4-6 hrs; for progressive, potentially
fatal fungal infection
Antivirals
• Acyclovir: A: 200-400 mg C: <2 yr= half of adult dose, >2yrs= use adult dose PO qid
• Ganciclovir: Dose: 5 mg/kg IV q 12 hrs; infuse IV over at least 1 hour
Metabolic and Electrolyte Disorders
Hypercalcemia
Corrected serum Ca > 10.6 mg/dL (or 2.65 mmol/L); or ionized Ca>5.0 mg/dL.
Early symptoms
• polyuria, nocturia, polydipsia, dehydration, anorexia, easy fatigability, weakness
Late symptoms
• apathy, irritability, agitation, confusion, depression, decreased ability to concentrate,
somnolence, mental obtundation, coma; severe weakness; nausea, vomiting, abdominal pain,
constipation, gastric hyperacidity, acute pancreatitis; pruritus; visual problems
• Treat hypercalcemia if the patient is symptomatic and has an adequately long prognosis. In
paliative care, the main desired outcome of treatment is the improvement in symptoms.
• Correction of calcium is not expected to improve cognitive failure that precedes hypercalcemia.
Corrected serum calcium
• Adjust the serum calcium according to the serum albumin.
Corrected serum calcium (mmol/L) = measured calcium + [(40-measured albumin) x 0.02].
For example, a patient’s measured calcium level is 2.4 mmol/L and the serum albumin is 20
Therefore, the corrected serum calcium is 2.4 + [(40-20) x 0.02] = 2.4 + 0.4 = 2.8 mmol/L
Note: The traditional U.S. measurement of mg/dl is four times larger than mmol/L. Therefore,
2.4 mmol/L S traditional U.S. measurement of 9.6 mg/dL and 2.8 mmol/L = 11.2 mg/dL.
Causes
• Bone destruction, bone metastasis, hyperparathyroidism, PTH-related protein causing humoral
hypercalcemia of malignancy, calciriol producing lymphomas, granulomatous disease,
medications (thiazide diuretics, vitamin A and D, lithioum, theophylline, estrogens, anti-
estrogens), endocrinopathies (hyperthyroidism, adrenal insufficiency, VIP-producing tumor,
pheochromocytoma, acromegaly), Paget’s disease, and Milk-alkali syndrome.
Tests
• Tests may include: serum calcium, phosphate, albumin, alkaline phosphatase (if elevated,
consider metastasis to bone or liver, or hyperparathyroidism), electrolytes, BUN, creatinine
(hypercalcemia may lead to dehydration, and azotemia), CBC. ECG may show shortening of Q-
T interval, and prolongation of P-R interval. Xrays may show nephrolithiasis, nephrocalcinosis,
osteopenia and subperiosteal reabsorption (especially in hyperparathyroidism). PTH (elevated
levels may indicate concomitant hyperparathyroidism; low or low-normal levels may indicate
humoral hypercalcemia of malignancy.
Surgical exploration for primary hyperparathyroidism
• This may be considered in the palliative care setting if: clinical findings strongly suggest
concomitant primary hyperparathyroidism, hypercalcemia is severe, life expectancy is relatively
long, and surgical risk is acceptable.
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Management
Acute Mild Hypercalcemia
• Hydration: Increase PO fluids. Hydrate with normal saline with KCL (10 meq/L) at a rate of (A:
hypodermoclysis at 100 mL/h, or IV at 100-120 mL/h, C: consider 1.5-2.5 times calculated
maintenance for child).
• Diuresis: After fluid and volume deficits have been corrected, give a diuretic to enhace calcium
excretion (caliuresis), such as furosemide (A: 20-80 mg, C: 2-3 mg/kg, PO/IV/IM, bid-qid, or
bumetanide (1 mg bumetanide=approx 40 mg furosemide, PO/IV/IM).
• Monitor fluid intake and output, body weight, and serum calcium, potassium, and magnesium
q8-12 hr.
Moderate to Severe Hypercalcemia
• Hydration and Diuresis as described above. More aggressive hydration and diuresis requires
adequate cardiac and renal function; and close intensive monitoring.
• Bisphosphonates inhibit osteoclast activity. For mild cases not responding to above measures,
or for moderate cases, a one-time dose of a bisphosphonate may be adequate.
Bisphosphonates can exacerbate renal failure. Prior to administering a bisphosphonate, assess
renal function (urea + creatinine blood levels). If prerenal azotemia is present (blood urea
nitrogen >20 x creatinine), rehydrate the patient with normal saline prior to administering
bisphosphonate.
--- Pamidronate (A: Ca=12-13.5 mg/dl=60 mg given over 4-6 hours, Ca=>13.5 mg/dl=90 mg
given over 24 hours, diluted in 500-1000 mL of normal saline, IV. C: Mild hypercalcemia=0.5-1
mg/kg/dose.Severe hypercalcemia=1.5-2 mg/kg/dose, diluted in NS, IV). Cannot be given SC.
Caution in kidney disease. Give adequate hydration, and longer infusion times to avoid toxicity.)
--- Clodronate 1,500mg diluted in 500—1000 mL of normal saline and given IV over 4—6
hours.
• Calcitonin inhibits bone resorption and increases renal calcium clearance. It is a temporary
option for patients with severe symptoms needing rapid reduction in symptoms while being
hydrated or treated with a bisphosphonate. Consider Calcitonin (salmon calcitonin A: 50—100
U or 4 U/kg/dose, C: 1-2 U/kg/dose, IM/SC q 12 hours, if unsatisfactory response in 1-2 days,
then give 1.5-2 times initial dose. Intranasal spray gives 200 U/spray).
• Dialysis, peritoneal or hemodialysis, can rapidly lower calcium levels.
Chronic Hypercalcemia
• Ambulation minimizes bone resorption due to immobilization.
• Increased fluid intake (at least 2-2.5 L/day)
• Avoid calcium containing food, e.g. milk products
• Avoid thiazide diuretics that may worsen hypercalcemia
• Glucocorticoids such as: Dexamethasone (A: 4-8 mg, C: 0.5-1 mg/kg/dose, PO/IV/IM/SC qd-
bid), Hydrocortisone (5 mg/kg, IV, q 8 hrs), Methyprednisolone (0.5 mg/kg, IV, q 12-24 hrs), or
Prednisone (A: 20-60 mg, C: 0.5-1 mg/kg/dose, PO, qd-bid). Steroids are useful especially for
bone metastasis.
• Phosphates bind calcium in the GI tract. Different phosphate salts can be used.
• Prostaglandin inhibitors, such as indomethacin, may be tried for refractory cases, but effects are
variable and inconsistent.
Hypocalcemia
• Corrected serum Ca<8 mg/dL (2 mmol/L) or ionized Ca<4.0 mg/dL (1 mmol/L).
• Low levels of calcium in the blood may result in severe cardiovascular effects and
neuromuscular irritability with seizures, hallucinations, numbness, weakness, cramping,
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paresthesia, and laryngospasm. Facial twitching with percussion of the facial nerve (Chvostek’s
sign). Carpopedal spasm after arterial occlusion of an extremity for 3 minutes ( Trousseau’s
sign).
Causes
• Hypoparathyroidism, or parathyroid suppression (surgery of parathyroid or thyroid, cancer
infiltration of gland, irradiation, idiopathic), Vit D deficiency (malnutrition, malabsorption
[pancreatitis, gastrectomy, short gut syndrome, laxative abuse, sprue, hepatobiliary disease],
liver disease, kidney disease, drugs [Phenobarbital, phenytoin]), Ca loss or displacement
(hyperphosphatemia[acute ingestion, rhabdomyolysis, tumor lysis], kidney failure), acute
pancreatitis, osteoblastic metastasis [esp breast and prostate cancer], increased calcitonin due
to medullary cancer of the thyroid, drugs [calcitonin, mithramycin, actinomycin], sepsis, massive
transfusion, toxic shock syndrome, fat embolism).
Tests
• Determine Ca (Corrected serum calcium = measured serum calcium + [(40-measured serum
albumin) x 0.02]), phosphorous (decreased in Vit D deficiency), alkaline phosphatase,
magnesium, albumin, BUN, Cr, CBC, PTH (may be increased), 25-OH Vit D. ECG may show
prolonged QT interval, T wave inversion, and arrythmias.
Management
• Check for tetany, manifested by paresthesias (esp numbness and tingling of the face, hands,
and feet), which can progress to muscle cramps, fatal laryngospasm and seizures. If present,
start acute treatment (see below) while waiting for confirmatory lab results.
Acute Management
• Needed for Ca below 1.5 mmol/L (6 mg/dL, 3 mEq/L). May require close intensive monitoring.
Regularly check serum Ca, q 2hr, until levels are >7mg/dL
• IntravenousCalcium: (monitor for bradycardia and hypotension during administration; not
compatible with bicarbonate).
--- Ca gluconate: 10% ampule (100 mg/ml), contains 9.3 g elemental Ca per ml.
For IV push, A: 0.5-2 g/dose C: 50-100 mg/kg/dose, qid, max IV push: 50-100 mg/min. Initial IV
push/es may be followed by an IV Infusion: dilute to a max conc of 50 mg/ml and infuse rate
120-240 mg/kg/hr; then re-assess to determine need for subsequent doses.
--- Ca chloride: 10% ampule (100 mg/ml), contains 27.2 g elemental Ca per ml.
For IV push, A: 0.5-1 g/dose C: 10-20 mg/kg/dose, qid, max IV push: 50-100 mg/min. Initial IV
push/es may be followed by an IV Infusion: dilute to a max conc of 20 mg/ml and infuse rate 45-
90 mg/kg/hr; then re-assess to determine need for subsequent doses. Note: Extravasation can
cause skin sloughing.
• Treat hypomagnesemia (Mg <1.5 mg/dL) with Mg Sulfate (A: 1 g C: 20mg/kg, IM/IV, q4-8 hr,
until levels are normal). Max rate 150mg/min.(See Section on Hypomagnesemia)
Chronic management
• Patient may require PO Calcium (Ca carbonate/gluconate/glubionate/citrate/ lactate). Detemine
the amount of Ca per tablet (e.g. 240 mg Ca per 600 mg Ca carbonate). Requirement depends
on clinical condition, but is usually A: 1-3 g/day C: 45-65 mg/kg/day in 3-4 divided doses. Vit D
disorders also require Vit D supplementation.
Hyperkalemia
• Potassium >5.0 mmol or mEq/L
Severity
• Mild to moderate hyperkalemia: >5.0 mEq/L or rapid rate of rise
• Severe hyperkalemia: >6 mEq/L and rapid rate of rise or ECG changes.
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• Elevated levels of potassium can cause cardiac arrhythmias (bradycardia, ventricular fibrillation,
asystole) and neuromuscular dysfunction (eg muscle weakness, paralysis, hyperactive deep
tendon reflexes).
Causes
• Excessive potassium intake; trancellular shift (metabolic acidosis, cell death-rhabdomyolysis,
injury, burns, tumor lysis, transfusions); decreased renal excretion (kidney failure, volume
depletion, hypoaldosteronism; and drugs (K-sparing diuretics, ACE inhibitors, NSAIDs, TMP-
SMX).
Tests
• Serum potassium, Na (low in aldosterone deficiency), bicarbonate (low in metabolic acidosis),
BUN and creatinine (renal function), CBC (high WBC and/or platelets may ncause factitious
hyperK), creatinine phosphokinase – CK (rhabdomyolysis). Digoxin level and aldosterone level
if indicated.
• ECG should be obtained. Tall, peaked T waves in precordial leads (at 5-6 meq/L), PR interval
prolongation, decreased amplitude of P wave (at 6-7 meq/L), widened QRS (at 7-8 meq/L), then
the “sine wave” forms when QRS blends into the T wave (at 10 meq/L), then ventricular
fibrillation and asystole.
Management
• Provide ECG and cardiac monitoring. Ensure that potassium is removed from all IV fluids.
• If K is below 6.5 mmol/L and the patient is asymptomatic, recheck K, identify and manage
reversible cause/s, review current medications, stop or decrease the dose of medications that
can increase K (eg beta blocker, ACE-I, K supllements, NSAIDs), restrict K intake. May use
loop diuretics (eg furosemide), and/or potassium binding resins. Beta agonists may also be
added. (see doses below)
• If K is above 6.5 mmol/L, or at lower levels if cardiac or neuromuscular symptoms are present,
give calcium IV, glucose and insulin, and sodium bicarbonate +/- beta agonists +/- loop
diuretics. May require close intensive monitoring. Regularly check serum K, until levels are
normal.
• Calcium IV counteracts the effects of hyperkalemia on the heart; Ca gluconate: 10% ampule
(100 mg/ml) A: 1-2 g/dose C: 50-100 mg/kg/dose, qid, max IV push: 50-100 mg/min. Monitor for
bradycardia and hypotension during administration. If severe, may give 10% calcium gluconate,
100 mg/kg/dose IV over 3-5 min; may repeat in 15-20 min
• Dextrose (glucose) and insulin for cellular reuptake of K ( 3 g Glucose for every 1 U regular
insulin, e.g. A: 50 g dextrose for 15 U reg insulin C: 0.1 U/kg regular insulin IV with 2 mL/kg
25% glucose over 30 min.
• Sodium bicarbonate for cellular reuptake of K. (A: 1 ampule (44 mEq) C: 1-2 mEq/kg IV over 5-
10 min). Repeat if necessary.
• Diuretics to promote potassium excretion in the urine. Furosemide (A: 40-80 mg C: 0.5-2 mg/kg
IV q6-24h). Acts quickly in < 15 mins, for a duration of 1-2 hrs.
• Beta agonists promotes cellular reuptake. Albuterol/Salbutamol nebulization (A: 10-20 mg C:
0.15 mg/kg or 2.5-5 mg, nebulized, may repeat q20-30 min x 3)
Further Management
• Acute management measures do not lower total body K. Further management is needed to
lower body K.
• Potassium-binding resins bind to potassium and promote elimination through the bowel. Sodium
polystyrene resin (A: 40 g C: 1-2 g/kg with 3 mL sorbitol per gram resin PO q2-6h)
• Dialysis, peritoneal and hemodialysis, lower K in kidney failure.
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• Note: Sodium polystyrene resin contains sulfa, which induces an allergic reaction in sensitive
individuals. Calcium gluconate is not compatible with sodium bicarbonate. Infusions must be
separated by thorough flushing of the access line.
Hypokalemia
• Potassium<3.5 mmol or mEq/L
• May manifest as weakness or paralysis, ileus, mental status changes, and cardiac
dysrhythmias especially with digitalis.
• K (2.5-3.5 meq/L) results in weakness, cramps, constipation, mental stauts changes, and low
voltage QRS, flat T waves
K (2-2.5 meq/L) results in rhabdomyolysis, smooth muscle dysfunction (eg ileus), and prominent
U waves
K (<2 meq/L) results in widened QRS and ascending paralysis that can lead to respiratory
failure.
Causes
• Insufficient potassium intake (prolonged use of potassium-free IV fluid, malnutrition), shift of
potassium into the cell (alkalosis, drugs), renal losses (diuretics, steroids nad
mineralocorticoids, Mg depletion, metabolic acidosis, leukemia, medications, renal tubular
acidosis, interstitial nephritis), gastrointestinal losses (vomiting, nasogastric suction, diarrhea,
malabsorption, drugs (laxatives, chemotherapy, exchange resin), endocrine disorders
(mineralocrticoid excess, Bartter’s and Gitelman’s syndrome, diabetic ketoacidosis,
hyperthyroidism), and cutaneous losses (profuse sweating).
Tests
• Serum electrolytes including Mg (hypomagnesemia), BUN, Cr, glucose, bicarbonate and pH
(alkalosis), rennin, cortisol; urinalysis, and ECG. 24-hr urine studies are not very helpful if on
diuretics; but if not on diuretics, then low Na or Cl may indicate volume depletion, and elevated
K indicates renal loses. Check digoxin level if on digoxin (hypoK potentiates digoxin toxicity).
ECG may show U waves, PACs, PVCs, and/or severe ventricular arrythmias.
Management
• Treat the underlying cause/s if possible.
• Replace potassium. Rapidity of treatment and replacement depends on weight and the severity
of symptoms. It is rare to induce hyperkalemia if kidney function is normal, except when drugs
such as K-sparing diuretics, or ACE inhibitors are also used.
• IV Normal Saline is useful for chloride responsive hypokalemia.
• Potassium PO for asymptomatic, mild hypokalemia of K>3 mEq/L. Potassium Chloride PO (A:
30-120 mEq/day, C: 1-3 mEq/kg/day divided bid-qid). Decrease to maintenance dose once
hypoK is corrected and stabilized; usually A: 20-80 mEq/day C: 1-1.5 mEq/day.
• Potassium IV for those who cannot take PO, and for K<3 mEq/L.
Potassium Chloride IV (A: K>2.5 mEq/L=5-10 mEq, K 2-2.5=10-20 mEq, K<2 mEq/L=20-40
mEq; C: 0.2-0.4 mEq/kg/dose). This is usually diluted with 100 ml NSS for every 10 meq KCl;
and given at a rate of not faster than 10 meq/hr. If fluid needs to be restricted, and if rapid
correction is needed can also be given very cautiously as an infusion of 0.2-0.4 mEq/kg/hr x 1-2
hr; eg KCl 20 meg in 100 ml NSS can be given carefully in 1-2 hours via microdrip. IV burns and
scleroses veins, causes microvascular irritation and platelet aggregation; consider adding
lidocaine (1 mg/kg), heparin (10-20 U/kg), and hydrocortisone (5 mg).
• Correction of hypoK can also be done by giving the initial half of the KCl requirement IV, and
the remaining half can be given PO.
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• Monitor K closely, fatal arrhythmia may occur if given too rapidly. Cardiac monitoring if given at
a rate > 15-40 mEq/hr.
• K-rich foods.
• If refractory, check for hypomagnesemia and treat if present. Consider K sparing diuretic
(amiloride, triamtrene, and spironolactone).
Hyperphosphatemia
• Phosphate>4.5 mg/dl
• Compensatory hypocalcemia may coexist.
• May lead to kidney failure due to precipitation of Ca phosphate, or tetany due to hypocalcemia.
Causes
• Hypoparathyroidism, kidney failure, rapid tissue breakdown in muscle trauma and burn, tumor
lysis syndrome, and large doses of oral phosphate.
• May occur in the treatment of certain malignancies, especially leukemia and lymphoma. Tumor
lysis releases large amounts of phosphate. May manifest up to 2 days after beginning cancer
therapy, persist for 5 days, and may exceed 20 mg/dL).
Tests
• Serum phosphate, calcium, electrolytes every 4-6 hours.
Management
• Use all methods simultaneously until levels are below 5mg/dL.
• Aluminum hydroxide: 25 mg/kg/dose PO q4-6h. Limit to 1-2 days to avoid Al toxicity.
• Dextrose and Insulin. A: 20% dextrose and 10U/L regular insulin given at 50-100 ml/hr until
phosphate<7 mg/dL
• Hydration and volume expansion. Increase fluid intake. Urine output maintained at >3ml/kg/hr.
Consider Isotonic sodium chloride solution bolus and IV mannitol 0.25-1.0 g/kg IV push.
Dialysis
• Consider dialysis if Phosphate>10 mg/dL, or kidney failure.
Hypomagnesemia
• Magnesium<1.6 mg/dL
• Hypomagnesemia is clinically manifested by muscle cramps, nausea, weakness, anorexia,
depression, carpopedal spasm, or tetany.
• Hypocalcemia and hypokalemia may coexist with hypomagnesemia; refractory hypoCa or
hypoK should be tested for hypoMg. Mg is important for PTH’s metabolic function. Even with
normal PTH levels, PTH cannot exert its effect without adequate Mg. Replacement of
magnesium, usually results in rapid correction associated refractory hypocalcemia.
Causes
• Increased excretion (drugs: diuretics, ticarcillin, amphoterecin, aminoglycosides, platinum,
cyclosporine, vit D; alcoholism, diabetes, renal tubular disorders, hypercalcemia, hypercalciuria,
hyperaldosteronism, marked sweating), reduced intake and malabsorption (starvation, bowel
bypass or resection, total parenteral nutrition that lacks Mg, pancreatic insufficiency, chronic
diarrhea), acute pancreatitis, hypoalbuminemia. It can be due to renal tubular loss secondary to
platinum nephrotoxicity. Platinum nephrotoxicity can result in renal tubular dysfunction, which is
separate from the renal failure with platinum.
Possible Tests
• Mg, BUN, Cr, Ca, K. ECG may show atrial and ventricular ectopies, or torsades de pointes.
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Management
• If the magnesium level is less than 1.0 mg/dL, or if between 1.0-1.6 mg/dL and symptomatic,
use intravenous (IV) magnesium sulfate (A: 1-2 g/dose C: 25-50 mg/kg/dose, at a rate of 1g/hr,
repeat q 4-6 hrs as needed until level is corrected, Max: 2 g/dose).
• If the magnesium level is above 1.6 mg/dL, usually there are no significant problems yet. In
order to avoid magnesium from dropping further and creating problems, prophylactically
consider PO magnesium, such as Mg Oxide ( A: 400-800 mg/day C: 5-10 mg/kg/day, divided
bid-qid), or PO magnesium sulfate (30-60 mg/kg/day or 0.25-0.5 mEq/kg/day).
• During Mg therapy, monitor deep tendon reflexes- hyporeflexia suggests developing
hypermagnesemia.
Hypophosphatemia
• Phosphate<3 mg/dL
• Not as common as hypocalcemia and hypomagnesemia.
• Complications can be serious if hypophosphatemia is severe. Hemolytic anemia and severe
muscle weakness can occur.
Causes
• Rapidly growing tumors, malnutrition, malabsorption, alcoholism, alkalosis, diabetic
ketoacidosis, use of phosphate binders, renal phosphate loss; and use of platinum-based
regimens.
• When it is secondary to renal phosphate loss due to platinum, it frequently coexists with
hypocalcemia, hypomagnesemia, and hypokalemia.
Management
• Treatment depends on the severity.
• For moderate hypophosphatemia in the range of 1 to 2.5, give potassium phosphate or sodium
phosphate 0.08-0.16 mg/kg IV every 4 to 6 hours.
• For severe hypophosphatemia, less than 1.0, then give 0.25 mmol/kg IV over 4 to 6 hours.
• Some patients may require maintenance with oral phosphate to prevent recurrence.
Hyponatremia
• Sodium<135 mEq/L
• Symptoms primarily are neurologic. Anorexia, nausea, and malaise are the first overt findings,
which then progress to headache, confusion, lethargy, seizure, coma, and death.
• Gradual change in sodium concentration may be tolerated by the CNS, but rapid changes of 1-2
mEq/L/h lead to cerebral edema and neurologic dysfunction.
• Severe life-threatening symptoms are seen at a serum sodium concentration of less than 105
mEq/L, but these symptoms also may be seen if the level falls to 120 mEq/L within 24 hours.
Causes
• Severe hyponatremia, serum sodium level of less than 125 mEq/L, can result from systemic
illness, syndrome of inappropriate secretion of antidiuretic hormone (SIADH), or iatrogenic
factors.
• The presence of central nervous system metastasis, as well as pulmonary disorders, including
pneumonia or pulmonary metastasis, can produce inappropriate ADH secretion.
• Patients with diabetes insipidus may self-hydrate and cause hyponatremia.
• Hyponatremia in edematous states may result from liver disease, veno-occlusive disease,
infection, drug toxicity, or multiple other etiologies. Hyponatremia with volume depletion is less
common and is due to fluid losses, such as severe diarrhea, bleeding, and drainage of effusions
or ascites.
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• Overhydration with hypotonic solutions results in mild or moderate hyponatremia. Also, failure to
administer stress-dose levels of glucocorticoids to patients who are adrenally suppressed.
• Cyclophosphamide is commonly associated with impaired renal excretion of water. To a lesser
extent, vincristine, vinblastine, melphalan, and thiotepa have had similar effects.
Management
• For an asymptomatic patient, correct serum sodium at a rate of less than or equal to 0.5
mEq/L/h during the first 24 hours of intervention or 12 mEq/L total.
• A more rapid correction of 1-2 mEq/L/h in the serum sodium concentration is indicated only if a
patient is symptomatic. In symptomatic patients, rapid correction is indicated only for the first 1-
3 hours of therapy, with a goal to improve the serum sodium concentration 12-15 mEq/L in the
first 24 hours.
• In true hypovolemic hyponatremia, saline administration corrects hyponatremia and suppresses
ADH secretion. In patients with fluid retention, eg edema or ascites, treatment consists of salt
and water restriction, improvement of effective intravascular volume, and treatment of any
underlying disorder. Treat asymptomatic patients with SIADH with water restriction; hypertonic
3% saline 2-4 mL/kg/dose with or without furosemide 1 mg/kg should be considered if CNS
symptoms are present. For chronic SIADH, consider furosemide, with or without salt tablets.
Demeclocycline also induces nephrogenic diabetes insipidus and can be used if control of
SIADH is inadequate.
Hypoglycemia
• Hypoglycemia is a serum glucose level of less than 40 mg/dL (2.2 mmol/L) or a level that
begins to cause symptoms.
• Initial symptoms may occur at higher levels, particularly if the blood glucose level is decreased
rapidly. Symptoms may include weakness, dizziness, diaphoresis, and nausea; this may
progress to diffuse neurologic deficits, seizure, coma, and death.
Causes
• Hypoglycemia results from insulin-producing islet cell tumors that occur alone or as part of
multiple endocrine neoplasia syndrome, from tumor production of compounds with insulinlike
activity, adrenal insufficiency, decreased intake, or excessive glucose use because of cancer or
other diseases.
Management
• For mild hypoglycemia, increase the frequency of feedings.
• For severe or symptomatic hypoglycemia, consider IV 20-25% Dextrose (A: 50-150 ml/hr C: 1
ml/kg/hr then 10% at 2-3 ml/kg/hr). May consider corticosteroid and glucagon (A: 1 mg C: 0.03
mg/kg, IM, transient effect). Diazoxide is useful therapy for hyperinsulinemia.
Since irreversible CNS damage may result from prolonged severe hypoglycemia. Do not wait
for test results before starting treatment if severe hypoglycemia is suspected.
• Regardless of the type of treatment used in patients with chronic hypoglycemia, IV infusion of
dextrose-containing solutions provides only temporary support, and specific treatment of the
underlying cause provides definitive therapy.
Pericardial Effusion and Tamponade

• Common causes of large pericardial effusions that can lead to pericardial tamponade include:
cancer, tuberculosis, connective tissue disease, uremia, cardiac perforation, aortic dissection,
cholesterol pericarditis, and myxedema. Malignant pericardial effusion is commonly due to
tumor spread to lungs or mediastinum; and usually occurs with cancers of lung and breast,
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lymphomas, or leukemias. Malignant pericardial effusion is usually a preterminal event. Also
occurs with pericarditis (bacterial, fungal, tuberculous, uremic).
• Pericardial effusion may progress to pericardial tamponade. Symptoms and signs of pericardial
tamponade result from decreased cardiac output and venous congestion.
• Symptoms are similar to those of congestive heart failure and may include chest pain, dyspnea,
cough, orthopnea, weakness, and dizziness.
• Exam may reveal evidence of pericardial tamponade which includes: neck vein distention that
increases on inspiration (Kussmaul’s sign), a fall in systolic pressure of more than 10 mm Hg at
the end of inspiration (pulsus paradoxus), hypotension, muffled heart sounds, friction rub,
decreased apical impulse or tachycardia.
• Chest radiograph reveals cardiomegaly or a “water bottle” cardiac silhouette. Electrocardiogram
may show low voltage or electrical alternans. Echocardiogram is the most helpful diagnostic
exam.
Management
• Pericardiocentesis provides relief. Fluid analysis of pericardial fluids may be done (refer to
analysis of effusions in the section on pleural effusion below).Malignant pericardial fluids are
usually hemorrhagic or exudative. A negative result of fluid cytology does not completely rule
out effusion due to malignancy. Treat pericarditis if needed.
• Pericardial windows or drainage, and sclerosis may prevent recurrence. Radiotherapy may be
used for radiosensitive tumors. Pericardiectomy or pericardiotomy may be used when more
conservative measures have failed.
• If patient is close to death, treatment focuses on symptom control with analgesics, anxiolytics,
and oxygen.
Pleural Effusion
• Pleural effusion can be a transudate (low in protein) or an exudate (high in protein).
--- Causes of transudates include: congestive heart failure, cirrhosis, nephrotic syndrome,
hypoalbuminemia, constrictive pericarditis, cancer, and atelectasis.
--- Causes of exudates include: infection, cancer, and different immunologic and inflammatory
causes. Chylous effusions are high in triglycerides, and low in cholesterol.
• Malignant pleural effusion may be caused by direct involvement of the pleura, lymphatic
obstruction, venous obstruction, or a combination of factors. Effusion is usually exudative, but
can sometimes be transudative. In general, patients have a mean survival of 3 months.
Common conditions that occur in patients with advanced cancer, e.g. pneumonia, severe
hypoalbuminemia, and atelectasis, may also cause pleural effusion.
• Symptoms may include dyspnea, pleuritic chest pain (pleural inflammation), dull continuous
chest pain (pleural metastases), cough, and fatigue. Physical exam may reveal decreased
breath sounds, and dullness to percussion.
• Chest xray: For adults, upright PA can detect as little as 200ml effusion- as blunting of the
costophrenic angles); while lateral decubitus can detects as little as 100 ml fluid. CT scan or
ultrasound may be necessary to further localize the effusion, determine if the is fluid loculation,
and in aspirating and sampling pockets of effusion.
• Thoracentesis can be diagnostic and/or therapeutic.
Thoracentesis
• Use an Abbocath Gauge 16-18 (adult)/ Gauge 18-20 (child), 50 ml syringe, and a 3 way
stopcock; 5 specimen containers, and a 1+ liter sterile bottle. Use imaging studies as guide.
Usual site is the 8 th intercoastal space, posterior axillary line; or the 1st or 2nd intercostal
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space below the fluid level in the posterior axillary line- but not lower than the 8th intercostal
space. Prepare the skin with povidone iodine, and drape the area. Inject 5-10 ml anesthetic (eg
lidocaine or bupivacaine) at the superior rib margin; infiltrate through the pleura (sensation of
“pop”); aspirate to confirm the presence of fluid; and note the depth of the needle. Wait 5-10
minutes to allow the anesthetic to take effect. Prepare the drainage equiptment: clam the
proximal end of tubing, insert the distal end into a vaccum container. Using the Abbocath
attached to a syringe, enter the pleural cavity using the previous puncture site and depth.
Continue aspirating while advancing the needle. As the pleural space is entered, a “pop” of a
“give” will again be felt. Remove the needle, from the catheter, and continue to aspirate. Max
fluid drainage: 1-1.5 li in 24 hrs. Monitor for signs of respiratory distress; if distress occurs,
obtain a chest xray to check for pneumothorax. Apply petrolatum occlusive dressing to the area
of catheter removal. Obtain a CXR after the procedure. Obtain serum LDH, TPAG, and glucose.
Fluid is assayed for: Gram Stain, Culture and Sensitivity, and AFB (bottle 1); cell count,
differential count, total protein and LDH (bottle 2 with EDTA); and Cytology and Cell block
(bottle 3 with > 150-200 ml to increase the yield). Other tests include specific gravity, pH,
glucose, cell count, staining and cultures for bacteria, mycobacteria, and fungi. Effusions that
appear chylous can be tested for triglyceride and cholesterol. Cytology is positive in only 50% of
malignant effusions.
Exudates vs Transudates
Exudates are characterized by: total protein >3g/dL or effusion to serum protein ratio >0.5,
specific gravity >1, effusion to serum LDH ratio >0.6, and WBC >2500/uL.
• Pleural effusion will recur in most patients in 1-30 days.
• Chemotherapy may be used for chemosensitive tumors, e.g. breast and ovarian cancer,
lymphoma. Radiotherapy may help in effusions due to mediastinal lymphadenopathy.
• Pleurodesis, using a sclerosing agent such as talc, doxycycline, or anti neoplastic agents,
prevents recurrence.
• Pleurodesis can be considered if: the effusion reaccumulates quickly (1-3 days) and repeatedly
(requiring >3 thoracentesis aspirations) despite adequate dose of diuretics; patient’s symptoms
are relieved by previous aspirations; life expectancy > 1 month; and the effusion is not loculated
but is freely flowing.
• Complications of pleurodesis include pneumothorax, cough, chest pain, fever, empyema and
fluid loculation.
• Pleurectomy may be used when more conservative measures have failed.
Seizure
• Occur often in patients with cerebral tumors or meningeal involvement. Also occur in patients
with metabolic disturbances, infection, drug toxicity, drug withdrawal, stroke, intracerebral
hemorrhages.
Management of acute seizure
• Keep everyone calm. Prevent and manage problems that pose an immediate risk: aspiration,
head injury, status epilepticus.
• Assess and manage the airway. Provide oxygen. Assess the level of consciousness, signs of
trauma, time-including onset and duration. An IV access is usually indicated. May consider
CBC, glucose, lytes; cultures (blood, urine, CSF) if indicated.
• Diazepam (A: 5-10 mg IV, C: 0.1-0.3 mg/kg, if already IV access, or PR using the parenteral
solution; if seizure persists in 10-15 minutes, repeat the dose)
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• Lorazepam (A: 2 mg, C: 0.05-0.1 mg/kg, max 4 mg, IV/SL/SC; if seizure persists in 10-15
minutes, repeat the dose)
• Midazolam (A: 0.5-0.2 mg/dose IV/IM, C: 0.05-0.1 mg/kg/dose IV/IM/SC, or 0.5 mg/kg
PO/PR/IN, if seizure persists in 10-15 minutes, repeat the dose. Alternative PO route: 0.5-
0.75/kg/dose, max 20 mg, dilute in acetaminophen elixir, sorbitol, or flavored juice drink.
Parenteral Midazolam is 3-4 times the potency of diazepam, with negative inotropic,
vasodilatory, and respiratory depressant effects. Use lowest effective dose and monitor closely.)
• Fosphenytoin (or Phenobarbital) 15-20 mgPE/kg IV; if seizure persists in 15-20 minutes, give 10
mgPE/kg, then 4-6 mgPE/kg/day by IV/SC infusion. (PE =phenytoin equivalents)
Continuing prophylaxis for patients unable to swallow
• Phenobarbital A: 1-3 mg/kg/day, C: 1-5 yrs=6-8 mg/kg/day, 5-12 yrs=4-6 mg/kg/day, >12 yrs=1-
3 mg/kg/day, IV/SC, infusion, or IV/SC/IM in 1-3 divided doses. Very sedating. Titrate dose as
needed.
• Clonazepam A: 0.05-0.2 mg/kg/day, C: 0.01-0.05 mg/kg/day, PO in 2-3 divided doses, or by
continuous IV/SC infusion if available, titrate gradually
• Phenytoin Loading dose of 15-20 mg/kg up to 1 g IV in single or divided doses, then 5-6
mg/kg/day in 2 doses IV.
• Midazolam A: 0.5-2 mg/dose C: 0.03-0.05 mg/kg/dose, IV/IM/SC over 3-5 minutes. May repeat
every 2-4 minutes to effect, max total dose=5 mg, then intermittently q 1-4 as needed.
Spinal Cord Compression and Cauda Equina Compression

• Occurs in about 5% of patients with cancer. Distribution: cervical spine 10%, thoracic spine
70%, lumbosacral spine 20%; about 10-40% are multifocal.
• Early diagnosis and treatment are important if function is to be preserved. The most important
determinant of neurological outcome is the degree of impairment when treatment is started.
Needs a high index of suspicion. Delay in treatment may result in paralysis and bowel and
bladder incontinence.
• Initially manifests as localized pain that can last from weeks to months, followed by radicular
(nerve root) symptoms (pain in a dermatomal distribution, or sensory and motor loss in the
distribution of the involved roots). This is followed by a more rapid progression of symptoms due
to the compression of the spinal cord or cauda equine (weakness, gait problems, incontinence).
Complete myeolpathy may develop within hours.
• Prognosis or chance of recovering neurologic function
The neurological deficit at the time of therapy is the most important factor determining prognosis
for neurologic recovery.
Good prognosis (>50% chance): no weakness or incontinence, very slow progression or
symptom/s, still ambulatory; myeloma, lymphoma
Intermediate prognosis (15-30% chance): early weakness or incontinence, paresis, lesions
above T5; breast or prostate cancer
Poor prognosis (5-15% chance): progression of early weakness or incontinence; lung or renal
cancer
Very poor prognosis (0-5% chance): developed incontinence of sphincters, rapid deterioration
of neurologic function (<72 hrs); paraplegia (almost no chance of recovery)
• Localized pain: central back pain, aggravated by movement, coughing, or straining(‘it starts in
my back and comes round the side’, ‘it’s worse when I lie down or cough’)
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• Radiculopathy: nerve root irritation at the site of vertebral involvement; progressive weakness
and sensory loss(‘my legs won’t carry me up the stairs’, ‘I find it difficult to stand up’, ‘my legs
feel funny’).
• Myelopathy: urinary retention, loss of bowel control, motor weakness, reduced reflexes, look
for upgoing plantars, reduced rectal tone; prognosis worsens as myelopathy develops.
• Cauda equina: flaccid weakness, ‘sciatica pain’ both legs, urinary hesitancy/retention.
Causes
• Commonly due to lung cancer, breast cancer, prostate cancer, unknown primary,
lymphoma,and myeloma. Other causes include structural causes: epidural hematoma, epidural
abscess, herniated disk, benign tumor (e.g. meningioma), vertebral fracture (due to
osteoporosis); non-structural causes: paraneoplastic syndrome, radiation myelopathy, Guillain-
Barre syndrome. Back pain, without neurological symptoms, and with normal MRI of the spine
may be due to benign musculoskeletal causes, or retroperitoneal metastases.
PossibleTests
• Plain radiographs are helpful. Look for destruction of vertebral body, loss of pedicales, and
vertebral collapse. MRI is the imaging study of choice.
Management
• Usually requires urgent admission
• Immediate evaluation to confirm diagnosis (with computed tomography- spiral CT or CT
myelography, or magnetic resonance imaging scan) and initiate urgent therapy (radiotherapy,
occasionally surgery) if appropriate.
• Opioid analgesics
Almost all patients with spinal cord compression have severe pain that requires opioid
analgesics. Titrate the opioid dose to achieve pain relief as soon as possible. Severe nerve
involvement may require high doses of opioids. Adjuntive drugs for neuropathic pain may help.
Chronic opioid therapy may be needed for chronic pain even after definitive treatment of SCC.
• Dexamethasone
--- For mild radiculopathy give a loading dose of A: 12-16 mg C: 0.3-0.3 mg/kg, followed by A:
6-10 mg C: 0.04-0.08 mg/kg PO/IV/IM/SC qid. It alleviates neurological symptoms and helps
relieve pain.Give as soon as diagnosis made or strongly suspected.
--- Give higher doses PO/IV/IM/SC of A: 80-100 mg C: 1.5-2 mg/kg loading dose, followed by
A: 20-24 mg C: 0.5 mg/kg qid, for rapidly evolving disease, or if there is evidence of
myelopathy.
--- Wean steroids (reduce the dose by 25% every 3-4 days) after definitive therapy controls the
cord compression, or if deficits have already become irreversible.
• Radiotherapy
Radiotherapy controls tumor growth and relieves pain, and is the primary treatment. Its is
helpful especially for radiosensitive tumors (e.g. myeloma, lymphoma), early progressive
lesions, and lesions below the conus medularis.
Surgery
Surgery usually involves decompression by a laminectomy (posterior approach), or resection of
the tumor and vertebral body with prosthetic stabilization (anterior approach). Surgery may be
followed by radiotherapy. Surgery is particularly helpful if there is progressive worsening
condition during radiotherapy, radioresistant and chemoresistant tumor, spinal instability, and
previous irradiation in the same area. Laminectomy and fixation can also be used for cord
compression due to osteoporosis and vertebral collapse.
Chemotherapy
Chemotherapy is useful for chemosensitive tumors, e.g. lymphoma, leukemia, neuroblastoma.
Even if the patient has a limited life expectancy, it is still appropriate to offer interventions such
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as radiotherapy, chemotherapy, or even surgery, especially if the loss of function and other
complications of spinal cord compression will severely worsen the quality of life.
Steps in the Management of Back Pain in a Cancer Patient

• History and physical/neurological examination: look for clinical evidence of spinal cord
compression or cauda equine compression (SCCEC)/ radiculopathy/ mild stable signs of spinal
cord or cauda equina dysfunction
• If there is evidence of SCCEC and signs/symptoms are new-onset or progressing: consider
admission/ high dose dexamethasone/ plain Xray of the spine/ and emergency imaging of the
epidural space (as sson as possible).
• If there is radiculopathy or stable and mild signs of SCCEC: consider admission/ plain Xray of
the spine/ low dose dexamethasone/ and routine imaging of the epidural space (within 48
hours).
• If there is back pain without radiculopathy or signs or symptoms of SCCEC: consider plain Xray
of the spine. Continue to closely monitor the patient clinically.
-- If the Xray shows vertebral compression/ missing pedicle/ or suspicious lesions, or if the
patient develops suspicious signs and symptoms of SCCEC, then consider admission/
dexamethasone/ and imaging of the epidural space.
-- If the Xray does not show vertebral compression/ missing pedicle/ or suspicious lesions,
then proceed with a bone scan. If the bone scan shows suspicious lesions then obtain a CT
scan. If the CT scan shows suspicious lesions alongside the epidural space or if the patient
develops suspicious signs and symptoms of SCCEC, then consider admission/
dexamethasone/ and imaging of the epidural space.
• Definitive imaging the epidural space include: MRI, spiral CT, CT myelography, and
myelography. Imaging of the epidural space is needed for determining the degree of epidural
compression and the appropriate radiation portals.
• Determine the degree of compression seen in the epidural space:
For High Grade Compression: consider high dose dexamethasone and emergency radiotherapy
For Low Grade Compression: consider low dose dexamethasone and routine radiotherapy
If there is No Compression: continue back pain management and monitor closely clinically
Stroke
• Stroke can present as an acute motor and/or sensory deficit, mental status impairment, or
speech impairment.
• Causes include: primary or metastatic tumor, CNS infection, hemorrhage, embolism, or
thrombosis. Strokes can also be due to disease related coagulation disorders, DIC, or to
chemotherapy. Radiotherapy can cause vascular damage and may increase the risk of stroke.
Possible Tests
• CT or MRI with and without contrast. CBC, coagulation and bleeding parameters. Other
possible tests include: DIC screen, d-dimer, antithrombin III, protein C and protein S. Lumbar
puncture can be done after a CNS mass lesion is ruled out and coagulation problems corrected.
Management
• Stabilize the patient. Institute appropriate supportive care interventions. Steroids (eg
dexamethasone) to reduce cerebral edema; and to gether with mannitol for possible increased
ICP may be needed. Treat any underlying bleeding and thrombotic problems (eg ffp and
platelets for DIC).
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Superior Vena Cava Syndrome
and Superior Mediastinal Syndrome
• Superior vena cava syndrome (SVCS) results from the compression of the superior vena cava
(SVC). Superior mediastinal syndrome (SMS) occurs when the trachea is also compressed.
• Onset is typically slow onset (days/ weeks) but can be abrupt, and usually originates from tumor
in right, upper mediastinum.
• Causes include: cancer (85-95% of cases), typically from lung cancer, lymphomas, and
metastatic cancer to lungs; and benign causes (less than 15% of cases), such as mediastinal
fibrosis, vena cava thrombosis, and benign mediastinal tumors (e.g. aneurysm of the aorta or
subclavian artery, goiter, sarcoidosis, thymoma, teratoma, and dermoid tumor).
• Symptoms are of venous hypertension and include hoarseness due to vocal cord edema,
headache from cerebral edema, cough and dyspnea. Other symptoms may include: chest pain,
orthopnea, anxiety, confusion, somnolence, visual changes and syncope. Edema and airway
compression compromises respiration.
• Exam findings may reveal dilated collateral veins over chest wall, and distention of arm veins
that is unrelieved when arms are lifted, non pulsatile dilated neck veins, facial plethora and
cyanosis, facial and upper extremity edema of face, neck and arms (tight rings), pink eyes,
periorbitol edema.
• Initial symptom management with elevation of head and avoidance of venipunctures and IV
access in upper extremities.
• Chest radiograph shows the mass in >90% of cases (75% in the right superior mediastinum).
Other CXR findings may include: hilar lymphadenopathy and pleural effusion. CT can localize
the area of obstruction and the degree of occlusion. CT scan and digital angiography are helpful
if stenting is planned.
Management
• SVCS and SMS are not usually acutely life-threatening, unless other structures such as the
trachea, pericardium, or CNS are affected and compromised. When complications are life-
threatening, and the patient is unstable, empiric therapy may be needed prior to definitive
diagnosis. Emergent treatment may be needed for: airway compromise, decreased cardiac
output, and cerebral dysfunction. Consider intensive care unit monitoring if appropriate.
• Stenting using a percutaneously placed self expanding endoprosthesis, provides rapid relief,
and is the procedure of choice. It is also useful for recurrent SVC after radiotherapy.
• Anticoagulants are seldom effective for thrombosis, but are usually used with stenting.
• Radiotherapy is the most common emergent therapy, and is the treatment of choice if stenting
is not available. Complete response occurs in 75% of lymphoma, and 25% of lung cancer.
Recurrent SVC occurs in 20% of cases, but rarely for lymphoma.
Chemotherapy may be used in combination with radiotherapy, especially for small cell lung
cancer. Also used +/- radiotherapy for Non-Hodgkin’s lymphoma.
• Steroid Steroids may reduce edema and obstruction, particularly in patients with lymphoma,
and decrease brain edema. Eg Dexamethasone (A: 8-20 mg C: 0.25-0.5 mg/kg PO/IV/IM/SC
qday-qid). Monitor closely for tumor lysis syndrome. Steroids also cause histologic distortion
and make diagnosis more difficult- obtain samples for diagnosis prior to steroid use.
• Opioid for pain, dyspnea: eg Morphine A: 2-10mg IV/IM/SC, 5-30 mg PO, C: 0.1-0.2
mg/kg/dose IV/IM/SC, 0.2-0.5 mg/kg/dose PO, q4hours for dyspnea
• Elevate the Head; and Give Oxygen
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• Benzodiazepine for dyspnea, anxiety: eg Alprazolam 0.25-2mg bid-qid max 4 mg/day;
Diazepam A: 2-10 mg qd-qid. C: 0.1-0.3 mg/kg/day divided bid-qid, Midazolam A: 0.5-2 mg q2-4
hours. C: 0.03-0.05 mg/kg, max 5 mgq2-4 hours.
• Surgical decompression involves reconstructing or bypassing the SVC.
• Maintain adequate circulatory volume, but avoid overhydration.
• Minimize upper extremitiy venipunctures- high intravascular pressure may result in severe
bleeding.
• Tumor lysis syndrome precautions if indicated (eg lymphoma and leukemia).
Tumor Lysis Syndrome

• A metabolic syndrome produced by rapid tumor breakdown as a consequence of therapy. It is
characterized by hyperuricemia due to DNA breakdown, hyperkalemia because of cytosol
breakdown, hyperphosphatemia because of protein breakdown, and hypocalcemia secondary
to the hyperphosphatemia.
• These can result in acute renal failure secondary to uric acid, xanthines, and calcium phosphate
can all lead to nephropathy. Cardiac dysrhythmias can occur secondary to hyperkalemia and
hypocalcemia, cramps can occur secondary to hypocalcemia, and sudden death can result from
hyperkalemia or hypocalcemia.
• To prevent tumor lysis syndrome, identify, monitor, and institute prophylactic measures to
patients who are at high-risk of developing this condition. High lactate dehydrogenase (LDH),
pre-existing hyperuricemia or renal impairment increases the risk of significant tumor lysis
syndrome.
• Consider consulting the nephrology service so that they will be on standby for the possibility
that the patient might need hemodialysis.
• Prophylactic treatment is appropriate for patients with leukemia, lymphoma, or a large,
particularly anaplastic, solid tumor in whom tumor lysis syndrome may be present at the time of
diagnosis. Therapy is directed at maximizing excretion of released intracellular contents and
minimizing production of uric acid. Prophylactic treatment may begin hours or days before
initiation of chemotherapy and includes limitation of both potassium and phosphate intake.
Management
• Hydration
Hydration is very important. Hydration maximizes the renal excretion of potassium, phosphate,
and uric acid. Consider twice the normal maintenance requirement and may be increased up to
4 times the maintenance volume as necessary and as tolerated. Although oral hydration is
possible, intravenous (IV) therapy is more reliable and is preferred. A solution of dextrose 5% in
water (D5W) with one-fourth isotonic sodium chloride solution (40 mEq NaCl/L), sodium
bicarbonate, and no potassium is the appropriate initial IV fluid. Adjust sodium chloride and
sodium bicarbonate as necessary. Manage insufficient diuresis with mannitol or furosemide if
hypocalcemia is not severe.
• Alkalinization
Uric acid is less soluble in acidic environments; alkalization prevents precipitation of uric acid
crystals in the kidneys. Add sodium bicarbonate to IV fluids to maintain a urine pH level
between 7.0-8.0. Initially add sodium bicarbonate 40-60 mEq/L to IV hydration fluids; adjust as
necessary to maintain an appropriate urine pH level. Over-alkalinization precipitates calcium
phosphate and xanthine. Discontinue when the uric acid level is normalized.
• Reduction of uric acid level
Allopurinol inhibits xanthine oxidase and decreases uric acid production. Give 10 mg/kg/day or
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200-300 mg/m2/day PO/IV administered in 3-4 divided doses with a maximum dose of 800
mg/day. There is a risk of allopurinol-associated skin rash increase after 7-10 days of therapy.
Urate oxidase catalyzes the conversion of uric acid to the more soluble allantoin. Rasburicase is
a recombinant form of the enzyme urate oxidase. Give 0.15-0.2 mg/kg/day IV infused over 30
min for 5-7 days. Urate oxidase is rapidly active, highly effective, and safe. Increased use of this
agent may decrease the need for dialysis.
• Monitoring
The most rapid evaluation for symptomatic hyperkalemia is accomplished via bedside
electrocardiogram (ECG) and serial evaluation of T-wave morphology. Consider monitoring the
electrolytes, the uric acid, BUN and creatinine, as well as calcium, phosphorus, LDH, and
magnesium for at least the first five days. Consider metabolic and clinical monitoring at least
every 4-8 hours during the first 24 hours of therapy. Frequency of subsequent evaluations
should be adjusted as necessary during the first 2-5 days after diagnosis and initiation of
therapy. This is when you usually see significant tumor lysis. Include a coagulation profile and
accurate measurements of fluid intake, urine output, and body weight. Serial physical
examinations are important to assess changes in vital signs, evidence of edema, or signs of
electrolyte abnormality (eg, Chvostek or Trousseau sign).
• Hypocalcemia, hyperphosphatemia, hyperkalemia: (see section of electrolyte problems)
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Palliative Chemotherapy, Surgery, and
7 Radiation Therapy
General Guide for the Use of Palliative Interventions
• Palliative interventions must be part of a comprehensive palliative care plan.

• Decision for an intervention must be based on a thorough assessment of the patient and family.
• Decision must be based on current evidence and practice recommendations.
• The goal/s of the palliative care plan and the palliative intervention must be determined. (Does
the intervention improve the quality of life without prolonging survival? Prolong survival without
diminishing the quality of life? Improve both quality of life and survival?)
• Risk-benefit analysis should include all aspects of the patient and family’s quality of life.
• Risk-benefit analysis should include the prognosis and life expectancy of the patient. Short term
risks and benefits are more relevant in patients with a very limited life expectancy; some long
term risks and benefits may become relevant for patients with longer life expectancy.
• Decision should be consistent with the preferences of the patient.
• Decision should respect the patient’s right to make his/her own informed medical decision. The
decision may also involve the patient’s family to the extent that the patient wants.
• Palliative and curative interventions and goals are not mutually exclusive.
• Decision should consider resource and financial limitations of the patient, family, and institution.
Ideally, interventions must not consume more resources than necessary.
• Especially if prognosis is limited, delays in decision making and the start of the intervention
should be minimized.
• The choice and the possibility of using palliative chemotherapy, radiotherapy, or surgery also
depends on whether the cancer is sensitive to chemotherapy, radiotherapy, or amenable to
palliative surgery.
• The choice and the possibility of using palliative chemotherapy or radiotherapy also depends on
the patient’s previous response to any chemotherapeutic drugs or radiotherapy regimen that
he/she has already received in the past.
• The decision on when to start palliative chemotherapy, radiotherapy, or when do do palliative
surgery is based on many factors. If the goal is relieve or prevent cancer induced symptoms,
then the intervention should be considered when the patient experiences the symptom/s, or
when the patient is expected to experience the symptom/s soon. The possible benefit (eg
prevention or relief of symptoms or complications) should be weighed against the burden of the
intervention (eg side-effects, complications, hospital stay, costs).
• Highly chemosensitive, or highly radiosensitive cancers, chemotherapy or radiotherapy
respectively may be enough to provide complete or adequate symptom control.
• In oncological complications and urgencies- such as spinal cord compression, superior vena
cava syndrome, and airway obstruction- chemotherapy or radiotherapy alone may be all that is
needed for highly chemosensitive or radiosensitive tumors respectively.
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Palliative Chemotherapy
Oncologists generally use the term palliative chemotherapy when referring to chemotherapy with a
non-curative intent. Chemotherapy is used for symptom control, in selected cancers where
chemotherapy may improve quality of life and/or symptom control without impacting survival.
However, for many patients, symptoms correlate with tumor burden; chemotherapy that does not
effect tumor growth may not improve physical symptoms caused by the tumor. At times, quality of
life may be enhanced for some patients, even when there is no anti-tumor effect, probably due to
hope for a positive treatment effect.
Oftentimes, therapies previously thought to be of a curative nature are now being used in palliative
treatment regimes. Chemotherapy has been found to improve the quality of life in relieving pain,
dyspnea and other symptoms in tumor shrinkage or removal for palliation. It opens a bronchus, or
obstructed bowel, as well as stabilizes hypercalcemia or other metabolic problems, and relieves
pressure on vital organs. Corticosteroids are well-established coanalgesics. They alter vascular
permeability around a tumor, blocks synthesis of cytokines, and reduce tumor edema. Cytotoxic
drugs may also have a profound effect on granulocytes, lymphocytes, and monocytes. Populations
of these cells are located in and around a tumor and contribute to tumor bulk.
Common symptoms and problems related to chemotherapy include: nausea and vomiting,
diarrhea, constipation, fatigue, anorexia, oral problems (eg stomatitis), skin problems (eg
dermatitis, urticaria, photosensitivity), cardiac problems (eg cardiomyopathy, ischemia, myocarditis,
pericarditis, arrhythmia), neurological problems, bone marrow depression, and pulmonary
problems (eg pneumonitis, non-cardiogenic pulmonary edema). Some of these side effects can be
effectively managed with medications and some others may disappear with the discontinuance of
the therapy.
Chemotherapy is also used for oncologic urgencies such as spinal cord compression secondary to
lymphoma and germ cell tumors, and superior vena cava syndrome due to lung cancer.
Information needed from the consulting oncologist to help a patient decide on the value of
chemotherapy in advanced cancer
1. Response Rate. The oncologic definition of response rate is: (# of complete responders + # of
partial responders)/total # of treated patients. A partial response is >50% reduction in measurable
tumor; a complete response is complete eradication of measurable tumor; the reduction in tumor
must last for at least one-month to qualify as a response. Most clinical trials define progressive
tumor when there is >25% growth in measurable tumor.
Note: In some slow growing cancers, stable disease resulting from chemotherapy can be very
meaningful (<50% reduction, but < 25% growth).
Note: Response rate data quoted to patients comes from clinical trials using good performance
status, highly monitored patients; in general, the response rates for patients outside of clinical trials
can be expected to be lower.
2. Median Duration of Response. This number is vital for patients to make an informed decision.
Response ranges may be as short as 1-2 months for chemotherapy for pancreatic cancer to 9-12
months for 1st line breast cancer treatment.
3. Potential Treatment Burden. Acute and delayed toxicities, direct and indirect cost (lost work for
family members), need for clinic visits or inpatient stays, need for treatment monitoring (e.g. blood
tests, x-rays).
4. Duration of treatment. Standard practice is to wait for two full cycles of treatment before
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assessing response; however, if a patient is progressing during the first cycle, they will almost
always continue to progress through a second cycle.
Finally, patients always ask, "Will this treatment make me live longer?" In general, chemotherapy
responders (partial or complete) live longer than non-responders-the duration of improved survival
largely depends on the duration of response.
Relative Sensitivities of Advanced or Disseminated Cancers to Systemic Chemotherapy

(Wang and Kavanagh, 2006)
Highly Sensitive: Moderately Sensitive: Poorly Sensitive:
Consider Chemotherapy Likely to Benefit Less Likely to Benefit
Germ cell tumors Prostate cancer Esophageal cancer
-- testicle, choriocarcinoma Breast cancer Nonsmall cell lung cancer
Acute lymphocytic leukemia Small cell lung cancer Melanoma
Acute myelogenous leukemia Chronic myelogenous Renal cell cancer
Pediatric tumors leukemia Pancreatic cancer
-- Ewing sarcoma Ovarian cancer Hepatocellular cancer
-- Rhabdomyosarcoma Bladder cancer Osteosarcoma
-- Wilm’s tumor Endometrial cancer CNS cancer
Lymphomas Neuroendocrine cancer Retinoblastoma
-- Hodgkin lymphoma Kaposi sarcoma
-- Non-Hodgkin lymphoma Multiple myeloma
Neuroblastoma
Gastric cancer
Cervical cancer
Head and neck cancer
Colorectal cancer
Hepatoblastoma
Palliative Chemotherapy Guideline

• Choose the most appropriate agent based on the type of cancer, previous response to any
chemotherapy agents received in the past, treatment burden, and other factors.
• Use drugs which are easy to administer and use (oral formulations if possible).
• Try to use no more than 2-3 chemotherapeutic drugs- enough to achieve adequate response,
but with minimal toxicity.
• Begin with submaximal doses and titrate until: maximum dose is reached, symptom relief is
achieved, or significant toxicity or adverse effects occur.
• Try to use short palliative chemotherapy courses.
Adverse Chemotherapy Drug Reactions and Toxicity

• Adverse reactions of chemotherapeutic drugs are relatively more severe and more frequent
compared to non-chemotherapeutic drugs. Therefore, patients have to be monitored closely for
adverse reactions so that chemotherapy can be modified before the adverse reaction becomes
severe. Severe adverse reactions can cause significant distress, suffering and worsen quality of
life.
• Adverse reactions and toxicities usually depend on the following factors: specific agent, dose,
schedule of drug administration, route of administration, and patient specific predisposing
factors.
• Adverse reactions may be acute, chronic (cumulative toxicity).
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• Adverse reactions that are common to many chemotherapeutic agents include:
--- myelosuppression (leucopenia/ neutropenia, thrombocytopenia, anemia)
--- gastrointestinal problems (eg nausea, vomiting)
--- mucous membrane inflammation and ulceration
--- alopecia (hair loss)
• Chemotherapeutic agents that cause severe to moderately severe nausea and vomiting may
also require prophylactic antiemetics. Examples include: cisplatin, mechlorethamine,
dacarbazine, high-dose cytarabine, dactinomycin, carmustine, cyclophosphamide, ifosamide,
and carboplatin.
• There are several other toxicities which are associated with chemotherapeutic agents;
examples include:
Antitumor Antibiotics
--- anthracyclines (doxorubicin, daunorubicin, idarubicin, epirubicin, motixantrone):
cardiomyopathy (acute or chronic)
--- bleomycin: pulmonary toxicity/ fibrosis, linear hyperpigmentation, fever, hypersensitivity
--- dactinomycin: hepatotoxicity
--- mitomycin: hepatic dysfunction, renal dysfunction, hemolytic-uremic like syndrome,
anorexia, phlebitis
Antimetabolites
--- methotrexate: nephrotoxicity, pulmonary toxicity, hepatotoxicity
--- mercaptopurine: hepatotoxicity (cholestasis, liver necrosis, etc)
--- cytarabine: neurotoxicity (acute cerebellar syndrome), conjunctivitis, syndrome of high
fever, malaise, myalgia, joint and bone pain, rash, conjunctivitis, chest pain
--- fluorouracil: neurotoxicity (cerebellar ataxia, somnolence, headache), ocular toxicity
(conjunctivitis), dermatitis, phlebitis
--- fludarabine, cladribine, pentostatine: decreased cellular immunity, hepatotoxicity
Plant Alkaloids
--- vinca alkaloids (vincristine, vinblastine): neurotoxicity
--- etoposide, tenoposide: hypotension, hypersensitivity, phlebitis, peripheral neuropathy,
hepatotoxicity
--- paclitaxel, docetaxel: neurotoxicity (‘glove-stocking’, seizure), hypersensitivity, cardiac
arrhythmia, phlebitis
Alkylating Agents- Nitrogen Mustards
--- cyclophosphamide, ifosamide: nephrotoxicity, hemorrhagic cystitis, cardiotoxicity,
hepatotoxicity, neurotoxicity
Alkylating Agents- Nitrosureas
--- carmustine, lomustine: nephrotoxicity (renal atrophy), pulmonary toxicity (fibrosis),
hypotension, tachycardia, flushing, confusion
Alkylating Agents- Platinum Compounds
--- cisplatin, carboplatin: nephrotoxicity, neurotoxicity, ototoxicity, hypersensitivity
Other Alkylating Agents
--- asparaginase: hypersensitivity, pancreatitis, hepatotoxicity, encephalopathy, coagulopathy
--- monoclonal antibodies (eg rituximab): hypersensitivity reaction
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Palliative Surgery
Palliative surgery should be carefully considered on an individual basis and may be used to relieve
symptoms and improve quality of life.
Some Palliative Surgical Interventions
Resection
To control primary or metastatic soft tissue tumor problems such as pain, bleeding, ulceration,
draining fistula, malodorous smell, and discharge; as well as nodal metastases causing severe
lymphedema and limited function. In some very select patients, radical palliative resections (e.g.
esophagectomy, pelvic exenteration, and pancreaticoduodenectomy) may improve the quality of
life. Debulking or incomplete resection may be adequate to control symptoms, especially if the
tumor is slow growing (e.g. thyroid cancer), or responsive to adjuvant radio/chemo therapy.
Amputation may be needed for extremity tumors, to control symptoms such as pain, bleeding, and
fungation.
Relief of obstruction
By resection, bypass, percutaneous drainage procedures, ablative procedure, dilatation, or stent
placement. Extrinsic or intrinsic tumors may cause gastrointestinal, biliary, urologic, vascular,
lymphatic, or respiratory obstruction, that is partial or complete, and acute, sub-acute, or chronic.
Early recognition and intervention may prevent symptom crises, and even prolong symptom free
survival. Obstruction can cause significant discomfort that is difficult to palliate without relieving the
obstruction.
GI obstructions may cause pain, cramping, constipation, nausea and vomitting. Surgical resection
of the obstructing tumor should be considered if its possible. If resection is not possible, then
enterostomies of the small or large intestine can bypass areas of obstruction; if an enterostomy is
not possible, then a diverting ostomy may be done proximal to the obstruction. At least 100 cm of
small bowel is needed for adequate enteral nutrition in adults. High fluid outputs may cause
problems in proximal stomas. Percutaneous gastrostomy tubes relieve obstructive symptoms and
avoid the discomfort of long-term nasogastric tubes.
Biliary obstructions can be managed by percutaneous biliary drainage +/- stent placement, surgical
bypass, or an endoscopic stent placement.
Percutaneous nephrostomy tubes relieve ureteric obstruction and improve renal function. Possible
indications include bilateral hydronephrosis, unilateral hydronephrosis that worsens underlying
renal insufficiency, or pyelonephritis due to obstruction.
Tumor ablation can be done in accessible areas using laser, electrocautery, photodynamic therapy,
or cryotherapy. Stent placement and/or intraluminal radiation can slow tumor regrowth and re-
obstruction, and prolong the time between ablative treatments. Stents, placed endoscopically or
with radiologic guidance, are common pallative interventions, especially for relatively short and
fixed obstructions involving the bronchus, duodenum, esophagus, biliary tree, and the GI tract.
Endoscopic dilatation, usually every 3-4 weeks may help esophageal obstructions.
Drainage of effusions
To control symptoms due to ascites, pleural and pericardial effusions that do not adequately
respond to medical management (such as diuretics, sodium and fluid restriction).
For malignant ascites, paracentesis may be used to drain up to 5 liters in adults, and up to 1-3
times per week. Peritoneovenous shunts are seldom used due to high rates of complications (e.g.
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obstruction, infection), and mortality. Permanent indwelling peritoneal catheters have been used,
especially for home bound patients and those with very limited life expectancy.
Symptoms due to malignant pleural effusions are relieved by thoracentesis. To prevent fluid
reaccumulation, one can place a drainage catheter, followed by pleurodesis using a sclerosing
agent instilled at the bedside once chest tube drainage <100 ml per day. Recurrence of pleural
effusion after pleurodesis may still occur if there is: 1) inadequate lung expansion due to the tumor
or other causes, 2) insufficient contact between pleural surfaces due to adhesions, scarring, and
other causes, 3) ineffective sclerosis agent, and 4) inadequate initial drainage of the effusion.
Symptomatic pericardial effusion (causing dyspnea, cough, chest pain, palpitation, weakness, and
dizziness) may respond to pericardiocentesis. Up to 90% of malignant pericadial effusions may
recur in 3 months. Options to control; recurrence include percutaneous drainage catheter
placement, sclerosis, and the surgical creation of a pericardial window.
Surgical management of bony lesions and metastases

To manage impending fractures, pathologic fractures, spinal instability, and spinal cord
compression.
Mirel’s scoring system to determine fracture risk
1. Site: upper extremity=1; lower extremity=2; peritrochanteric=3
2. Nature of lesion: blastic=1; mixed blastic and lytic=2; lytic=3
3. Size / proportion of bone width with tumor: <1/3=1; 1/3 to 2/3=2; >2/3=3
4. Pain: mild=1; moderate=2; functional limitation=3
Total Score: >=9 (impending fracture – prophylactic stabilization); 8 (borderline – consider
stbilization); =<7 (not an impending fracture – nonoperative care)
Compared to traumatic fractures, pathologic fractures are less likely to heal adequately. Surgical
methods that provide permanent support, rather than depend on bone healing, may be needed to
decrease the likelihood of treatment failures and complications.
Spinal instability due to vertebral metastases may cause severe pain that significantly limits
movement and function. Vertebral collapse may occur due to bone destruction, even without
vertebral fracture. Surgical stabilization of the spine may relieve pain.
Spinal cord or cauda equina compression usually manifests as localized pain at the site of disease,
followed by motor and sensory deficits. Urgent evaluation and imaging study (MRI, CT/CT-
myelogram), followed by urgent treatment may be needed in order to preserve lower extremity and
sphincter function. Treatment usually includes steroids and radiotherapy. Surgical decompression
followed by spinal stabilization may be more effective than radiotherapy in some cases.
Neurosurgical interventions
Include peripheral neurectomy, hypophysectomy, and cordotomy. Once the tumor has infiltrated
the nerve roots, it is difficult to surgically relieve pain. This complication should be anticipated.
Controlling cancer before it infiltrates nerve roots (e.g. around the brachial and sacral plexus) may
prevent the development of intractable pain in the future.
Neurosurgical interventions for pain relief are usually ablative (involves the destruction or division
of nerves), through chemical neurolysis, radiofrequency ablation, or open surgical techniques.
Neurectomy has been used for head and neck cancers (trigeminal and glossopharyngeal nerves),
and chest wall pain. Since a single nerve may contain motor and sensory fibers, neurectomy may
result in both motor and sensory disturbances. Neurolytic celiac plexus blockade can significantly
relieve pain due to pancreatic cancer.
Cordotomy involves the division of the spinothalamic tract in the anterolateral quadrant of the
spinal cord, and results in loss of temperature and pain perception in the contralateral side,
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segments below the division. It has been used to relieve localized, unilateral lower extremity, or
perineal pain due to nerve plexus tumor invasion.
Vascular access procedures

Include central vascular access for medications, parenteral nutrition, blood sampling for tests, and
transfusions.
Interventions to facilitate nutritional support

Including feeding tubes.
Other procedures (e.g. biopsy)
Basic Considerations During Evaluation for Possible Palliative Surgery

4 Key Considerations
1. Is it doable? Is the surgery technically feasible?
2. Is the patient a good surgical candidate? Is the patient fit enough, both physically and
emotionally, for surgery and recovery?
3. Are the risks worth the benefits? Is the patient likely to benefit from the surgery?
4. Are the patient and/or family agreeable to the planned surgery? Is there an informed consent?
Absolute Contraindications to Surgery
Initial evaluation showing that corrective surgery was not possible.
Patient or family/proxy refuses surgery.
Relative Contraindications to Surgery
Poor general performance status
Poor nutritional status (marked weight loss, cachexia, hypo-albuminemia)
Advanced age in association with cachexia
Previous radiotherapy of the abdomen or pelvis
Palliative Radiation Therapy
Palliative radiation therapy is radiation treatment given to improve quality of life by improving
function and/or diminishing symptoms, most commonly pain, bleeding or pressure on vital
structures. Over half of cancer patients may benefit from radiation therapy at some time in the
course of their disease, and about half of all radiation treatment is given with palliative intent.
Radiotherapy is treatment with ionizing radiation, such as X-rays and gamma rays. The use of
radiation on a living cell causes both direct and indirect damage to the reproductive material of the
cell, DNA. Damage occurs in both malignant and normal cells within the Radiation Field -the area
through which the radiation beam passes. Malignant cells are less efficient at repairing DNA
damage. The goal is to treat a radiation field that includes all of the tumor cells while excluding as
much normal tissue as possible.
Common Uses of Palliative Radiation Therapy

• Pain: pain due to bone primary or metastases; pain due to nerve tissue or soft tissue primary or
metastases
• Bleeding: vaginal bleeding due to gynecological cancer; rectal bleeding anal or colorectal
cancer; hemoptysis due to airway or lung cancer; hematuria due to urological cancer
• Tumor fungation and ulceration
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• Obstruction: cancer causing obstruction of airway (esp large airway), esophagus, GI tract,
superior vena cava, lymphatics (eg causing limb swelling), cerebrospinalfluid / meninges
(causing increased intracranial pressure, hydrocephalus).
• Tumor masses causing symptoms: brain metastases, skin lesions; cancer causing nerve palsies
• Oncologic emergencies: superior vena cava obstruction, spinal cord compression.
Emergent or Urgent Conditions that may Respond to Radiation Therapy

• Spinal Cord Compression; Superior Vena Cava Obstruction; Life threatening Mass Brain Lesion
• Life Threatening Bleeding; Life Threatening Airway Obstruction
• Nerve Compression with Motor Dysfunction; Ocular Compression with Vision Impairment
• Life threatening Kidney Failure due to Ureteric Obstruction or Kidney Infiltration
• Malignant Refractory Hypercalcemia in cancer where radiotherapy is of proven benefit
Radiation therapy can be delivered 1) from outside the body, External Beam Radiation (EBR); 2)
from within the body by placement of a radiation source near the cancer, Brachytherapy ; or 3) as a
radiopharmaceutical given by mouth or by intravenous injection (e.g. Strontium 89).
A Fraction is the number of individual treatments used to complete the treatment regimen.
Fractionation gives normal tissues an opportunity to recover while continually reducing the tumor
cell population. Compared to the standard course, hypofractionation uses higher radiation doses in
fewer fractions, and hyperfractionation uses smaller doses in more fractions. Radiation doses are
described in units called Gray (Gy) or centiGray (cGy): 1 Gy = 100 cGy. (Note: in the older
literature, the term Rad was used, 1 rad = 1 cGy). Different tissues have different radiation
tolerances; liver and kidney can only tolerate a small total radiation dose (< 2400 cGy), whereas
bone and peripheral nerves can tolerate much larger total doses (>5000 cGy). Prior to the first
treatment, patients undergo Simulation, where the exact location of the field is mapped. Most
palliative XRT lasts one to three weeks (treatment for curative intent lasts 5-7 weeks). Treatments
are delivered inside a shielded, enclosed room. Treatment takes a few minutes and is painless.
The radiation oncologist evaluates response and toxicity. Side effects can be early/acute, occurring
during or shortly after treatment and resolving within one to two months (e.g. oral mucositis during
oral radiation), or late, occurring months to years after treatment (e.g. coronary artery disease
following chest radiation). Early toxicity is related to inflammation and death of rapidly dividing cells
(e.g. skin, gut) while late effects result from vascular changes and cell death of slowly dividing
cells.
The most important decision when considering palliative XRT is to assess the balance between
anticipated functional/symptomatic benefit versus time spent receiving therapy and acute toxicities.
It is vital to review 1) the estimated prognosis, 2) current and anticipated best functional status
outcome, 3) expected toxicities and 4) treatment burden-time spent coming to XRT site, time off
work for family, cost, etc. Some practical considerations include: 1) A full curative dose is usually
not appropriate. Palliative goals can be achieved with smaller doses 2) Shorter treatment times are
more convenient and appropriate for patients and their families.
Bone Metastases -- Radiotherapy is the most effective treatment of local metastatic bone pain.
External beam therapy achieves pain relief in 30-80% of patients with radiologic reossification
occurring in 20-30% of lytic lesions. Common radiotherapy schedules include 30Gy x 10 fractions;
or a single large fraction (8Gy x 1), especially in patients with expected survival < 3 months, and
with an overall response rate of 60 % and a complete response rater of 30%. Reirradiation of
previously treated bone mets can be effective in 50% of cases. Surgical fixation prior to XRT is
indicated for large lesions, when >50% of the cortex is replaced by tumor, or when fracture has
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occurred in a weight-bearing bone. Prophylactic irradiation of all bone mets to prevent pain is not
recommended, but it can be considered if there is a risk of fracture (e.g. lytic lesions > 2.5 cm in
diameter involving the cortex). Radionuclide therapy (e.g. Strontium 89) is indicated for multiple
sites of painful bone metastases, usually breast or prostate cancer. Peak analgesic effect occurs 3-
6 weeks following treatment. Side effects are hematological with decreased blood counts in 10-
30% of patients. Worsening of pain, "pain flare", may occur following administration and prior to
pain relief. Radionuclide therapy can be combined with external beam radiation.
Epidural Metastases and Spinal Cord Compression -- Radiotherapy and decompressive

surgery are both effective in the initial management of spinal cord compression. External Beam
Radiation provides definitive treatment in conjunction with a short-course of steroids. The usual
schedule is 30Gy x 10 fractions x 2 weeks, 20Gy x 5 fractions x 1 week; and 8Gy x 2 fractions.
Results of treatment are related to the neurological status at the start of treatment. About 90% of
ambulatory patients at the start of treatment remain ambulatory; 50-55% patients with paresis /
weakness become ambulatory; and only 10% of patients with paraplegia regain mobility.
Indications for surgery include no tissue diagnosis, spinal instability, bone fragments causing cord
damage and progression during/after XRT.
Brain Metastases -- Radiotherapy is an effective intervention for cerebral metastases. It improves

symptoms and prevents progressive neurological deficits. Palliative radiation can relieve symptoms
and even prolong survival. Headache, motor and sensory loss, and confusion will respond to
treatment in approximately 80% of patients with a complete response rate of 35-55%. Usual
schedules are 30Gy x 10 fractions, 20Gy x 5 fractions; although shorter courses can be used (e.g.
12-17Gy x 2 fractions). Surgery is indicated for good prognosis patients with a solitary accessible
lesion or for refractory neurologic symptoms (e.g. seizures). Whole brain external beam radiation
(WBRT) is used if there are multiple areas of metastasis; and it can also decrease recurrence after
surgical resection or SRT. Stereotactic radiotherapy (SRT), also called radiosurgery or “gamma
knife”, uses multiple beams from different directions to concentrate RT dose to a limited area. SRT
is an alternative to surgical resection for single lesions, and can be considered for 2-3 lesions.
Standard regimens may include WBRT followed by SRT, or SRT alone and repeated as needed.
Patients can be risk stratified based on 3 criteria for good prognosis: age < 60, Karnofsky
performance score 80-100, and no cancer elsewhere. Strata I: patients with all 3 criteria are most
likely to benefit from RT; II: intermediate prognosis and response, and III: poor prognosis. If RT is
planned for II, and III, a shorter course of RT should be considered.
Head and Neck Malignancies – RT can be used in locally advanced head and neck malignancies
to control symptoms such as pain, dysphagia, hoarseness and dyspnea. As the cancer progresses
tracheostomy may be needed to maintain the airway, and a feeding tube may be needed for
nutritional support. Palliative RT courses vary; for example, 20 Gy x 5 fractions results in > 50%
symptom relief in 50-75% of patients.
Esophageal Malignancies – Common palliative RT options to relieve dyphagia in esophageal

cancer include: external beam irradiation, or intraluminal brachytherapy. Palliative RT courses vary;
for example, 30 Gy x 10 fractions, or 2 Gy in twice daily fractions for 2 weeks results in symptom
relief in 70% of patients. High dose brachytherapy x 1-3 fractions results in symptom relief in 50%
of patients.
Pelvic Malignancies – RT is used in advanced, inoperable, or recurrent pelvic malignancies

(including genitourinary, gynecologic and colorectal cancers), to control symptoms such as pain
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(eg due to adenopathy, bone metastases, and lumbosacral plexopathy), bleeding, mass effect,
lower extremity edema, fistula formation, bowel obstruction, kidney failure due to ureteral
obstruction and mucous discharge. Retreatment for symptom control may be needed especially for
patients with a longer life expectancy. Late complications of RT (e.g. severe diarrhea) may be
encountered after retreatments. Combination chemoradiotherapy can be used for retreatment.
Skin Malignancies – RT can be used for basal and squamous cell carcinoma, to control bleeding,
ulceration, and secondary infection. Melanomas are relatively radioresistant, but palliative RT can
be used for symptom control. Palliative RT courses vary; for example, 8 Gy on Day 0, 7 and 21, or
6 Gy x 4 to 5 fractions are helpful in 80% of patients.
Other Indications: The following are all appropriate for consideration of palliative radiation:
Obstruction: vascular (SVC syndrome), esophagus, airway, rectum, biliary tract Pain: adrenal
metastases-flank pain, nerve impingement Bleeding: stomach, esophagus, head/neck cancer,
bladder, cervix Ulceration/ fungation
Acute Side Effects of Radiotherapy

Acute side effects are common. They usually occur after treatment but are self-limited. Provide
proper education and counseling about the possibility of side effects, their self limited nature, and
management to avoid anxiety and stress.
• Fatigue: During and after treatment. See section on fatigue for management.
• Skin Erythema and skin breakdown: May use topical steroids for irritation and erythema if
skin surface is not open. For dryness and peeling (dry desquamation), may use mild
moisturizers. For skin breakdown, ulceration and weeping (wet desquamation), institute proper
skin care (similar to burn management) to avoid skin infections.
• Nausea and vomiting: Antiemetics given as prophylaxis or as acute therapy.
• Diarrhea: Low fiber diet. Antidiarrheals as needed.
• Dysuria and urinary frequency: Exclude urinary tract infection. Increase fluid intake. May
consider cranberry juice, pyridium, and anti-spasmodics as indicated.
• Mucositis: Painful inflammation commonly affecting mouth and pharynx. Good oral hygiene.
Treat any secondary infections, e.g. fungal / candida or bacterial infection. Soft food. Local /
topical anesthetic if needed.
• Dysphagia: May be due to pharyngitis and / or esophagitis. Soft diet, analgesics, anti-reflux
and / or acid suppression therapy.
• Alopecia: Provide counseling and support. Reassurance that hair will regrow.
Late Complications of Radiotherapy

Late complications (e.g. myelitis, lung fibrosis, renal failure) occur months to years after treatment.
These complications are usually chronic and progressive, rather than self-limiting; and localized,
rather than systemic. These include: myelopathy, bone necrosis, GI stenosis; pulmonary fibrosis;
skin ulceration, kidney dysfunction, kidney failure, mayocadial and pericardial injury and damage.
These are difficult to treat; and it is easier and better to prevent or decrease the risks of these
complications instead. They are less relevant if prognosis is limited to less than a few months.
However, they need to be considered in patients with longer life expectancy, e.g. breast cancer.
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8 Ethical and Legal Issues in Palliative Care
Ethical Principles in Palliative Medicine
Ethical principles that are relevant in palliatitve medicine include the four basic principles of modern
bioethics: autonomy, beneficence, justice, and non-maleficence. Other relevant ethical principles
include: the respect for human life and death, therapeutic proportionality, truthfulness and honesty
in communication, non-abandonment, and the principle of double effect. There is a great difference
of opinion as to how to balance these frequently conflicting principles. For example, one should
respect patient autonomy, but there are limits to autonomy, when it conflicts with beneficence
toward the patient and society.Professional integrity must prevail as these ethical principles are
weighed and applied to specific clinical situations.
Beneficence
Beneficence implies that we should do what is "good" for the person and/or the society. Action in
the best interests of a person is a manifestation of beneficence. Our attempts to achieve good,
however, are complicated by the diversity in how individuals, rank and weigh what are good and
harmful. In palliative care, the principle of beneficence implies positive acts such as treating pain
and other symptoms effectively, and providing relief and comfort for psychosocial arid spiritual
problems.
Autonomy
Autonomy implies that we should respect a person’s right to self-determination. It allows individuals
to have freedom and authority over decisions regarding their lives and treatment in accord with
their own particular values, consciences, and religious convictions. This includes the freedom to be
given all relevant information,and the freedom to choose among all ethical, legal and medically
available choices. It is the right to choose the "good" as one defines it. Patients with decision-
making capacity are free to reject, without coercion or fear of retribution, any form of medical
therapy, including life-prolonging or life-sustaining therapy. A patient’s right to refuse unwanted
treatment, including nutrition and hydration, is absolute. The principle of autonomy includes the
patient’s right not only to refuse a particular treatment, but also to ask that the treatment be
modified based on their needs and preferences (e.g. degree of sedation, degree of analgesia).
Nonmaleficence
Nonmaleficence implies that we should act to avoid harm, or minimize harm to the person and/or
society. In palliative care settings, examples of possible violations of the principle of non-
maleficence include: providing unnecessary but potentially harmful interventions, failing to stop
treatments when the burden begins to exceed the benefit, and even failing to give adequate doses
of medications to control pain and other distressing symptoms.
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Justice
Justice implies that we should be fair to all, and promote equity and equality of care. It may limit
personal autonomy when patients’ wishes conflict with the needs of society. Society cannot be
expected to fund futile treatment (i.e., treatment that offers no reasonable hope of benefit).
Respect for Human Life and Death

According to the WHO, palliative care should affirm life and regards dying as a normal process,
neither hastening nor postponing death. Respect for human life and death also implies that we
should respect a person’s right to live, as well as his/her right to die with dignity.
Therapeutic Proportionality
Therapeutic proportionality implies tha we should provide a person the treatment/s that are
proportional to the expected results. We are not obligated to provide interventions which are not
proportional to their expected results; these interventions are are called “disproportionate” (also
called “extraordinary”). Therapeutic proportionality judgements should be based on the person’s
medical situation, utility/futility of the intervention/s, risks/benefits of the different options, and the
prognosis. The “burden” of the intervention should be considered, which includes the physical,
emotional, spiritual, social, financial, and familial distress.
Truthfulness and Honesty in Communication

Truthfulness and honesty in communication implies that we should always be honest and tell the
truth when we communicate with our patient/s. At times, however, the family and/or the patient
himself/herself might request that he/she not be told about his/her medical condition. Physicians
should determine and respect the patient and the family’s preferences with regard to what is
communicated.
Non-abandonment
Non-abandonment implies that we should continue to provide care and comfort to the patient until
the very end of their life. This also includes assistance and care during the dying process, and the
continued care of the bereaved as long as it is needed.
Principle of Double Effect

The doctrine and principle of double effect was first advanced by St Thomas Aquinas to distinguish
interventions intended to relieve suffering from ones that intentionally hasten death. In clinical
situations in which a proposed intervention is known to have both negative and positive
consequences, physicians often use the principle of double effect to help justify their choice.
The principle of double effect emphasizes four conditions:
• the nature of the act must be good (i.e., relief of pain);
• the good effect and not the bad effect must be intended (i.e., respiratory depression after the
administration of opioids may be foreseen but not intended);
• the bad effect must not be the means to the good effect (i.e., death must not be the means to
the good effect); and
• the good effect must outweigh the bad effect.
The principle is often used to decide which end-of-life interventions that result in death are morally
and legally permissible and which interventions are not. The principle of double effect has had
great instrumental value in clinical practice and the law. It helps the physician provide appropriate
and adequate analgesia and sedation in terminally-ill patients by highlighting the moral distinction
between intended consequences and ones that were foreseeable but unintended.
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Virtue and Professional Integrity
Acting with professional integrity in palliative medicine is conduct consistent with a framework in
which ethically appropriate means are used to achieve the goals of palliative medicine. Words and
actions must be consistent with a core set of professional values and moral principles that are
essential to the practice of palliative medicine. Virtues that define the character of a good palliative
care physician include:
• Fidelity to trust and promise—honoring the ineradicable trust of the patient-physician relationship
• Effacement of self-interest—protecting the patient from exploitation and refraining from using the
patient as a means of advancing power, prestige, profit, or pleasure
• Compassion and caring—exhibiting concern, empathy, and consideration for the patient’s plight
• Intellectual honesty—knowing when to say, “I do not know”
• Prudence—deliberating and discerning alternatives in situations of uncertainty and stress.
Dignity
Dignity is a complex and multidimensional concept that is related to the person’s sense of self-
respect and self-worth. Preservation of dignity is a primary goal of palliative care. This goal has
expanded the scope of palliative medicine beyond the pain-control and symptom management
paradigm, to encompass all the dimesions of modern palliative care: physical, psychological,
social, spiritual, and existential. Palliative care physicians should promote dignity-enhancing
actions, and avoid dignity-eroding ones.
Confidentiality
Confidentiality implies that we should acknowledge that patient information is privileged, and we
should not disclose patient information without the patient's consent - or, for children, a parent's
consent. Confidentiality respects a patient’s right to privacy. However, sometimes it may be
appropriate to breach confidentiality. In general, patient confidentiality can be breached for three
broad reasons: avoiding harm to others, benefiting the patient, and public health reporting.
Informed Consent
In the past, medical decisions were almost entirely based on the opinions and preferences of the
physician. Nowadays, the authority for these decisions has moved from the physician to the
patient. The old approach is now commonly considered inappropriate “paternalism”. The modern
approach to informed consent has resulted from the modern trends in the law, bioethics, and
society. A series of legal cases further defined this concept used in medical decision making. In
bioethics, respect for patient autonomy has become a dominant ethical principle. These trends
reflect the emphasis of individual rights in modern society.
Elements of an Informed Consent

Elements of a valid, informed consent include: competency, disclosure, understanding, voluntary,
and decision.
Competency
Competency is “the ability to perform a task.” Law, psychiatry, and philosophy have competing
definitions that are not entirely consistent. It may be helpful to use the definitions based the laws of
the state, and then consider the concept of decision-making capacity.
Decision-Making Capacity
Decision-making capacity refers to a person’s ability to:
• understand and articulate relevant information and the implications of treatment choices
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• reflect on information in accordance with personal values; draw and articulate conclusions
• make a voluntary, uncoerced, reasoned choice, and
• communicate that choice.
A patient is presumed to have decision-making capacity unless proven otherwise.Decision-making
capacity is determined by the physician. It can be temporarily or permanently compromised by
conditions such as delirium, dementia, metabolic imbalances, severe pain, high doses of drugs to
control symptoms, advancing disease, and psychological factors including the patient’s denial of
serious illness. Patients who have decision-making capacity should be part of the process of
informed consent, regardless of whether they are legally competent (e.g., mature adolescents).
The physician should first assess the patient’s mental status and look for treatable conditions that
compromise the patrient’s decision-making capacity.
When a patient’s capacity fluctuates or is uncertain, there is usually less of a need to further clarify
the decision if the physician, the surrogate, and family members agree on treatment decisions.
When disagreements about treatment occur, wait, if possible, until the patient regains decision-
making capacity.
If a patient’s lack of decision-making capacity is likely to continue indefinitely, the designated
surrogate has the authority to make decisions based on the following guidelines:
• Follow the patient’s advance directive
• If no directive is available, apply the patient’s preferences and values.
• If the patient’s preferences and values are unknown, choose as a reasonable person would in
the patient’s circumstances.
Documentation in the patient’s medical record is critical. It should include a description of how and
with whom a decision of incapacity was reached.
Disclosure
Disclosure refers to the information that must be communicated by the physician to the patient
before consent. This information includes (a) the nature and purpose of the treatment, (b) the
foreseeable risks and discomforts, (c) the potential benefits, and (d) the available alternatives.
Three standards guide the selection of information that is presented: (a) the professional standard,
to provide the information that a reasonable physician would provide in similar situations; (b) the
reasonable-person standard, to provide all the information that is important to make the decision
(i.e., all the information that a reasonable decision maker would want to know); and (c) the
subjective standard, to provide all the information that is material not just for a reasonable person
but for this particular person (e.g., based on his knowledge of the patient- the patient's preferences,
fears, life story, family history, values, and others- the physician tailors the information to best meet
the patient's needs).
In modern practice, disclose common complications regardless of severity, and disclose risks that
are serious or irreversible regardless of frequency. Based on this, physicians usually mention the
possibility of death, even when the risk is minimal. This practice is prudent in the current legal
environment, but the subjective standard may further guide the physician: patients who present
themselves as “wanting to know everything” should be told about the risk of death, whereas those
who are looking for reassurance may be spared this disclosure unless it is truly a risk.
Understanding
There should be adequate understanding. Physicians should share information and options fairly.
Physicians should constantly assess how much patients and families understand the diagnostic
and treatment choices, especially those involving risk. People may choose differently, depending
on whether the risks are presented as chances of success or chances of failure. This can seriously
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affect decision making- eg a physician optimistically presents one option in terms of its chances of
success, while presenting the alternatives in terms of the chances of failure.
Voluntary
Decisions should be voluntary. Decisions may be influenced by persuasion, but not by coercion, or
manipulation. Physicians may use persuasion as an ethically appropriate approach in obtaining
informed consent. For example, if parents refuse chemotherapy for a highly curable cancer
because of their worries about the side effects, physicians should further advice the parents to
consider whether they have weighed the short-term side effects against the long-term chance of
survival- in this case failure to at least try to persuade parents would be inappropriate. Coercion
involves influencing decisions with the use of threats. Manipulation involves altering the process of
disclosure in a way that emphasizes or minimizes some of the information relevant to the decision.
Instead of fairly presenting all the facts, manipulation attempts to influence decisions by selectively
presenting the facts. Even if the physician’s intentions were good, an approach that uses
manipulation or coercion will fail to meet the standards of voluntary informed consent.
Decision
The goal of informed consent is to help the patient and/or family to make the most appropriate
decision/s. It is not just obtaining a signature on the bottom of a form. Patients and families are
faced with multiple decision points during the progression of the patient's clinical condition, and the
physician should ensure that informed decision/s and consent/s are done properly.
Informed Consent for Incompetent Adults

The law defines ways in which the rights of incompetent adults can be exercised by others. Two
standards guide surrogates who must make decisions for patients who cannot decide for
themselves. The Substituted-Judgment Standard seeks to make decisions on the basis of the
actual values and preferences the patient had before becoming incompetent. The goal of basing
decisions on the actual wishes of patients has given rise to efforts to have patients articulate these
wishes beforehand through the use of advance directives. Advance directives allow patients to
specify the extent to which they would like to have life-sustaining treatments if they develop specific
medical problems while incompetent. In the United States, the Patient Self-Determination Act
requires hospitals to ask whether patients currently have an advance directive and to create one if
they do not. The substituted-judgment standard cannot be applied to patients who have never been
competent. Instead, physicians may use the Best-Interests Standard, which requires surrogates to
make medical decisions that are most in accord with affected patients' best interests.
Informed Consent for Children

Children differ from incompetent adults. Their competency, autonomy, and decision-making
capacities are in a state of evolution- they have a potential to become competent adults. With
adults, strive to respect their former autonomy; with children, try to preserve the options faithfully
for their future autonomy.
Children Unable to Participate in Decision Making
From the newborn period through early childhood, children are not able to participate in medical
decision making. Parents generally are viewed as their surrogate decision makers. This is based
on the following ideas: (a) parents have strong emotional bonds to their children and are motivated
to make decisions that are in their best interests; (b) it is presumed that children will grow up to
have many of the same values as their parents; therefore, parental decisions are likely to resemble
the kinds of decisions that children will make when they become competent adults; (c) parents
usually will have to shoulder and live with the consequences of the decisions that are made on
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behalf of their children (e.g. financial obligations); and (d) parents are held responsible for most of
the nonmedical decisions that must be made on behalf of their children (housing, food, schooling,
etc.), and so, they should be responsible for the medical decisions as well.
Children Able to Assent to Medical Treatment
On the basis of knowledge of normal childhood development, the U.S. National Commission for the
Protection of Human Subjects of Biomedical and Behavioral Research in 1970 proposed that
children between the ages of 7 and 14 should be asked for their assent to medical treatment. After
the age of 14, most children generally may already have full decision-making capacity. The
American Academy of Pediatrics in 1995 stated that “doctrine of 'informed consent' has only limited
direct application in pediatrics. Only patients who have appropriate decisional capacity and legal
empowerment can give their informed consent to medical care. In all other situations, parents or
their surrogates provide informed permission for diagnosis and treatment of children with the
assent of the child whenever appropriate”.
Emancipated and Mature Minors
Emancipated minors fall into a legal category that gives individuals under the age of majority the
rights of adults to consent to medical care. Generally, minors are emancipated when they are
married, are parents, or are on active duty in the armed forces. In some countries, minors are
emancipated when they are beyond a certain age (e.g., 18 years), are not financially supported by
their parents, and either are not subject to parental control or their emancipation has their parents'
consent. There are statutory or case laws for the treatment of mature minors. Mature minors are
not emancipated, but they may have the legal power to consent to some forms of medical
treatment. This concept may provide legal protection to physicians who treat adolescents.
Ethical Dilemmas about Informed Consent in Pediatric Patients

Parents Do Not Want Their Child to Know the Diagnosis
Several decades ago, adult patients with cancer usually were not told of their diagnosis. Similarly,
early medical literature also supported the view that it was unethical to inform children with cancer
of their diagnosis, because they need to be protected from the psychological harm of knowing that
they have a life-threatening or terminal illness. Since then changes in medical practice had led to a
reversal of this view, with recommendations for full disclosure to adults and age-appropriate
disclosure to children. In addition, early disclosure may be psychologically beneficial for children.
Patients who learn of their diagnosis early may have a better psychosocial adjustment than those
learning late. Children who learn of their diagnosis late may have adjustment or other psychosocial
problems, greater difficulty in integrating the information, and may sometimes feel betrayed.
Child Refuses Necessary Diagnostic or Therapeutic Procedures
Just as older children and adolescents may have the capacity to participate in decision making,
they also have the capacity for irrational behavior. In particular, adolescents do not yet have the
rights of adults to refuse medical therapy, but parents no longer have authority to mandate their
treatment. The best recommendation that can be made is for the specialist to try to persuade
adolescents regarding the optimal approach to their care. When these recommendations are
refused, the physician must decide whether this decision is reasonable, or whether it is in the
patient's best interest for the physician to seek a court order imposing the institution of standard
therapy. When in doubt, the bias should be toward potentially life-prolonging treatment, because
this is the most likely to preserve options for adolescents as they mature into autonomous adults.
Parents Refuse Necessary Diagnostic or Therapeutic Procedures
Western approaches to medicine no longer have unchallenged dominance. Different cultures may
not approach health care with the same principles and assumptions as those of modern medicine.
Also, the alternative medicine movement is a rapidly growing combination of approaches that may
be adopted by patients and families either exclusively or in combination with medical treatments.
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The physician should determine how much of these views can be attributed to differences between
cultures and beliefs; and how much can be attributed to irrational opinion. Some physicians may
have a tendency to override the decisions of parents when they refuse standard therapy based on
religious or cultural reasons. Physicians should always try to maintain a good working relationship
with the family. This may mean making concessions to family requests that are not consistent with
optimal medical management but do not place the child in any serious danger. This may be
necessary to maintain a family's cooperation with the administration of medications, the keeping of
outpatient appointments, and others. Another alternative will be to place the child in foster care for
the duration of the treatment- after weighing the benefit vs the disruption of the family and the
psychological trauma that this will cause.
“Baby Doe” Regulations
A controversial area of decision making about life-sustaining treatments in pediatric patients
concerns the so-called Baby Doe regulations. Born in 1982, Baby Doe was an infant with Down
syndrome and tracheoesophageal fistula. His parents declined corrective surgery on the grounds
that he would never achieve a “minimally acceptable quality of life,” and the child subsequently
died. The case generated public controversy. After a number of appeals, the final Baby Doe
regulation, the Final Rule, was passed by U.S. Congress in 1984. It stipulated that “the withholding
of medically indicated treatment from a disabled infant with a life-threatening condition” by parents
or providers was considered medical neglect. It further outlined three medical conditions that would
justify withholding of otherwise required treatment: (i) The infant is chronically and irreversibly
comatose; (ii) The provision of such treatment would merely prolong dying, not be effective in
ameliorating or correcting all of the infant’s life-threatening conditions, or otherwise be futile in terms
of the survival of the infant; or (iii) The provision of such treatment would be virtually futile in terms
of the survival of the infant and the treatment itself under such circumstances would be inhumane.
Advance Directives
Instructive Directives
An instructive directive is written by a person with decision-making capacity and becomes effective
when the person’s capacity to make healthcare decisions is compromised. Examples of instructive
directives include living wills, and medical directives.
An instructive advance directive is not synonymous with a physician’s order. Physicians should
honor the intent of a patient’s advance directive and, after consultation with the patient/surrogate
and family, write appropriate orders (e.g., an order not to resuscitate or to withdraw artificial
nutrition when it no longer serves the patient’s best interests).
Proxy Directives
Proxy directives authorize a specific person to make healthcare decisions on behalf of a patient, in
the event the patient loses decision-making capacity. Common examples include the durable
power of attorney for healthcare and designation of a healthcare surrogate. In the absence of a
proxy directive, most states designate the patient’s spouse, then adult children, then parents or
siblings to act as the patient’s surrogate. Neither the patient’s physician nor members of the
palliative care team should serve as the patient’s surrogate.
A proxy is invaluable in the following circumstances:
• A patient wants someone other than a spouse to act as the proxy (e.g., a specific family
member, a lover).
• Disagreements among family members cannot be resolved.
• Family members are unavailable or nonexistent.
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Do Not Resuscitate Orders
Do Not Resuscitate (DNR) is a designation requested by the patient or the patient’s proxy. As a
designation, it is a declaration to forgo cardiopulmonary resuscitation (CPR) in the event of a
cardiopulmonary arrest. Thus, except during an actual cardiopulmonary arrest, a DNR order
provides no directive on diagnostic and treatment issues experienced before an actual
cardiopulmonary arrest. The reasons for a DNR order are varied and may not be related to any
terminal illness. Some patients may request it on a philosophical or religious basis, feeling that “if
the time has come, it is time to go naturally.” They may be in excellent health but request DNR with
the understanding that a DNR order has no implication for lessening other diagnostic or therapeutic
interventions. The DNR order is often wrongly extrapolated and inferred as a less aggressive care
plan. The degree of diagnostic workup and treatment desired by the patient (or proxy) should not
be inferred from the DNR order. DNR in and of itself is not sufficient to communicate health care
plans. When care plans are wrongly based on DNR status alone, there is a risk of providing or
withholding treatment against the patient’s wishes. In addition to a DNR order; physicians should
properly document the patient’s current health care directives, preferences, and care plans.
Misconceptions about CPR and DNR Orders
Patients/surrogates or family members may be reluctant to forgo CPR due to the following
misconceptions about the procedure and DNR orders:
• CPR:
— is a simple and non-problematic procedure with no risks or burdens
— is always successful in reviving the patient and restoring his/her previous level of function.
• DNR:
— means that death is imminent, or somehow the DNR order will cause or hasten death
— means that the patient should and will be ignored by the physicians, nurses, other staff
— means “absolutely nothing will be done” for the patient when the patient begins to die
— means that pain and symptom control measures will cease, and supportive care will end
— means that the patient is ready and willing, or wants to die.
Futility
• Defining futility is difficult in practice. People value things differently. Some may value
preserving life at all costs, while others may conclude that the quality of life is so poor that death
is the preferred outcome. Some may see hope in extremely small odds for success (“still hoping
for a miracle”), whereas others see an iappropriate prolongation of the dying process.
• There are many attempts to define futility. For example, one definition states that “when
physicians conclude (either through personal experience, experiences shared with colleagues,
or consideration of published empiric data) that in the last 100 cases, a medical treatment has
been useless, they should regard that treatment as futile.” This and other attempts to define
futility are imperfect because predetermined thresholds (such as 100 cases) are arbitrary, and
each patient situation and circumstances are uniquely differerrent.
• The Society of Critical Care Medicine (SCCM) states that treatments should be defined as futile
only when they will “not accomplish their intended goal.” Treatments that are extremely unlikely
to be beneficial, are extremely costly, or are of uncertain benefit may be considered
inappropriate and hence inadvisable, but should not be labeled futile.
• Futile treatments constitute a small fraction of medical care. Thus, employing the concept of
futile care in decision making will not primarily contribute to a reduction in resource use.
Nonetheless, communities have a legitimate interest in allocating medical resources by limiting
inadvisable treatments. This approach advocates that local communities draft procedures to be
followed in cases of dispute, with broad input from the community. The SCCM policy further
states that “[c]ommunities should seek to do so using a rationale that is explicit, equitable, and
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democratic; that does not disadvantage the disabled, poor, or uninsured; and that recognizes
the diversity of individual values and goals.” Policies to limit inadvisable treatment should: (a) be
disclosed in the public record; (b) reflect moral values acceptable to the community; (c) not be
based exclusively on prognostic scoring systems; (d) articulate appellate mechanisms; and (e)
be recognized by the courts.
• Decisions about futility should be made in concert with other healthcare workers, the patient/
surrogate, and the patient’s family members, only after:
--- Clearly articulating treatment goals.
--- Employing full disclosure and compassionate honesty when exploring a treatment’s likely
benefits and burdens from the patient’s and family’s perspective.
--- Clarifying misconceptions and unrealistic expectations about specific treatment.
--- Understanding that a universally accepted definition of the term futility does not exist.
--- Examining why a specific treatment might be unwarranted (futile) (e.g., lack of physiological
effect, low likelihood of survival for any meaningful period of time, poor quality of resulting life,
prolonged suffering).
--- Explicitly stating the values that will inform a decision of futility (e.g., short-term survival is,
or is not, a goal worth pursuing).
--- Refraining from using the concept of futility to justify the allocation of scarce resources.
--- Participating in a formal, procedural, institutional review, if differences cannot be resolved.
Futility Disputes
Futility disputes may occur between physicians and patients and/or families. Conflicts due to futility
disputes undermine medical care. Conflicts also cause distress and suffering; and also cause
coping and bereavement problems. Most of these conflicts involve a failure of physicians to
adequately advice patients and/or families about their condition, prognosis, and palliative care
options. This leads to expectations and requests for interventions that seem unreasonable to
physicians. Also, what appears to be a conflict about futility may sometimes be more related to a
grief reaction associated with the patient’s terminal illness. Instead of confrontations with patients
and/or families, there should be careful listening, empathetic support, and continued discussions.
Forgoing Life-Sustaining Treatment
In general, forgoing life-sustaining treatment may be considered if the treatment is:

• Therapeutically futile
A discussion of medical futility usually includes two different ideas: (i) the idea that no treatment
that prolongs life is therapeutically futile; and (ii) the idea that a treatment that could make no
significant contribution to the patient's cure or improvement, nor sustain the patient in a
tolerable condition, is therapeutically futile.
• Overly burdensome to the patient
Benefits hoped for (maintenance or improvement of health, preservation of life and relief of
discomfort) need to be balanced against foreseeable burdens (eg, pain, discomfort, loss of
lucidity, breathlessness, extreme agitation, alienation, repugnance, financial hardship).
• Not available without disproportionate hardship to the patient's family or others
This consideration (which may be misused or overused to justify the abandonment of a patient)
is reasonably clear in itself, although it is more often assumed rather than explained.
• Refused by the patient or the patient’s surrogate decision maker and family.
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Forgoing life-sustaining treatment in pediatric patients
Deciding to Forgo Life-Extending Treatment (1983), proposes a helpful guide for physicians.
Five considerations for determining a child's best interests includes:
• Suffering: the amount of suffering and the potential for relief
• Dysfunction: the severity of dysfunction and the potential for restoration of function
• Prognosis: the expected duration of life
• Potential to enjoy life: the potential for personal satisfaction and enjoyment of life
• Potential for self determination: the possibility of developing a capacity for self-determination
in the future.
Forgoing Treatment: Data-Gathering Questions for Physicians (Goold et al, 2000)

Ask the family
• What do you understand about what is going on?
• Why have you decided to _________?
• What are you hoping we can accomplish/achieve?
• What do you think ___________ would want us to accomplish for him/her?
• What else would he/she want us to accomplish?
• Which of these are the most important?
• In what situations, if any, could you imagine ___________ not wanting to continue to live?
• Are your questions getting answered? Do you have concerns about the care ____________ is
getting?
• Are there disagreements among family members?
Ask yourself
• What do I think are this patient’s chances of surviving to discharge/recovering function?
• What have I told the patient/family are his/her chances of surviving to discharge/recovering
function?
• How sure am I about his/her prognosis? On what is it based?
• What do I know about what this patient wants (or would have wanted)? How sure am I?
• Is this patient competent to make his/her own decisions? How do I know? How sure am l
• Could it be fluctuating or reversible incompetence?
• Did I/we contribute to a bad outcome in any way (e.g., missed diagnosis, delayed treatment)?
• How do I feel about discussing this patient’s death with him/her (his/her family)?
• Who is this patient’s “family doctor”? clergy of choice? primary nurse? social worker?
• Do I feel I have enough time to talk to the patient/family about prognosis, options, and goals?
• What words or phrases have I (or others) used that might be contributing to the conflict? (e.g.,
‘stopping treatment,” “comfort measures only,” “hopeless”)
• What aspects of this patient’s life do I feel justify withholding or withdrawing treatment?
• Does the family trust us? If not, why not?
Ask about social/organizational influences
• Are there financial pressures on the family?
• Are there financial pressures on the hospital?
• Are there financial pressures (in the medical team?
• Are families allowed to see what the patient’s day is like?
• Are there any concerns about malpractice or legality?
• Are there cultural or religious differences among the patient/family/physician/hospital?
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Withholding and Withdrawal of Life Sustaining Interventions
Withdrawal of Life-Sustaining Medical Interventions involves the intentional discontinuation of

an intervention already underway, even if death due to the underlying process is a probable
consequence of this action.
Withholding of Life-Sustaining Medical Interventions involves the intentional decision to not
start a particular medical intervention, allowing the patient to die from a known underlying process.
Removal of Ventilatory Support and Extubation

The act of removing life-support and extubating a patient is usually very emotionally difficult. It is
important that physicians discuss this decision with all who are involved in the patient’s care. These
discussions should be understanding, supportive and should address the ethical and legal issues
on the withdrawal of life-sustaining therapy. Specifically, the physician should address the
concerns of those who believe that withdrawal causes death. There is a fundamental causal
distinction between removing an impediment to death and engaging in an action that is both
necessary and sufficient to cause death. The removal of a ventilator only leads to the death of
patients who have an underlying disease process that requires ventilatory support. The mere act of
extubation will not cause death in an otherwise healthy patient once awakened from sedation.
Although the removal of the ventilator is necessary to cause the death, it alone is not always
sufficient to cause a patient's death. In contrast with physician-assisted suicide, the removal of
ventilatory support does not hinge upon the patient's underlying condition. Any discomfort and
distress during the process of removing ventilatory support should be relieved- usually with
appropriate opioids and sedatives. Neuromuscular blocking agents should never be given during
this time, because they have no analgesic or sedative properties and may mask symptoms of
discomfort and distress. In patients who are on neuromuscular blockers, these should be stopped,
and neuromuscular function should be restored before the ventilatory support is withdrawn.
Withholding and Withdrawing Artificial Hydration and Nutrition

Hydration and nutrition are traditionally considered useful and necessary components of good
medical care. They are provided with the primary intention of benefiting the patient. However, when
a person is close to death, artificial hydration and nutrition may provide little or no benefit to the
patient. They may also be potentially harmful to the patient and family, and cause more discomfort
and distress during the period of dying. For this reason, withholding or withdrawing artificial
hydration and nutrition near the end of life may be appropriate and beneficial medical care. Clinical
judgment and skill in assessment of individual clinical situations is necessary to determine whether
artificial hydration and nutrition are still appropriate measures to apply or not.
The withdrawal of enteral or parenteral nutrition and hydration in a patient who is dependent on
these should be justified by a burdens-benefits assessment of that therapy for that patient-- just as
it is for decisions to withdraw mechanical ventilation and all other forms of life-sustaining treatment.
Many may feel that withholding or withdrawing something so basic to human existence diminishes
the dignity of such patients and the humanity of the physician and caregivers. Also, because of the
symbolic significance of providing nutrition and hydration, forgoing them might seem to be
abandonment of a patient. Some ethical and legal thinkers believe that medically administered
nutrition and hydration should be considered medical interventions like any other; and they may be
discontinued on the same grounds as any other medical treatment. Therefore there is no logically
valid distinction between the withholding or withdrawal of a tube from the trachea to provide life-
sustaining treatment and the withholding or withdrawal of a tube from the intestine to provide life-
sustaining treatment. However, withholding artificial nutrition or hydration from a patient who is
conscious or in a persistent vegetative state, remains to be a controversial ethical and religious
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issue. The specialist should consider the patient and family’s religious and spiritual values, and
even offer a visit and consultation with their church or religious leader or adviser if needed.
Voluntary Cessation of Eating and Drinking

In the context of far-advanced illness, a competent patient can consciously choose to refuse food
and fluid. When a patient who is still capable of eating and drinking makes this decision with the
intention to hasten death, it can be distinguished from the natural anorexia and loss of thirst that
frequently accompany the end stages of dying. Some view this as a decision to forgo life-sustaining
therapy because such patients view eating and drinking as measures that prolong life without
value. Some consider such decisions to be a form of suicide. The physician should address any
physical, psychosocial, and spiritual problems and issues that may have led to the decision. The
patient's decision to refuse food and fluids also has the ethical advantage of being neither ordered
nor directed by the physician. In practice, however, the decision on whether to honor the patient’s
decision or not requires the support of the family, physician, and members of the health care team.
If the decision is made to provide nutrition and hydration, even by artificial means and against the
patient’s wishes, then the physician must relieve any discomfort caused by the intervention, and
ensure that the intervention does not become too burdensome for the patient. If the decision is to
honor the patient’s wishes, then any uncomfortable symptom during the process of fasting, should
be relieved. Dying can take several days to a few weeks, depending on the patient’s medical,
nutritional and metabolic condition. The family or physician may begin to doubt their decision as the
process unfolds, especially if the process is prolonged or the patient develops preterminal delirium.
If during a period of confusion or delirium, the patient persistently asks for food or beverage, it is
reasonable to offer it. If such requests persist, the plan should be reevaluated.
“Ordinary vs Extraodinary” and “Withholding vs Withdrawing”

Some physicians use distinctions such as “ordinary versus extraordinary” or “withholding versus
withdrawing” in guiding their practice as they think about ethical considerations in end-of-life
medical decisions. The presumption is that providing treatments that are classified as “ordinary” is
mandatory, whereas forgoing treatments that are “extraordinary” is morally permissible. Similarly,
some presume that withholding treatments is morally permissible but withdrawing them is not.
Although these distinctions are commonly used, most ethicists believe that these distinctions
confuse rather than clarify decisions at the end of life. Whether something is ordinary or frequent
does not determine whether it is morally required. Also, there is no clear moral difference between
deciding not to intubate a patient, because physicians do not think that the patient will benefit from
mechanical ventilation, and extubating a patient who has failed to respond despite a period of
mechanical ventilation. Ethical consensus maintains that such distinctions are not morally relevant.
No fundamental logical difference exists between the two to render one more morally acceptable
than the other. Understandably, some people would psychologically feel more responsible for the
outcome when it results from the withdrawal of a therapy than for the outcome that results from
withholding of a therapy. Indeed, many ethical experts have stated that it may be preferable to
favor withdrawal after an initial trial of treatment, especially if there is doubt about the decision
whether to start a therapy. Initiating a trial of therapy in situations of prognostic uncertainty allows
for a chance to determine whether the benefits outweigh the burdens.
Sedatives and Analgesics in the Care of the Dying
Despite several attempts around the world to educate physicians about end of life care, progress
has been slow. In the SUPPORT Study (1995) that examined the dying process of more than
9,000 seriously ill adult patients, 50% of patients experienced moderate or severe pain at least
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50% of the time during their last 3 days of life. Wolfe et al (2000) found that 89% of 103 parents
whose children died of cancer in a hospital reported that their children experienced suffering “a lot”
or “a great deal” from at least one symptom in their last month of life.
There are no prohibitions in ethics, in most religious traditions, and even in the law in most states,
that prevent physicians from treating and relieving the pain and suffering of terminally ill patients,
even when such treatment may carry a risk of hastening death.
How much analgesia or sedation is enough? Brody et al. (1997) have expressed the views of many
specialists in palliative care: “The optimal dose of morphine for relief of pain or dyspnea is
determined by increasing the dose until the patient responds. Patients who have not previously
received opioids should initially be given low doses, which should be rapidly increased until
symptoms are relieved. For patients with particularly severe or acute symptoms, rapid titration
requires that an experienced physician be at the bedside.” Specialists should clearly document the
signs and symptoms of distress and suffering and the reasons behind the regimen chosen to treat
these symptoms.
Ethical Considerations Related to Sedation at the End of Life

• Doing everything possible to relieve the patient’s intractable pain and other distressing
symptoms is an ethical imperative.
• Doing everything possible to relieve the distress of the family is also an ethical imperative
• Respecting and honoring the patient and family’s role in making decisions are essential
components of ethical decision making.
• Providing effective communication and clear, compassionate explanations about the rationale
and procedure of sedation and its possible effects on the patient are ethical necessities.
AAHPM Statement on Sedation at the End-of-Life (AAHPM, 2002)

“The American Academy of Hospice and Palliative Medicine regards sedation as a valid, ethically
sound, and effective modality for relieving symptoms and suffering in some patients reaching the
ends of their lives. Sedation is reserved for those in whom suffering is refractory and is not
ameliorated by the application of other appropriate palliative care measures. These appropriate
palliative care measures may include but are not limited to pain relief, non-pain symptom
management, mental health care and spiritual counseling.
As one of the many forms of palliative treatment, the use of sedating medications is intended to
decrease a patient’s level of consciousness to mitigate the experience of suffering, but not to
hasten the end of his or her life. Since this represents both an intention and an outcome that is
beneficial, sedation in these cases is ethically justified. It is not analogous to euthanasia or
physician-assisted suicide in which the primary intent is the death of the patient.
Careful patient and family assessment is a critical part of the evaluation process before sedation is
provided for any individual. Hospice and palliative care programs and healthcare providers should
undertake a thorough assessment of the alternative treatments available and engage in an open
interdisciplinary decision-making process. This process must include the patient, if able, and family
or other appropriate surrogate decision- makers, if the patient lacks decision-making capacity, in
order to assure informed consent. Rarely, in emergent conditions, sedation may need to be applied
prior to the appropriate discussions. In these cases, the discussions should take place as soon as
possible once the comfort of the patient has been ensured.
Patients for whom sedation may be appropriate are most often near death as a result of an
underlying disease process. Although the withdrawal of artificial hydration and nutrition commonly
accompanies sedation, the decision to provide, withdraw, or withhold such treatments is separate
from the decision whether or not to provide sedation.”
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Physician Assisted Suicide and Euthanasia
Physician-Assisted Suicide (PAS): A patient’s choice of suicide is assisted by a physician who

provides the pharmacological means and/or instruction on how to commit suicide without direct
physician participation in the actual administration of such means. Physician-Assisted Death (PAD)
is sometimes used interchangeably with physician-assisted suicide, but technically goes one step
further. Here a physician actually helps to administer oral or injectable medication with the primary
purpose of fulfilling a patient’s informed wishes to end life rather than endure further suffering. In
this respect, PAD is actually voluntary active euthanasia with a physician participating in the
administration of some pharmacologic agent.
Euthanasia: Applied to contemporary contexts, the term euthanasia is generally used to designate
the active provision, upon voluntary request, of a medication or other means, the primary intent of
which is to end life rather than simply to alleviate symptoms.
Patients experiencing much suffering may at times ask for assistance in ending their lives.
Suffering may come from many sources including fear of pain or other distressing symptoms,
isolation, or loss of dignity near the end of life. The physician’s obligation is to reduce this suffering
by increasing the awareness and availability of palliative care. Universal availability of
comprehensive palliative care would greatly reduce the perceived need for physician-assisted
suicide ("PAS") or euthanasia.
The physician must examine carefully the cause/s of the request for assisted suicide. Determine
and address the sources of physical, emotional, psychosocial, and spiritual distress and suffering.
Address the patient’s fears and’ perceptions of being an undue burden on family and caregivers.
Evaluate and treat depression when present. An open, caring, and understanding attitude
increases the chances of relieving distress distress and suffering.
Religion and Palliative Care (Ankeny et al, 2005)
Although discussions and medical decisions, especially decisions on withdrawal / withholding care
and futility, can be based purely only medical, ethical, and legal concepts and principles, palliative
care providers should always consider the religious and spiritual values and beliefs of patients and
families. Religious and spiritual values influence decision making by patients and families.
Religious traditions may have similar values and principles about death and dying, but they may
also differ in their moral concepts and ethical reasoning. Palliative care can engage various
religious traditions on the common ground of basic values (such as human dignity, the provision of
care, the sacredness of human life, non-violence, compassion, and selflessness). This provides a
relatively neutral ground for discussions and decision making. Most religions and cultures believe
that every human life has value and is sacred, and that dignity has to be preserved.
For most religious traditions, God Himself has placed sumpreme value on human life. Some
proponents of euthanasia tend to define the value of a person’s life on his/her productivity, material
happiness, material worth, or utility to society. On the other hand, the stance of most religious
traditions- and the Christian traditions in particular, upholds the fundamental rights, freedom, and
dignity of the person. A person's dignity comes from God's love for man, and palliative care
upholds God's love for the dying. From this perspective, palliative care upholds an individual's
worth. When a person is valued, he/she is cherished, preserved, cared for, venerated, and
nurtured- we cannot destroy something in order to show how much it is valued.The word dignity is
derived from the Latin dignus meaning worth, worthiness, or value. Palliative care gives dignity by
providing comfort, cleanliness, and by relieving suffering. A philosophy of care that conserves and
upholds the dignity of dying patients is an important aspect of palliative care.
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Catholic Religious Tradition
Direct and voluntary killing of a person is extremely wrong- it is a serious sin. Withdrawing or
withholding treatments with the intention of ending a person’s life is a wrong, irrespective of any
good motive-- it is morally equivalent to euthanasia or suicide. But withdrawing or withholding
treatments because they are futile or overly-burdensome (or have become so) is not equivalent to
euthanasia or suicide; instead, it is an acceptance of the human condition in the face of death.
If sedation is being used for mechanical ventilation and the ventilator will be withdrawn; and if there
are no other benefits obtained from continued sedation, then sedation should also be gradually
withdrawn. Sedation can be decreased to a level that provides comfort as well as adequate lucidity,
so that the patient will be able to say his/her goodbyes, receive sacraments, and/or prepare for
death. Withdrawing or withholding artificial nutrition or hydration from a patient in a persistent
vegetative state remains a controversial issue, even among church leaders.
Evangelical / Protestant / Anglican Religious Traditions
There is a range of views on withdrawing or withholding treatment- some may consider it as an
option, while others may want life extended at all costs. In general, there is a strong commitment to
the Bible as the final authority in matters of faith and life. They generally have similar views as the
Catholics, i.e. that life is sacred and voluntary killing is wrong; that physicians must continue to
preserve and prolong life, but they must also have the wisdom to know and accept when
treatments become futile; and that the withdrawal of treatment that is futile is acceptable.
Orthodox Jewish Religious Tradition
Judaism views life as sacred. A gosses is the state of being of someone who is dying until his/her
soul has departed. In Jewish law, the gosses should be treated, even if only to prolong life.
Nutrition, fluids / hydration, oxygen and ventilation, must not be withheld or withdrawn, even if they
need to be delivered by artificial means. Acts or interventions intended to hasten the death is
equivalent to murder. However, it may be permissible to make a gosses more comfortable, even if
the intervention might both ease and accelerate the patient’s dying. Treating pain and discomfort is
permissible. Some leaders will even allow for the risk of morphine-induced respiratory depression,
as long as the intention is clearly to relieve discomfort and not to hasten death.The withdrawal of
artificial ventilation is considered by many leaders as an overtly wrongful act, and is prohibited
except if the patient is brain dead.
Islamic Religious Traditions
Death is a stage of evolution, and eternal existence after death is determined by how a person
lived. Traditionally, most authorities agree that withdrawal of life sustaining treatment may be
acceptable if the patient is brain dead. If the person is still conscious, his/her eternal fate is still in
his hands, and he/she should be allowed to live every second of that life. Withdrawal of life-
sustaining treatment in a conscious patient is a form of euthanasia or suicide; and it is forbidden,
even with the patient’s permission, or even with the intention of decreasing suffering. Because both
traditional and modern movements exist, an open and honest discussion is needed to determine a
family’s values and wishes.Religious authorities may have different views. Most would prefer to
wait for nature to take its course and wait for the person to die, rather than withdraw life sustaining
measures. Others would consider withdrawing treatments that are too burdensome or withdrawing
treatments that prolong suffering while prolonging life. While others believe that moral values are
meaningless outside of religion.
Hindu Traditions
Hinduism has many sects with varying views. Classical Hindu literature distinguishes between
suicide, and voluntary religious death. Suicide is condemned. Voluntary religious death was
practiced by the incurably ill, or by those unable to perform the mandatory rites of bodily
purification. The law of karma (actions earn people merit or demerit) is also central to the classical
Hinduism. Suicide is a sin leading to hell; while religious self-willed death could remove bad karma,
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make amends for sin and produce good karma, leading to salvation. A religious self-willed death is
distinguished from suicide by a formal declaration of intention, and the exercise of willpower to
achieve it. With the introduction of British law in India, suicide became a criminal act, and it
includes all forms of self-willed death. Contemporary Hindu attitudes vary. Most leaders oppose
active euthanasia; but attitudes vary on the issue of withdrawing or withholding life sustaining
treatment, or the unnecessary prolongation of life.
Buddhist Religious Traditions
Buddhist traditions generally condemn suicide and premature ending of life. However, there are
different views about the dying process, and different opinions about withdrawing or withholding
life-sustaining treatment. Asian Buddhist scholars have generally avoided bioethical debates. Most
of the views on these issues have come from western Buddhist scholars, who extrapolate from
pertinent Buddhist principles. According to the concept of karma and the cycle of death and rebirth,
death occurs as a result of one’s actions and various external factors, and extraordinary methods
to prolong life interfere with this process and are useless. If the decision to withdraw or withhold
treatment is based on certainty that the patient will suffer needlessly from further treatment, and the
decision is taken in order to avoid further suffering and facilitate a better rebirth, then the decision
is acceptable. Dying is part of karma and the cycle of death and rebirth; therefore it is best to allow
the dying process to continue, while ensuring that the patient is as comfortable as possible.
Depression
As much as half of terminally ill people who expressed a serious desire for death may be suffering
from major depression. Patients who seriously consider euthanasia or physician-assisted suicide
are more likely to be depressed. It is important to recognize and treat major depression before
considering a request to withdraw life-sustaining treatment. Unfortunately, the diagnosis of major
depression in patients with serious illnesses is very difficult. Many features of major depression
(such as weight loss and sleep disturbance) are common in advanced diseases. Life-sustaining
treatments are often withdrawn if their continuation would provide no tangible benefit to the patient.
The decision to withhold these futile treatments is based upon many factors besides patient
preference. When a treatment is not futile, patient refusal is usually central to a decision to stop.
The physician must ensure that the refusal is not motivated by a major depression.
Request for Autopsies

Autopsies often are an important source of information for the physicians and the families of
patients who have died. Even with our modern diagnostic tests, autopsies still reveal important
diagnoses that were not suspected before death. Physicians need to know how to appropriately
seek consent for autopsy. The amount of information about the autopsy procedure needed to
persuade a family to give informed consent to an autopsy is difficult to determine; and providing
details about the autopsy procedure may itself create serious distress. Physicians should be aware
of and respect the religious or cultural beliefs of the patient's family. State the proposal clearly, eg
“We request your permission to perform an autopsy so that we may better understand why the
disease spread. This information will be helpful not only to you but to future families”. Ask open-
ended questions, eg “What are the most important concerns that you have about autopsy?” What
are the most important results you would like to obtain from an autopsy? Families should also be
informed that they have the right to refuse an autopsy, or request restrictions to the autopsy- but
these restrictions may result in incomplete information.
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Palliative Care of Patients with
9 Non-Cancer Illness
Palliative medicine provides a comprehensive form of care to patients with life-threatening or life-
limiting illnesses and their families- when the control of physical, psychological, social, and spiritual
sources of distress and suffering is important. Unfortunately, in the past, although many patients
might benefit from palliative care, it was almost exclusively confined to patients with advanced
cancer. The palliative care approach focuses on the relief of distress and suffering, the
improvement of the quality of life, preservation of dignity, good communication, and practical and
emotional support for patient, family and care givers. It is necessary for a range of chronic
debilitating non-cancer illnesses and should routinely be an integral part of their management.
When a non-cancer illness progresses, there is an inevitable decline in patients’ quality of life; and
patients become more concerned on the quality of their remaining life. Although palliative care is
gradually being embraced in medical practice, there is still a huge unmet need for patients suffering
from many non-malignant diseases. The availability and provision of palliative care to patients
dying from advanced non-cancer illnesses is an important focus of palliative medicine. The scope
of palliative care extends to all who need them, whatever their diagnosis.
TRIGGERS FOR CONSIDERING THE INITIATION OF PALLIATIVE CARE

Condition Triggers
General Progressive weight loss
Progressive functional decline
Recurrent hospitalizations
Congestive heart failure Prolonged or frequent hospitalization
Low ejection fraction,
Any decompensation resulting in ventilator use
Chronic obstructive pulmonary disease Prolonged or frequent hospitalization
Initiation of oxygen therapy
Any decompensation resulting in ventilator use
Kidney failure Symptomatic renal insufficiency
Dialysis
Liver failure Ascites
Low albumin
Esophageal varices
Gastrointestinal bleeding
Neurodegenerative diseases Difficulty swallowing
Pneumonia, but especially aspiration
Withholding or Withdrawal of Life Sustaining Measures in Patients with Advanced Diasease

(including Mechanical Ventilation and Dialysis)
(See also the previous chapter’s section on withholding, withdrawing, and forgoing treatment)
• Considerations for withdrawal: very limited life expectancy / very poor prognosis, poor quality of
life, refractory pain / discomfort / suffering, progressive incurable disease (including cancer,
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advanced CHF, dementia, AIDS, and others), unwilling or unable to tolerate further life
sustaining interventions, life sustaining intervention is diificult or impossible
• Discuss with the patient and family: goals of care and preferences, quality of life on dialysis,
symptoms and measures to relieve them; that withholding or withdrawal of life sustaining
treatment is an option; that withholding or withdrawal of life sustaining treatment can result in a
peaceful death and discuss the usual course.
• Allow time for discussion. Give them adequate time to discuss among themselves.
• Facilitate informed decision making and obtain consent to withdraw or withhold life sustaining
treatment
• Inform patient and family that they can change their decision at any time in the future, if they
want to – that their decision is reversible.
• Once a decision has been made to withdraw / withhold treatment, outline a plan with the patient
/ family, discuss advance directives and DNR order.
• Continue providing psychosocial, and spiritual support.
• Discuss preferred site of death, who will be present, funeral arragements, etc.
• Consider gradually stopping all non palliative medications, and order palliative medications and
other measures as needed for pain and other symptom control.
• Discuss with the patient and the family the plan and contingencies during the terminal phase
(the final hours), including management of terminal symptoms, 24 hr palliative care on-call
support, and that it may be appropriate not to call 911 or emergency services during this time.
• Emphasize that palliative care services are always available, on-call, and ready to help.
• Assess and help the family’s coping and grieving. Inform the family about bereavement
services.
HIV Disease, Multi Drug Resistant TB, Rabies and

Malaria
Human Immunodeficiency Virus (HIV) Disease
Human immunodeficiency virus (HIV) is a human retrovirus responsible for causing autoimmune
deficiency syndrome (AIDS). People continue to die from HIV infection and its related
complications. Because people survive much longer after infection with the development of better
treatment options, the prevalence of HIV/AIDS has gone up dramatically. Some patients have
acquired drug resistance as a result of early, suboptimal treatment. Others are unable to tolerate
antiretroviral treatment. Some are unable to benefit from better therapies, due to psychosocial
factors such as poverty, limited access to care, unmet basic needs such as adequate food or
housing, and concomitant psychiatric illness and/or substance abuse. Some patients die because
of end-stage liver or kidney disease, malignancy or treatment-related complications. Patients with
HIV infection require palliative care throughout the disease trajectory in order to alleviate suffering,
rrelieve pain and other distressing symptoms, to promote treatment adherence through reduction of
side effects and toxicity associated with therapy, to manage life limiting co-morbidities such as
cancers and end stage kidney and liver disease, and to provide quality end of life care for those
whom antiretroviral therapy fails or who are unable to access it. Palliative care significantly
improves patient outcomes in the physical, psychosocial, and spiritual domains of wellbeing.
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Mode of Transmission
Sexual intercourse (risk of transmission from one episode of unprotected intercourse is 0.01%,
increased with anal intercourse, genital ulcers, balanitis, cervical ectopy, and pelvic inflammatory
disease); percutaneous (intravenous drug use or occupational exposure, risk from a single needle-
stick is 0.3%, mucocutaneous exposure has a 0.09% risk); exposure from mother to child in utero,
at delivery, rarely from infected breast milk (risk of maternal-fetal transmission at delivery is 25%
but is reduced to 8% with continuous zidovudine infusion between 14 and 34 weeks of gestation,
during labor, and then as 2 mglkg every 6 hours for 6 weeks in infants postnatally.
Signs and Symptoms

fever, headache, malaise, arthralgias, myalgias, lymphadenopathy, hepatosplenomegaly,
pharyngitis, diarrhea, nausea and vomiting, anorexia, thrush, and mucocutaneous ulcerations of
the mouth, esophagus, and genitals; generalized morbilliform, salmon-colored rash on the face,
trunk, palms, and soles; neurologic involvement (meningoencephalitis, peripheral neuropathy,
facial palsy, Guillain-Barre syndrome, brachial neuritis, radiculopathy, cognitive impairment, or
psychosis).
During early HIV disease (CD4+ count >500/wL): Most patients are asymptomatic until severe
depletion of CD4+ lymphocytes occurs. Lymphadenopathy may be seen (especially cervical,
axillary, and inguinal sparing the periaortic and mediastinal nodes; thoracoabdominal nodes
suggests an opportunistic infection such as lymphoma, mycobacterial, or fungal disease).As CD4+
count drops below 500/pL, opportunistic diseases and AIDS-related complications are seen.
Evaluation
Complete history and physical examination should be performed regularly, including: pelvic
examination with Pap smear and testing for sexually transmitted diseases as indicated, neurologic
examination (for early signs of HIV-related neurologic disease or encephalopathy); ophthalmologic
examination especially if visual symptoms are present.
Laboratory Tests
In the complete blood count (CBC), an initial relative lymphopenia (CD4+ and CD8+ T cells) is
followed by lymphocytosis (with atypical lymphocytes, but CD4+ count never recovers). CD4+ cell
count is a predictor of clinical outcome. Enzyme-linked immunosorbent assay (ELISA) detects
antibodies to HIV core proteins and surface glycoproteins and is useful after the first 4 to 12 weeks
of infection after the body has developed antibodies to HIV. ELISA is a good initial screening test.
In Western blot, which has a higher sensitivity than ELISA HIV antigens are separated by
electrophoresis, and specific antibodies in sera bind to viral antigens and can be visualized. Viral
load: high levels of free circulating virus (500,000 to 2 million copies) are detectable before specific
anti-HIV antibodies and decreases as anti-HIV antibodies emerge. Viral load is a very useful
predictor of clinical outcome. HIV-1 p24 antigen test is also positive before the development of
antibodies.
Routine laboratory tests to consider: CBC (baseline, then every 3 to 6 months); CD4+ count
(baseline, then every 6 to 12 months for CD4+ count >500/pL and every 3 to 6 months for CD4+
counts <5OO/pL); plasma viral load (baseline, then every 3 to 6 months; blood chemistries
(including renal function and transaminases, baseline, then as needed); purified protein derivative
(PPD) test (baseline unless patient has a known history of positive or active tuberculosis, then
yearly if negative); serologic test for syphilis (baseline, then yearly); hepatitis B and C (baseline);
toxoplasma immunoglobulin G (IgG) (baseline); varicella zoster antibody (baseline); measles
antibody (baseline, for patients born after 1957); hepatitis A (HAV) (IgM IgG if patient is a
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candidate for the HAV vaccine).
Management
Prevention of transmission
Transmission can be reduced through safe sex practices. Spermicides and douching are not
effective. Pregnant women should bottle-feed their infants. Occupational exposures can be
minimized by adherence to universal precautions. After a known exposure, prompt treatment
(within hours of exposure) with AZT 200 mg by mouth three times a day for 4 weeks (with or
without lamivudine or protease inhibitors) decreases seroconversion by up to 80%.
Treatment and prophylaxis of other infections

All patients with a PPD reaction greater than or equal to 5 mm, or who have been exposed to
someone with active TB, or who have had prior positive PPD without treatment should receive
isoniazid prophylaxis. Tuberculosis in AIDS patients may be extrapulmonary and resistant to
several drugs. Patients at risk should be given the hepatitis B vaccine. Know when all
vaccinations are performed and avoid measuring viral load within 6 weeks as it will likely be
elevated. Avoid live vaccinations (oral polio vaccine and vaccinia virus vaccination). The following
vaccines should be given: measles, mumps, and rubella (MMR) vaccination, influenza
vaccination (first visit, then every year); pneumococcal vaccine (first visit, then every 6 years)
hepatitis vaccine (if the patient is in the appropriate risk group, e.g., homosexual men, or if the
patient is coinfected with hepatitis B or C). A variety of viral and fungal infections may occur in
patients with AIDS. Prophylactic therapy has to be individualized and based on balancing the
severity and frequency of infections with the side effects and danger of interactions between
medications. Preventative medications are prescribed when there is specific reason to believe they
are necessary, either because it has already happened in the past, or the person has a known
exposure to the illness.
Pneumocystis carinii pneumonia (PCP) prophylaxis should be given to all patients who have had
a previous episode of PCP, have a CD4+ count t 200 cells/pL, or have had thrush (trimethoprim-
sulfamethoxazole, pentamidine, oral dapsone, atovaquone).
Mycobacterium avium complex prophylaxis should be given to patients with CD4+ count <75
cells/pL (rifabutin, clarithromvcin and azithromvcin).
Toxoplasmosis prophylaxis should be given to seropositive patients (trimethoprim-
sulfamethoxazole, dapsone, atovaquone). Toxoplasmosis infection commonly affects the brain and
shows the characteristic ring of enhancing lesions on CT scan. Initial treatment is with sulfadiazine
plus pyrimethamine, with clindamycin as an alternative. Corticosteroids reduce cerebral edema.
Patients should be advised to avoid eating raw or undercooked meat and contact with cat feces.
Cytomegalovirus prophylaxis should be given to patients with CD4+ 150 cells/pL (oral
ganciclovir).
Anti-retrovirals
Anti-retroviral medication is recommended for all infected patients with symptoms or a viral load
greater than 5,000 copies except those with a CD4+ count >500/pL and a viral load between 5,000
and 30,000 copies, in whom it should be considered if the risk-benefit ratio is otherwise favorable.
Anti-viral medication is recommended for patients with a viral load less than 5,000 copies as well
as a CD4+ count < 350 cells/pL. It should be considered in patients with a CD4+ count between
350 and 500 cells/pL. There are many acceptable medication combinations. They are constantly
changing; the most commonly used include: Two nucleoside-analog reverse transcriptase
inhibitors (NRTls) plus a protease inhibitor (for example, zidovudine and didanosine, or zalcitabine,
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or lamivudine and efavirenz, or nevirapine; stavudine and didanosine, or lamivudine and efavirenz,
or nevirapine); two NRTls plus a non-NRTI (involves fewer pills); Two NRTls plus two protease
inhibitors (higher potency); Three NRTls (stavudine + lamivudine + abacavir).
Comorbid Illnesses Predicting Poor Outcome in People with HIV Disease

• Cirrhotic decompensation (often related to hepatitis B or C)
• Non-Hodgkin’s lymphoma, if unresponsive to therapy
• Hodgkin’s lymphoma, if unresponsive to therapy
• Progressive multifocal leukoencephalopathy
• Primary central nervous system lymphoma
• Any metastatic neoplasm
• Intractable substance abuse
• Any opportunistic infection unresponsive to therapy
Palliative Care
Palliative care includes interventions that respond to the physical, emotional, psychosocial,
spiritual, and bereavement needs of patients with HIV/AIDS and their families; from the time of
diagnosis, through final stages of disease and death.
HIV/AIDS affect all age groups, including children of infected parents and elderly individuals. Entire
families may be infected. Psychosocial problems may include bereavement and loss of
relationships, unemployment, disability, burdensome health care costs and demands, stigma and
ostracism, and fear of premature death. Many people die alone, ashamed, alienated and
unprepared. Palliative care should facilitate social reconciliation for patients who have rejected, or
have been rejected by their families, friends, and other community support.
Deaths from end-stage liver or renal disease and from cancer are increasing and are beginning to
outnumber deaths from AIDS-related opportunistic infections. Uncertainty in the course of the
disease may cause emotional and spiritual distress. Avoidance of end-of-life discussions by
physicians, families, and patients can deny patients and families the chance to plan their lives to
have completion and closure.
Multidrug Resistant Tuberculosis (MDR-TB)
TB causes approximately 3 million deaths a year worldwide. Multidrug-resistant tuberculosis (MDR-

TB) is tuberculosis that is due to Mycobacterium TB that is resistant to at least isoniazid and
rifampicin, the two most powerful TB drugs. Drug resistance is mainly due to improper drug
treatment and poor patient treatment compliance.Compared to drug-susceptible TB which can
usually be cured within 6 months, MDR-TB require more aggressive drug therapy with more side-
effects and disease and treatment-related complications. There are about 300,000 new cases per
year of MDR-TB worldwide. Strains are also becoming more resistant, with about 80% of MDR-TB
being resistant 3 or more of the main TB drugs (extensively drug resistant TB, XDR-TB). MDR-TB
is difficult to treat and leads to death in most cases.
Complications of TB
hemoptysis, pleural effusion, pneumothorax, cor pulmonale, bronchiectasis, pulmonary fibrosis
Extrapulmonary TB
lympadenitis, pleuritis, meningitis, pericarditis, peritonitis, urogenital and skeletal TB.
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Evaluation
• Many apparent treatment failures are due to poor treatment compliance and not MDR-TB.
Consider a standard supervised treatment regimen if this is the case.
• Clinical deterioration during treatment can be due to factors other than MDR-TB. Bacteriological
and radiological tests should be done.
• Deterioration noted in a chest X-ray may be due to: actual treatment failure, intercurrent
pneumonia, pulmonary embolism, or cancer. A repeat CXR in 2-3 weeks will show improvement
for treated pneumonia or pulmonary embolism.
• Bacteriological tests are used to determine treatment failure. Patients with smear positive
sputum at 2-3 monrths should be evaluated for treatment compliance. If there is clinical and
radiological improvement, continue standard the treatment and monitor closely for signs of
deterioration. If there is no evidence of improvement, then cultures and susceptibility tests
should be done. Positive cultures at 3 and 6 months are significant, and drug susceptibility tests
should be done.
Management
• Directly observed therapy using other essential TB drugs such as streptomycin, pyrazinamide,
ethambutol; and second line drugs such as aminoglycosides (amikacin, kanamycin),
fluoroquinolones (ciprofloxacin, ofloxacin), thioamides (ethionamide, prothionamide) and
cycloserine. Treatment duration is usually 18-24 months, with 4 months of initial intensive
therapy. Closely monitor of treatment compliance.
• Relieve treatment related nausea and vomiting (usually due to ethionamide, ethambutol,
ofloxacin, and isoniazid). Consider anti-emetics, such as metoclopramide. If NV continues then
stop the offending drug, then restart at a lower dose and gradually increase the dose as
tolerated. If NV recurs, stop or change the drug.
• Psychosocial counseling and support. Improve understanding, compliance, and motivation. If
treatment fails, and further treatment is futile, palliative care should be continued. If the patient
remains smear/culture positive after 7-9 months of treatment, cure is unlikely and the patient
and family should be offered palliative care.
• Educate the patient and family on infection control measures: proper coughing, disposal of
sputum, adequate room ventilation, etc. Evaluate cases of exposure and manage appropriately.
• Management of common syptoms: dyspnea, cough, chest pain, increased secretions,
hemoptysis, fatigue, anorexia, cachexia, night sweats, and fever
• Psychosocial and spiritual care and support.
Rabies Encephalomyelitis
Rabies encephalomyelitis is fatal in previously unvaccinated patients is fatal. There are 50,000 to
100,000 cases per year worldwide.
Symptoms
Early symptoms include non-specific flu-like symptoms, pain, localized paresthesia and pruritus.
Later clinical presentation is either encephalitic or paralytic. Death is inevitable, and many patients
die within 72 hours of symptom onset.
Encephalitic Rabies: hydrophobia (exaggerated reflex of the respiratory tract with laryngeal
spasm), episodic hyperactivity, hyperventilation, seizure, increased salivation, sweating, delirium
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with aggressive behavior, disorientation, hallucinations, overwhelming fear, hyperexcitability,
hypervigilance, and confusion.
Paralytic Rabies: ascending paralysis similar toGuillain-Barre syndrome
Management of Common Terminal Problems

• Delirium: Haloperidol (A: 5 mg C: 0.1 mg/kg, SC/IM , q hourly until desired effect, followed by
doses given q 4hrs. A benzodiazepine (eg midazolam, diazepam) may need to be added for
further sedation.
• Secretions: Anticholinergics (hyocine butylbromide, glycopyrrolate), or older anti-histamines
such as Diphenhydramine (A: 25-50 mg, C: 0.5-1 mg/kg, PO/IM/IV, q 4-6 hrs)
• Seizures: Antiseizure medications such as benzopdiazepines (midazolam, lorazepam,
diazepam), and Phenobarbital
• Nausea and Vomiting: haloperidol, metoclopramide
Malaria
Malaria is a life threatening illness causes by the Plasmodium parasite, transmitted by the female
Anopheles mosquito. It causes approximately 2 million deaths each year worldwide.
Symptoms and Signs
Symptoms of uncomplicated malaria include: fever, chills, headache, backache, malaise, irritability,
sweating, vomiting, and abdominal pain. This may be followed by hepatomegaly, splenomegaly,
anemia, and jaundice.
Symptoms and signs of severe malaria include: CNS problems (confusion, delirium, seizures,
obtundation, coma), acute renal failure, bleeding, pulmonary edema, hypoglycemia, acidosis,
hyperparasitemia ( >5% of RBCs are infected).
Evaluation
Complete history and physical examination. Tests may include: microscopy of thin and thick blood
smears, rapid antigen determination tests
Management of Severe Malaria

• Prompt treatment with anti-malarial drugs (quinine, quinidine, artesunate, artemether,
artemisinin)
• If treatment fails, or becomes futile, the palliative care should be continued.
• CNS problems: Delirium (treat potentially reversible causes, quiet room, antipsychotics (eg
haloperidol), benzodiazepines may need to be added to the antipsychotic medication.
• Seizures: Antiseizure medications such as benzopdiazepines (midazolam, lorazepam,
diazepam), and Phenobarbital
• Pain: may be due to muscle spasms. Consider Baclofen (A: 5-10 mg C: 0.1 mg/kg, PO/SC/IM,
tid), or bezodiazepines. If the pain is not relieved, opioids may be needed.
• Fever: acetaminophen/ paracetamol
• Psychosocial and spiritual care and support
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Advanced Heart Failure
Heart failure is a clinical syndrome characterized by inadequate systemic perfusion to meet the
body's metabolic demands as a result of impaired cardiac pump function. This may be further
subdivided into either systolic or diastolic heart failure. In systolic heart failure, there is reduced
cardiac contractility, whereas in diastolic heart failure there is impaired cardiac relaxation and
abnormal ventricular filling.
Heart failure is a common syndrome, especially in the elderly. Although medicine has advanced,
there is still about 20% overall annual mortality, especially in patients with New York Heart
Association Class IV symptoms. Patients experience progressive pump failure and congestion, and
as much as half die from fatal arrhythmia and sudden cardiac death. Some patients die from end
organ failure due to inadequate perfusion- especially kidney failure. Indicators of poor prognosis
include ventricular arrhythmias, higher NYHA Heart Failure Class, lower left ventricular ejection
fraction, high catecholamine and B-type natriuretic peptide levels, low serum sodium,
hypocholesterolemia, and marked left ventricular dilatation. Patients with combined systolic and
diastolic heart failure also have a worse prognosis than patients with either in isolation.
Prognosis in patients with CHF remains unfavorable and poor despite aggressive therapy.
Cumulative mortality at four years in patients with only mild to moderate heart failure is about 50%,
a mortality rate worse than that of many cancers. Advanced heart failure involves severe refractory
symptoms despite treatment, marked left ventricular dysfunction (resting ejection fraction [EF] of
less than 30%), and poor exercise capacity (less than 14 mL/kg/min on symptom-limited exercise
test or 4 metabolic equivalents of task).
Stage A includes patients at risk of developing heart failure but do not have structural heart
disease or symptoms of heart failure. These include patients with hypertension, diabetes mellitus,
coronary artery disease, use of cardiac toxins, and familial history of cardiomyopathy.
Management should include risk factor reduction; treatment of hypertension/ diabetes/coronary
disease to prevent progression, and the use of ACE inhibitors or ARBs in selected cases.
Stage B includes patients with structural heart disease but no symptoms of heart failure. Consider
ACE inhibitors and beta-blockers. These include patients with left ventricular hypertrophy, previous
myocardial infarction, left ventricular systolic dysfunction, or valvular heart disease. All patients
would be considered to be NYHA class I.
Stage C includes patients with structural heart disease and current or previously symptomatic
heart failure. Diuretics, digoxin, and aldosterone antagonists may be added to ACE inhibitors and
beta-blockers depending upon the severity of symptoms. Cardiac resynchronization, and
revascularizatiuon therapy may be considered. Patients can be NHYA class I to IV.
Stage D includes patients with refractory symptoms of heart failure. Physicians are urged to
consider either palliative and hospice care or aggressive therapies such as regular use of IV
inotropes, ventricular assist devices, and cardiac transplantation. All patients would be considered
to be NYHA class IV.
New York Heart Association (NYHA) Heart Failure Symptom Classification System
Class I: No symptom limitation with ordinary physical activity.
Class II: Ordinary physical activity somewhat limited by dyspnea (ie, long distance walking,
climbing 2 flights of stairs).
Class III: Exercise limited by dyspnea at mild work loads (ie, short distance walking, climbing one
flight of stairs).
Class IV: Dyspnea at rest or with very little exertion.
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Most patients have signs and symptoms of pulmonary congestion including dyspnea, orthopnea,
and paroxysmal nocturnal dyspnea. Others, however, do not have congestive symptoms but,
rather, signs and symptoms of low cardiac output including fatigue, effort intolerance, cachexia,
and renal hypoperfusion. Patients with right ventricular failure have jugular venous distention,
peripheral edema, hepatosplenomegaly, and ascites. On physical examination, patients with
decompensated heart failure may be tachycardic, tachypneic with bilateral inspiratory rales, jugular
venous distention, and edema. They are usually pale and diaphoretic.
The initial evaluation of new onset heart failure should include an electrocardiogram, chest
radiograph, and also consider B-type natriuretic peptide assay. The cardiac rhythm may be normal
sinus, sinus tachycardia, or atrial fibrillation. Left ventricular hypertrophy, left bundle branch block,
intraventricular conduction delay, and non-specific ST segment and T wave changes support a
diagnosis of heart failure. Q waves in contiguous leads strongly suggest a previous myocardial
infarction and coronary atherosclerosis as an etiology. Chest radiographic findings include
cardiomegaly, pulmonary vascular redistribution, pulmonary venous congestion, Kerley B lines,
alveolar edema, and pleural effusions. Echocardiography may distinguish between systolic and
diastolic dysfunction. Cardiac catheterization may diagnose coronary atherosclerosis as the cause
of heart failure. Functional capacity and ischemia can be evaluated with stress testing. BNP levels
correlate with severity of heart failure and decrease as patients reach a compensated state. This
test may be useful for distinguishing heart failure from pulmonary disease. Since smokers often
have both of these clinical diseases, differentiating between them may be challenging.
Findings Associated with Poor Prognosis in Advanced Heart Failure

Laboratory data: Na < 136 mEq/L; serum Crea > 2 mg/dL; increased BUN
Functional status: needs help in activities of daily living; NYHA class III or IV for 3 months; 6 minute
walk distance < 300 meters; peak oxygen consumption during exercise testing of less than
14ml/kg/min (4 METS)
Symptoms: persistent orthopnea
Comorbid illnesses: COPD, cancer, liver cirrhosis, dementia, stroke, kidney failure
Age: > 70 yrs old
Vital signs: tachycardia, increased respiratory rate, abnormal blood pressure (either high or low)
Ventricular function: ejection fraction of 25% or less
Advanced Heart Failure

Advanced heart failure patients who require palliative care are usually Stage D patients, with
persistent symptoms limiting daily activities despite optimal therapy (either persistent NYHA class
III or IV) and marked ventricular dysfunction. Symptom management is an important part of
treatment. Continue to manage reversible or precipitating factors that exacerbate CHF.
Pharmacologic therapy continues to include maximal doses of ACE inhibitors, digoxin, diuretics,
and other combinations of afterload therapy if ACE drugs are not tolerated. Spironolactone may
improve mortality in NYHA class IV patients, but beta-blocker therapy is not clearly indicated for
this group of patients, particularly if it causes more frequent exacerbations and worsening
symptoms. Use of other inotropic therapy, antiarrhymic agents, and anticoagulants should be
based on a risk-benefit assessment. But it can be difficult to assess the risks and benefits of newer
invasive procedures without large clinical trials documenting efficacy. For example, coronary artery
bypass grafting can improve 3 year survival by 30-50% and physical functioning by one NYHA
class with moderate-to-severe CHF, but operative mortality ranges from 5-30% depending on EF,
comorbidity, the expertise of the hospital and its specialists, and other patient specific factors.
Vasodilator therapy can produce sustained functional improvement, decrease hospitalizations, and
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improve survival in mild-to-moderate heart failure. Although ACE therapy can prolong survival in
advanced heart failure, mortality rates up to 35% are still reported. Unfortunately, most patients will
eventually have progressively worsening symptoms despite vasodilator therapy, with two-year
mortality rates of 20-60%, depending on disease severity.
Management
• Dietary sodium and fluid restrictions should be implemented in all patients with congestive heart
failure. Limiting adult patients to 2 gm per day of dietary sodium and 2 liters per day of fluid will
lessen congestion and lower the need for diuretics. Cardiac rehabilitation may improve
symptoms and exercise tolerance in patients with heart failure. This will also reduce or prevent
skeletal muscle atrophy that may worsen exercise tolerance. Weight loss in encouraged in
obese patients. Patients should be counseled about smoking cessation.
• Angiotensin Converting Enzyme (ACE) Inhibitors. ACE inhibitors relax both arterial and
venous smooth muscle, thus reducing venous capacitance (preload) and resistance to left
ventricular ejection (afterload). These drugs are important for palliation in CHF because of
beneficial effects on CHF symptoms and quality of life. They improve mortality, heart failure
symptoms, exercise tolerance, left ventricular ejection fraction as well as reduce emergency
room visits and hospitalizations. ACE inhibitors conserve potassium through inhibition of
aldosterone secretion, preventing the hypokalemia caused by diuretics and dcreasing the need
for potassium supplements. Start with low initial doses of ACE inhibitors, eg Enalapril (A: 2.5-5
mg C: 0.05-0.1 mg/kg/day, PO, qday) particularly if the patient's serum sodium is less than 135
mg/dL, which, in the absence of other causes of hyponatremia, suggests a high level of plasma
renin activity. Moderate asymptomatic hypotension or azotemia (eg, serum creatinine less than
2.5 mg/dL) is acceptable with ACE inhibitors and is an indication to reduce the diuretic dose if
jugular venous pressure is normal. Symptomatic hypotension or progressive renal insufficiency
may require discontinuation of ACE inhibitors. The main side effect from ACE inhibition is
cough, which may necessitate change to an angiotensin-II receptor blocker (ARB) or the
combination of hydralazine and nitrate. Note that most patients who cough on ACE inhibitors
have this symptom because of congestive heart failure rather than ACE intolerance, and may
improve with further diuresis. Two uncommon side effects of ACE inhibitors are angioedema
and acute renal failure (because of bilateral renal artery stenosis), both require the immediate
cessation of the drug.
• Angiotensin Receptor Blockers (ARBs). These agents (eg irbesartan, candesartan,
valsartan, losartan, telmisartan, eprosartan and olmesartan) block the effects of angiotensin-II
at the receptor level. These agents are similar to ACE inhibitors and also improve morbidity and
mortality. They may also improve morbidity when added to ACE inhibitors and have fewer side
effects. They are useful in patients who are intolerant to ACE inhibitors because of cough or
angioedema. They should not be substituted for ACE inhibitors in cases of hyperkalemia or
renal dysfunction because they cause similar problems.
• Beta-blockers. Beta blockers can be useful for the early stages of CHF, where they may have
a beneficial effect on mortality. From the standpoint of symptom management, although these
drugs may provide some benefit in patients with mild to moderate disease, they may cause
significant worsening of decompensation and dyspnea in patients with severe, unstable
disease.
Three beta-blockers, carvedilol, metoprolol succinate and bisoprolol have been shown to
improve survival in patients with heart failure. Metoprolol (A: 25-50 mg C: 0.25-0.5 mg/kg, PO,
bid-tid); carvediol (A: 3.125 mg, PO, qd-bid, gradually increased to 25 mg/day); and bisoprolol
(A: 2.5-5 mg, PO, qday). Myocardial oxygen consumption is reduced with beta-blockers,
primarily due to a reduction in heart rate. In heart failure patients, a beta-blocker should be
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initiated at a low dose and up titrated slowly as tolerated to target levels. They are used for
NYHA Class I - III heart failure. They can be used carefully in NYHA Class 4 patients who are
euvolemic. Diuretic use must be optimized to achieve euvolemia during a trial of beta-blocker
use.
• Digoxin. Digoxin is a weak oral inotrope whose main effect in heart failure is neurohormonal
modulation of centrally mediated sympathetic activity. Digoxin reduces some heart failure
symptoms, and the rate of hospitalization, but has no effect on mortality. Digoxin is renally
excreted and so dose adjustment is necessary in renal failure. A low dose of digoxin (A: 0.125
mg C: 2-2.5 mcg/kg, PO/IV/IM, daily) should be given to most patients. Low doses can be just
as helpful as higher doses, and with less risk of toxicity. It is used in patients with left ventricular
systolic dysfunction who remain symptomatic while receiving standard medical therapy,
particularly if they are in atrial fibrillation. Withdrawal of the drug can worsen CHF symptoms.
Patients who are already taking the drug should probably continue it at doses low enough to
avoid digitalis toxicity, which can be difficult to diagnose in patients already seriously ill with
cancer, heart disease, or both. Amiodarone can increase digoxin levels.
• Diuretics. Although nonpharmacologic measures such as reduction of salt intake are helpful,
end-stage CHF requires diuretics to relieve fluid overload. Diuretics relieve congestion and treat
hypertension. Usually a loop diuretic is required, such as furosemide in once-or twice-daily
doses, with the addition of a thiazide diuretic in patients refractory to the loop diuretic alone.
Adequacy of diuresis can be easily assessed non-invasively at the bedside by testing for
hepatojugular reflux. With the patient sitting upright at approximately 30°, the right upper
quadrant is compressed - which may then reveal an enlarged and tender liver due to congestion
- and if elevated left ventricular filling pressure is present, increased jugular venous distention
will be seen. This may indicate the need for a higher diuretic dose.
When venous pressure remains high despite increasing doses of loop diuretics and sodium
restriction, add metolazone (A: 2.5-10 mg, C: 0.1-0.2 mg/kg, PO, daily or every other day) given
one hour prior to the loop diuretic. Since pronounced kaliuresis may result, serum potassium
levels should be monitored and potassium replacement provided if serum levels fall below 4
mg/dL. For many patients on furosemide alone, administration of a potassium-sparing diuretic
such as spironolactone or amiloride can decrease the need for potassium supplements.
Although useful for symptomatic relief, diuretics have not been shown to improve survival and
may cause azotemia, hypokalemia, and metabolic alkalosis. Fluid depletion can be as harmful
to comfort and quality of life as fluid overload can be. Significant fatigue, hypotension, or
azotemia with normal jugular venous pressure may need a reduction in diuretic therapy. Since
diuretic requirements can vary with diet and activity level, patients should be counseled to
weigh themselves each morning and adjust their diuretic dose to maintain weight within a range
in which their symptoms of pulmonary congestion - dyspnea, orthopnea, or paroxysmal
nocturnal dyspnea - are minimal. Using control of peripheral edema as an endpoint can result in
overdiuresis since edema may be due to peripheral venous insufficiency rather than CHF.
• Aldosterone Antagonists. Aldosterone antagonists, such as spironolactone (A: 25-50 mg C:
0.5-1 mg/kg, PO, qd-tid), may prevent the effects elevated levels of aldosterone caused by
Angiotensin II stimulation and decreased hepatic clearance of aldosterone due to liver
congestion, which include: sodium and water retention, potassium excretion, endothelial
dysfunction, myocardial hypertrophy and myocardial fibrosis. Patients may develop
hyperkalemia, monitor serum potassium levels closely. Avoid use in patients with poor kidney
function, especially if creatinine >2.5 mg/dl. 8% of men develop gynecomastia.
• Hydralazine and Nitrates. Hydralazine and nitrates (e.g. isosorbide dinitrate) in combination
are effective afterload and preload reducing agents used in ACE-I and ARB-intolerant patients.
Hydralazine (A: 10-20 mg C: 0.1-0.2 mg/kg, PO/IV/IM, tid-qid); and isosorbide dinitrate (A: 10
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mg C:0.2 mg/kg, PO, bid-tid). ACE inhibitors and ARBs have a mortality benefit over
hydralazine and nitrates and thus should be the agents of choice. The once daily dosing of ACE
inhibitors is easier than the TID dosing of nitrates and QID dosing of hydralazine. Hydralazine
and nitrates may be added to the ACE-I and/or ARB when additional vasodilation is needed or
pulmonary hypertension is present. Be careful when using hydralazine in patients with kidney
and/or heart disease. Hydralazine may cause reflex tachycardia, and a lupus-like syndrome that
is usually reversible.
• Parenteral Vasodilators
• Nitroglycerin: (A: 5 mcg/kg/min IV, increase by 5 mcg/kg/min as needed, max: 20 mcg/kg/min;
C: 0.25-0.5 mcg/kg/min IV, increase by 0.5 mcg/kg/min q 5-10 min as needed, max: 5
mcg/kg/min, usual effective dose range is 1-3 mcg/kg/min). Nitroglycerin is a nitric oxide donor
that increases the intracellular concentration of cGMP in endothelial and smooth muscle cells
causing vasodilation. It is predominantly a venodilator, and to a lesser extent, an arterial
vasodilator that reduces cardiac preload and alleviates pulmonary congestion. It is also a
coronary artery vasodilator and is useful in patients with heart failure and myocardial ischemia.
IV nitroglycerin requires dose-titration in order to achieve therapeutic goals, and the
effectiveness of prolonged infusions is limited by the development of tolerance within the first 24
hours. May cause headache, flushing, GI upset, blurred vision, and methemoglobinemia. Use
carefully in severe kidney dysfunction, increased ICP, liver failure, glaucoma, and anemia.
• Sodium Nitroprusside: (A,C: 0.3-0.5 mcg/kg/min, increase dose as needed, max: 10
mcg/kg/min). Sodium nitroprusside is a potent short-acting arterial and venous vasodilator. It is
used as an afterload reducing agent in patients with acute decompensated heart failure and
adequate systemic blood pressure. After the patient is stabilized, gradually convert to oral
vasodilators such as ACE inhibitors, ARBs, or hydralazine/nitrates. Avoid in patients with active
ischemia due to the risk of "coronary steal syndrome" which shunts blood away from the
ischemic myocardium to well-perfused muscle. IV infusions require close monitoring. Infuse
only for a short duration in patients with kidney disease to avoid accumulation of thiocyanate, a
metabolic byproduct that is excreted by the kidney. Nonenzymatically converted to cyanide
(may cause acidosis and methemoglobinemia), which is converted to thiocyanate (may cause
psychosis and seizure). Monitor thiocyanate levels if used > 48 hrs (should be <50 mg/L).
• Nesiritide. Nesiritide, synthetic B-type natriuretic peptide, is an arterial and venous vasodilator
with modest diuretic and natriuretic properties. Nesiritide is administered as a bolus followed by
a continuous intravenous infusion for 1 to 3 days as treatment for decompensated heart failure
with fluid overload. It does not require invasive hemodynamic monitoring or frequent titration.
Tolerance to the drug does not occur and it is not arrhythmogenic. Nesiritide probably is more
effective than nitroglycerin in normalizing hemodynamic abnormalities and improving
symptoms.
• Oxygen Therapy. Oxygen therapy is used for patients with hypoxemia. The therapeutic target
is to maintain an oxygen saturation greater than 90% during rest, sleep, and exertion. Patients
may nocturnal oxygen desaturation that is due to the disease and not sleep apnea. Sleep
quality may be impaired; patients should be asked about sleep quality and sleep apnea. Air
travel is particularly problematic because airplanes are not pressurized to sea level and the
ambient oxygen level can fall as much as 25 mm Hg. Assess oxygen needs prior to air travel.
• Cardio-pulmonary Rehabilitation and Nutritional Management
Cardio-pulmonary rehabilitation is helpful for those patients with reduced exercise tolerance and
restricted activity because of dyspnea. Nutritional screening is recommended because weight
loss and muscle wasting contribute to disability and mortality. Nutritional supplementation,
exercise, and anabolic agents may be effective in reversing this complication.
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• Other Medical Therapies. Patients with known coronary artery disease should be treated with
aspirin and a statin to lower the low-density lipoprotein (LDL) to 70 mg/dl if possible. Calcium
channel antagonists have not been proven to be significantly beneficial in heart failure patients.
Short-acting calcium channel antagonists such as nifedipine are contraindicated because they
increase mortality, elevate neurohormones, and worsen heart failure. Dihydropyridines such as
amlodipine and felodipine have a neutral effect on heart failure and may be useful for treating
concomitant hypertension or angina pectoris. Warfarin therapy is recommended in patients with
atrial arrhythmias, left ventricular thrombi, or left ventricular aneurysms. The INR should be
monitored closely during significant changes in clinical status and medication regimen. Many
drugs may interfere with warfarin anticoagulation, eg amiodarone may increase the
anticoagulant effect. Specific therapies for treating atrial fibrillation, sleep apnea, anemia,
obesity, and thyroid diseases may improve the symptoms and functional limitations of CHF.
Intravenous Inotropes
Chronic use of intravenous inotropes (>48-72 hours infusion) is associated with ventricular
arrhythmias, high mortality rates, and ischemic episodes. Chronic infusions are used for palliative
symptom relief or for patients with an internal cardioverter defibrillator (ICD) awaiting heart
transplantation. Intermittent infusions allow patients with CHF exacerbations to leave the hospital
earlier, and can also improve heart failure symptoms from 200-490 days after treatment. The
physician, patient, and family should discuss and decide on this intervention based on the possible
benefits and risks (arrhythmia, sudden cardiac death, infection, and the risk of becoming
dependent to and unable to wean inotropic therapy. Opioids, sedatives, oxygen, and other
symptom control measures can be used if the patient and the family decide to forgo a trial of IV
inotropes.
• Dobutamine and Dopamine. Dobutamine and dopamine improve cardiac contractility by
stimulating beta-1 adrenergic receptors. Dopamine also causes renal and mesenteric
vasodilation at lower doses (dopaminergic effect), and vasoconstriction at higher doses (alpha
adrenergic effect). Intravenous infusions may be useful in selected patients with acute
exacerbations of hypotensive heart failure or shock. The dose of should always be titrated to
the lowest dose compatible with hemodynamic stability in order to minimize adverse events.
Dobutamine or Dopamine can start at 2 - 5 mcg/kg/min, titarated by 1 – 4 mcg/kg/min at 10 – 30
minute intervals until optimal response is attained (maximum of 40 mcg/kg/min). If doses above
30 mcg/kg/min are needed, then more direct acting inotropes (e.g. norepinephrine, epinephrine)
can be used. Monitor VS closely- hypertension, arrhythmia (eg PVCs), and tachycardia may
occur.
• Milrinone. Milrinone is a selective phosphodiesterase inhibitor that increases intracellular cyclic
adenosine monophosphate (cAMP) and enhances contractility. Milrinone is a systemic and
pulmonary vasodilator that used in patients with hypotensive, low output heart failure- especially
cases with pulmonary hypertension.
Electronic Therapies for Heart Failure

• Cardiac Resynchronization Therapy (CRT). May benefit patients with advanced heart failure,
and a wide QRS complex. CRT can improve symptoms, quality of life, and exercise capacity.
Optimal synchronization of atrial and ventricular contraction is achieved with echocardiographic
guidance. Cardiac resynchronization therapy may be considered in patients with NYHA Class 3-
4 heart failure with wide QRS (>120ms), usually LBBB, who remain symptomatic despite an
optimal medical regimen. Patients with dypsnea when performing ADLs, co-morbid problems
that limit activity, and 6 minute walk test of less than 300 meters may not benefit from CRT.
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• Defibrillator Therapy. Sudden death occurs in about half of the patients with heart failure. An
internal cardioverter defibrillator (ICD) may improve survival in certain patients and is superior to
anti-arrhythmic drug therapy in preventing sudden death. Indications for defibrillator therapy
include survivors of a cardiac arrest, patients with sustained ventricular tachycardia, inducible
ventricular tachycardia, and LVEF <30% following a myocardial infarction. An ICD may improve
survival in dilated cardiomyopathy and at least NYHA Class II.Cardiac resynchronization
therapy can be combined with an ICD as a single device if a patient meets criteria for both
devices, as often is the case. Implanted defibrillators may interfere with palliative care for
patients with end-stage heart failure; and consideration should be given to turning off these
devices after suitable discussion with the patient and family. They may prolong or even add to
the discomfort these patients experience as they approach the end of life.
Surgical Therapies for Heart Failure

• Left Ventricular Assist Devices (LVAD). LVAD is used for certain patients with cardiogenic
shock unresponsive to intra-aortic balloon counterpulsation and intravenous inotrope therapy.
Although LVADs improves survival in advanced heart failure, they are also associated with high
mortality and morbidity (infection, bleeding stroke risk are increased 2x). LVADs are best used
as a bridge to cardiac transplantation, and are seldom used as a palliative care intervention.
• Ventricular Reconstruction Surgery. Ventricular reconstruction surgery, also called ventricular
remodeling surgery, is performed for heart failure secondary to ischemic cardiomyopathy. It
consists of several components: coronary artery bypass grafting, mitral and tricuspid valve
repair, resection of left ventricular scar or aneurysm, reshaping the left ventricle from a spherical
to an elliptical shape, and epicardial left ventricular pacing lead placement.
• Cardiac Transplantation. Cardiac transplantation is reserved for otherwise healthy patients with
end-stage congestive heart failure with severely impaired function despite optimal medical
therapy. Patients are excluded for transplantation if they have chronic medical co-morbidities,
pulmonary hypertension, active infection, psychosocial contraindications, or medical non-
compliance. Following cardiac transplantation, patients are subjected to lifelong
immunosuppression to prevent rejection that renders them susceptible to various opportunistic
infections and malignancies.
Management of Acute CHF Decompansation and Acute Pulmonary Edema

• Oxygen therapy
• Nitroglycerin, IV or other route (can administer sublingual or spray while IV access being
obtained), titrate to BP (use with caution if inferior/right ventricular infarction suspected);
• Intravenous loop diuretic Furosemide (A: 20-80 mg C: 0.5-1.5 mg/kg IV qd-tid; patients already
on outpatient dose may require more) or, Bumetanide (A: 0.5-1 mg C: 0.02 mg/kg IV qd-tid; 1
mg of Bumetanide is roughly equivalent to 40 mg Furosemide)
• Morphine Sulfate (A: 2-4 mg C: 0.04- 0.08 mg/kg IV as needed for pain or dyspnea). Be careful
if inferior wall MI suspected or if hypotensive or presence of tenuous airway
• ACE Inhibitor or ARBs
• Cardiovascular support medications—including Dobutamine, Dopamine, Nitroprusside
• Thrombolytic therapy or revascularization for AMI if still indicated.
• Airway management—invasive and noninvasive
• Correction of underlying etiology—valve repair, etc.
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Pointers in CHF Management:
• For low blood pressures: If the patient is symptomatic or if SBP<90 mmHg, then decrease the
dose of diuretics. If unable to decrease diuretics further, then adjust the timing of medications
that can lower the BP (e.g. take them separately at different times of the day). If still
symptomatic or SBP<90 mmHg, then gradually decrease the dose of the beta blocker, ACE-I,
ARB, vasodilator, and/or other medications. If the SBP is 90mmHg or greater, and if the patient
is asymptomatic (no lightheadedness, severe fatigue, etc) and the BUN and Crea levels are
acceptable, then continue the medication regimen and monitor closely for any symptoms and/or
further decrease in BP.
• Avoid NSAIDs and COX2 inhibitors in patients with congestive heart failure if possible; they may
worsen kidney function, interfere with other medications, and cause fluid retention.
• If the patient has a cough while on an ACE-I, first rule out other causes – including fluid
congestion. Change to an ARB if cough persists.
• If azotemia develops while on ACE-I, first look for and correct other precipitating factors
(decrease diuretics for hypovolemia). If azotemia persists, decrease or stop the medication; rule
out renal artery stenosis.
• Never assume that lack of rales or x-ray evidence of edema means left-sided failure is not
present
• Elderly patients can and often do present atypically without classic signs and symptoms such as
increasing dyspnea, orthopnea, and PND.
• Patients presenting with heart failure are ischemic or infarcting until proven otherwise
• Consider diastolic heart failure, valvular heart disease, ischemic and hypertensive heart
disease, in patients with symptoms of heart failure, but with a normal left ventricular ejection
fraction.
• Avoid aggressive diuresis if inferior/right ventricular infarction suspected
• Avoid nitroglycerin if inferior/right ventricular infarction suspected
• If patients are not on what is deemed standard therapy, find out why and discuss management
issues with their primary care physician.
• Watch for hyperkalemia in patients on increasing doses of, or on combinations of an ACE-I,
ARB , Aldactone, TMP-SMX, NSAIDs, and heparin. Check if the patient is taking any potassium
containing supplements or salt substitute. Correct hypovolemia. Consider decreasing the K-
sparing diuretics. In patients with kidney failure, avoid or be careful with K-sparing diuretics and
use lower doses of ACE-I and/or ARBs.
• Patients receiving beta-blocker therapy may need dose reduction or discontinuance if clinically
significant decompensation develops. Increase diuretics, and slow the titration of the beta
blocker if the HF symptoms worsen. Decompensation on beta-blocker therapy many times
warrants a temporary increase in diuretic dose.
• If the beta blocker causes bronchospasms, decrease the dose, or consider a cardioselective
agent. Discontinue if bronchospasms persist.
• Always ascertain history of high sodium intake or medication noncompliance
• Consider thromboembolic disease in patients who present with a history of a large myocardial
infarction and reduced ejection fraction
• Some patients with heart failure may need to have pre-renal indices (ie higher BUN, Crea) in
order to prevent congestive symptoms
• The precipitating factors and causes for heart failure should be determined if possible
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Palliative Care
Congestive heart failure (CHF), even with aggressive treatment, ultimately progresses and
becomes a debilitating, terminal illness. Palliative care should be considered for those patients with
recurrent, persistent or refractory symptoms and problems. Symptom management, pyschosocial
management, counseling, and discussions about goals and treatment preferences become
increasingly important as CHF worsens. Patients will ultimately become refractory to standard
therapy and experience severe symptoms. Issues about quality of life (QOL) or survival are
important when discussing goals and treatment preferences. Site of treatment must be discussed-
patients may prefer home treatment of an acute illness if the outcomes are equivalent to those of
hospitalization. Some general recommendations concerning diet and medications may become
inappropriate as the patient and family reevaluates the goals of care. Patients may choose to take
more diuretic therapy to manage symptoms and disregard sodium restrictions. Drugs such as beta-
blockers and invasive procedures such as an Automated Cardioverter Defibrillater (AICD) can
improve survival but may not necessarily improve QOL.
Symptoms such as pain, nausea, dyspnea, and fatigue very prevalent at the end of life. Many
patients suffer severe dyspnea a few days before death. Better symptom management is crucial to
help relieve suffering.
Dyspnea
• Dyspnea is a common symptom throughout all phases of CHF. Standard therapy such as ACE
inhibitor use can relieve dyspnea by decreasing pulmonary edema through afterload reduction,
while diuretics can reduce fluid retention. Anxiety can precipitate dyspnea and should be
treated. Oxygen therapy can improve hypoxia and reduce the work of breathing, and it may
decrease the perception of dyspnea by the flow of gas over the nasal mucosa. A 6 minute walk
with pulse oximetry can assess for exercise induced hypoxia that requires intermittent home
oxygen use during exertion.
• Opiods and Sedatives. As heart failure progresses, whether or not the patient also has terminal
cancer, opioids should be used for palliation of dyspnea, pain, and other symptoms relieved by
opioids. Morphine is the opioid that is most commonly used, but other agents such as
oxycodone, fentanyl, and methadone can also provide good relief. The benefits of opioids in
CHF are: 1) subjective improvement in breathlessness results from opioid action on midbrain
centers that trigger the sensation of dyspnea in response to hypoxemia; 2) lower vasomotor
tone in the large veins, increasing capacitance and decreasing preload, therefore relieving
congestive symptoms. Oral administration is effective in most cases, starting at low doses and
titrating upward until dyspnea is relieved. A nightly dose of morphine can ease nocturnal
dypnea. Slow-release preparations can then be used every 12 hours. If CHF has become
refractory to ACE inhibitors and high-dose diuretics, opioid doses may be increased and the
route of administration changed to rectal or parenteral if necessary. Benzodiazepines are
helpful in relieving anxiety associated with dyspnea. When using opioids or benzodiazepines to
control dyspnea, initial doses should be low and titration slow to prevent suppression of
respiratory drive. During the terminal phase, sedatives such as barbiturates or benzodiazepines
should be added for severe terminal dyspnea or agitation.
Sleep Disorder
• A nightly dose of morphine can ease nocturnal dypnea. For night sedation, consider zolpidem,
or low doses of midazolam, estazolam, or haloperidol. Obstructive Sleep Apnea (OSA) is
common in patients with heart failure. Suspect OSA for persistent paroxysmal nocturnal
dyspnea, orthopnea, or daytime fatigue despite the absence of fluid retention and congestion on
examination. Continuous positive airway pressure (CPAP) can reduce left ventricle afterload,
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improve oxygenation and decrease waking episodes during the night, which results in less
daytime sleepiness and fatigue.
Pain
• Due to high rates of comorbid conditions such as DM and arthritis, individuals with end-stage
CHF can experience chronic pain.
• Nonsteroidal anti-inflammatory drugs can be problematic if anticoagulation is still considered
beneficial and is being used, and/or if kidney function is compromised. NSAIDs are generally
avoided, since they can worsen kidney function and promote fluid retention.
• Opioids such as morphine have valuable analgesic, sedative, and hemodynamic properties and
can be administered in various forms. Route required, dosing schedules, and ability of the
administering person should be considered when choosing an analgesic agent.
• Angina. 50 to 70 % of patients with advanced heart failure have coronary artery disease. Angina
can limit activity, and reduce the quality of life. Anti-anginal medications, such as nitrates and
beta-blockers, should be optimized. Avoid non-dihydropyridine Ca channel blockers due to their
negative inotropic effects. Manage precipitating causes, such as anemia, hypovolemia and
dehydration, emotional stress, and hypoxia. If angina is refractory to medical management, then
percutaneous (or sometimes surgical) revascularization can be done for those with a suitable
coronary anatomy. If standard anti-anginal thrapies and interventions are not effective, then low
dose opioids, such as morphine, can be used for pain relief.
Anorexia, Nausea and Constipation
• Nausea can be caused by obstruction from liver and gastric congestion, ascites, or constipation,
as well as by medication interactions. Reassess the drug regimen. Check for reversible causes
such as digoxin toxicity or intolerance to certain drugs, and treatment must be tailored to the
identified cause. Consider small frequent meals, and an antiemetic such as metoclopramide.
• For anorexia, appetite stimulants, and nutritional supplementation if needed.
• Constipation may be due to various causes and co-morbidities. When managing constipation,
laxatives with high salt contents, such as magnesium salts and fleet enemas should be avoided.
Dizziness and Lightheadedness
• Dizziness and lightheadednesss can be due to postural hypotension, dehydration (e.g.
decreased fluid intake, diuretics, vomiting), muscle wasting and poor venous tone, co-existing
disease such as cerebrovascular infufficiency, and other causes.
• Modify the drug dose and/or regimen if the patient is experiencing moderate to severe drug
induced hypotension due to vasodilators, diuretics, and/or other drugs.
Fatigue and Weakness
• Fatigue and weakness limit function and QOL. Fatigue and weakness should be evaluated for
other possible cause/s and exacerbating factors such as depression, anemia, malnutrition.
• Hb > 12 g/dL is associated with less inpatient deaths. Anemia can be managed by iron
supplementation, blood transfusion, and erythropoietin.
• Manage malnutrition, anorexia, and cachexia. Nutritional management, nutritional monitoring,
and the use of multivitamin and mineral supplements may be helpful.
Functional Decline
• Reaasess the patient’s drug regimen, diet and caloric intake.
• Consider simple exercises that are appropriate for the patient. Home exercise programs, such
as strength and endurance training, and progressive home walking exercise programs, can be
beneficial.
• Home assessment focuses on safety, energy conservation, work simplification, and functional
activity. Home safety evaluations identify hazards such as cords across walkways, lighting
deficiencies, unsafe placement of furniture, and the need for an emergency exit plan. Consider
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assistive devices, including grab bars, handrails, and nonslip tub strips. Environmental
interventions such as the addition of ramps, lowering of cabinets, and removal of throw rugs
also decrease risk of accidental falls and increase functional independence.
• Patient education on work simplification and energy-saving includes: saving trips by gathering
supplies before beginning a task, eliminating steps to a task such as drying dishes, organizing
storage areas so most items are located at midbody range, using good body mechanics, and
using breathing techniques. Safe transfers, accomplishing tasks such as cooking and cleaning,
personal care (bathing and dressing), functional strength, gait, and balance can all be
evaluated.
Edema and Fluid Retention
• General measures include: raising the legs via foot stool or recliner whenever possible if out of
bed, salt restriction and fluid restriction.
• Loop diuretics, and combination of diuretics for severe cases (e.g. furosemide or bumetanide +
metolazone).
• Monitor electrolytes and renal function regularly when adjusting the diuretic regimen.
• If patients with advanced heart failure and kidney failure become resistant to high doses of
diuretics, other therapies that can be used are: inpatient or outpatient parenteral diuretics,
peritoneal dialysis especially in patients with limited vascular access, and inpatient
extracorporeal ultrafiltration.
Palpitations and Arrhythmias
• Atrial fibrillation is present in 40% of patients with advanced heart failure. AV nodal suppression
and rate control prevents CHF exacerbation. Digoxin, beta-blockers, and amiodarone are
usually used. Cardioversion and rhythm control should be attempted if appropriate. Avoid non-
dihydropyridine Ca channel blockers due to their negative inotropic effects. Counadin is used, if
there are no contraindications, due to the high incidence of embolic stroke. AV nodal ablation
and pacemaker implantation can be used if the rate cannot be controlled medically.
• Sinus node dysfunction is usually managed with a permanent pacemaker to optimize heart rate
control.
• Ventricular arrhythmias can be managed with amiodarone, and/or a beta-blocker if the patient
does not have fluid congestion. The Implantable cardioverter defibrillator (ICD) improves
survival. Patients should be warned about appropriate and inappropriate ICD discharges.
Appropriate education and determination of patient preferences should be done. During the last
hours of life, as the patient enters the terminal phase, and after deciding with the patient’s
family, the ICD may need to be deactivated to prevent the prolongation of the dying process.
Cognitive Impairment
• The risk of cognitive impairment for persons with CHF is 2 times greater than in those without
CHF. This makes self-care more difficult.
• Modify the care and treatment plan to accommodate for physical and cognitive deficits
(medication lists, medication boxes, etc).
• Screening for cognitive decline is useful since this impairment can impact health care decision
making.
Coping and Adjustment Problems
• Coping with advanced CHF can be difficult. Patients and families may need to deal with
depression, uncertainty regarding prognosis, loss due to decline in physical status, hostility, and
anger. Late-stage CHF is associated with adjustment and coping difficulties and problems that
need to be addressed.
• Interventions can include expressive and supportive counseling, family counseling, discussing
patient and family preferences, and social support groups.
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Depression, Grief, and Anxiety
• Individuals with late-stage CHF are confronted with many end-of-life psychological issues such
as depression, anxiety, and grief. Expressive supportive counseling and other psychosocial
interventions are usually helpful. For moderate to severe cases, drug therapy may be needed.
• Signs of the dying process, such as weight loss and social withdrawal, may mask end-of-life
depression. Patients at risk of depression during the terminal phase are those with poor pain
management and a history of depression. Depression is associated with worsening functional
decline, and increased morbidity and mortality. Tricyclic antidepressants can prolong the QT
interval, and may lead to torsades de pointes and sudden death. SSRIs are generally safe and
effective in most patients. Treatment should be tailored according to expected length of life, risk
of threatening cardiac interactions with therapy, and willingness to tolerate other side effects.
• Anxiety can be associated with fear of dying. Medical treatment should aim to relieve symptoms
without undue sedation.
• Patients and families may experience overwhelming feelings of loss, and grief that may benefit
from counseling.
Family / Caregiver Stress
• Worsening CHF can be difficult and stressful for family members and caregivers.
• Care includes personal care, meal preparation and feeding, ambulation and transfers,
supervision, treatments, and may involve role alterations.
• Discharge preparations must include family and caregiver education and provision for home
health aides or volunteer assistants if needed.
Predicting Prognosis
• Predicting timing of death can be difficult for CHF. Deaths can result from stroke, myocardial
infarction, arrhythmia, or infection. Most individuals will continue functional decline and become
resistant to increasing doses of medical therapy, with their cause of death resulting from
progressive hemodynamic decline.
Continuous Assistance
• CHF exacerbations can be unpredictable, and palliative care interventions may be urgently
needed at any time to control distressing symptoms and other problems. If palliative care is not
available during off hours, patients and families may be forced to use the emergency room or
request hospital admission, for problems that can be easily managed with continuous 24 hr
palliative care services.
• Community based palliative care programs can even offer “crisis kits” that contain prepackaged
medications such as diuretics, anxiolytics, morphine, sublingual nitroglycerin, and antibiotics.
Patients and family members must be trained on appropriate use of these kits to ensure safety.
Advanced Respiratory Diseases
Non-malignant respiratory diseases are leading causes of morbidity and mortality worldwide. Non-
malignant end-stage respiratory diseases include TB related diseases, HIV related diseases,
chronic obstructive pulmonary disease (COPD), pulmonary vascular disease, cystic fibrosis,
pneumoconiosis, sarcoidosis, and others. Respiratory failure is the inability of the respiratory
system to maintain adequate oxygenation and/or clear carbon dioxide. End-stage respiratory
diseases are associated with various symptoms and problems such as dyspnea, cough, increased
sputum production and secretions, fever, infection, hemoptysis, stridor, acute obstruction, chest
pain, anorexia, constipation, sleep disorder, and depression.
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The most common chronic, progressive respiratory disease that requires palliation is chronic
obstructive pulmonary disease (COPD). COPD is characterized by airflow limitation that is not
completely reversible, usually progressive, and is associated with an abnormal inflammatory
response of the lungs to noxious particles or gases -- primarily caused by cigarette smoking.
Asthma is different from COPD. The airflow obstruction is predominantly reversible, and the
airways of asthmatics are markedly hyperresponsive to a variety of specific (aeroallergens) and
nonspecific (methacholine, histamine, cold air) inhaled substances. But many patients with severe
asthma, even nonsmokers, develop poorly reversible airway obstruction and become
indistinguishable from patients with COPD.
Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality in the
world. Severe COPD has a five-year mortality of about 50%. For COPD patients who require
mechanical ventilation, one-year mortality is 60%. Many patients with severe COPD have worse
mortality than do those with stage I lung cancer. A classification of COPD severity using the degree
of airflow obstruction, based on FEV1, is a useful predictor of health status and longevity. Other
measures include body mass index, degree of dyspnea, and exercise capacity measured by the 6-
minute walk test. These parameters, when combined, have been shown to predict a higher risk of
death than lung function alone.
Classification of Chronic Obstructive Pulmonary Disease

Severity Description FEV1 % pred
At risk* Postbronchodilator FEV1/FVC > 0.7 >/= 80
Mild COPD smoker’s cough, little or no dyspnea >/= 80
Moderate COPD cough, dypnea on moderate exertion 50-80
Severe COPD Cough, wheeze, dyspnea on mild exertion 30-50
Very severe COPD cough, wheeze, dyspnea at rest < 30
FEV1 = forced expiratory volume in 1 second; FVC = forced vital capacity; COPD = chronic
obstructive pulmonary disease
*Patients who smoke or have exposure to pollutants, have cough, sputum, or dyspnea
Patients with advanced respiratory diseases need appropriate palliative care. For these patients,
both quality of life and survival is poor. Psychosocial problems and functional impairment are
common. Four out of five patients with severe COPD are so out of breath that they cannot climb a
flight of stairs, or even just to walk outside of their home. Many patients may find gardening,
shopping, and socializing difficult. Half of patients experience sleeping problems which leads to
further stress and anxiety. Many patients feel that their condition is not taken seriously enough and
that they lacked social support. Sometimes, patients (and even some physicians) wrongly assume
that their prognosis is better, and are relieved to learn that they have chronic lung disease such as
bronchitis or emphysema, rather than cancer. Better communication and counseling is needed,
possibly including discussions on advance directives and end-of-life care. While treatment with
bronchodilators and steroids may partially relieve symptoms and oxygen therapy may prolong life,
for many patients the course of the disease is one of unavoidable decline: a life of disabling
dyspnea and increasingly frequent hospital admission reflecting deteriorating lung function usually
leading to death. Severe COPD that requires home oxygen therapy has poor survival figures that
are worse than many common cancers.
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Advance planning, should considered for all cases of advanced respiratory disease; and especially
for patients who have been intubated and attached to a mechanical ventilator in the past and who
want to avoid this treatment in the future. Advance directives can prevent unwanted aggressive
measures that are often reflexively provided by paramedics and emergency personnel to patients
with exacerbations. Counseling and reassurance are provided through careful explanations of the
effects of opioids and sedatives to relieve dyspnea and anxiety, thus facilitating a relatively
comfortable end of life.
Management
All symptomatic patients require drug treatment. The inhaled route is preferred. Although there is
no drug therapy that can significantly alter the decline in lung function over time, improved
symptoms, a reduction in exacerbations and hospitalizations, better exercise capacity, and an
overall improvement in health status may be achieved with current therapies.
Bronchodilators
• There are three types of bronchodilators commonly used: beta agonists, anticholinergic agents,
and methylxanthines. All 3 types cause smooth muscle bronchodilatation. They also improve
lung emptying during tidal breathing, leading to increased inspiratory capacity and reduced
residual volume and dynamic lung hyperinflation during exercise, resulting in relief of dyspnea.
Patients, particularly those receiving beta agonists and theophylline, should be monitored for
worsening symptoms of anxiety, sleep problems, palpitations, tremors, and other side-effects.
• Inhaled beta-2 adrenergic receptor agonists such as salbutamol (or albuterol). Unlike asthma
patients who demonstrate significant response, COPD patients either show no such response
or do so only at high doses. These agents are absorbed systemically, causing vasodilation of
both peripheral and pulmonary beds through beta-2 receptors on vascular smooth muscle.
Pulmonary vasodilation can result in ventilation-perfusion mismatch in advanced COPD, with
resulting decrease in PO2 after beta-agonist inhalation.
• Inhaled anticholinergic agents such as ipratropium bromide produce greater bronchodilation in
COPD than that seen with beta-2 agonists. The sensitivity of the adrenergic system decreases
with age, necessitating the use of increasing doses of beta agonist, whereas no such age-
related decrement in responsiveness is seen in the cholinergic system's response to
ipratropium. Ipratropium is poorly absorbed after inhalation and only few cardiovascular or
atropine-like side effects are seen. Ipratropium can be given by a metered-dose inhaler or, if a
mucolytic effect is desired, by a nebulizer with saline.
• Theophylline in both asthma and COPD produces minimal bronchodilation but places patients
at significant risk for toxicity. It may have an adjunctive role in patients who have persistent
major airflow obstruction with maximal use of inhaled bronchodilators. The dose should be
conservative, with a target serum level of 5 to 10 mg/L, since most of the bronchodilator effect
occurs in this range.
Corticosteroids
• Inhaled corticosteroids can improve postbronchodilator FEV1 and bronchial reactivity in stable
COPD. In more advanced disease, it can improve the number of exacerbations per year and
the overall health status of the patient.
• Combining medications of different classes such as long-acting beta agonists and inhaled
corticosteroids can improve lung function as well as symptoms. The greatest effects on health
status and exacerbation rates are seen in those with an FEV1 of less than 50% predicted.
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Oxygen therapy
• Oxygen therapy is recommended for patients with hypoxemia. In patients with COPD and cor
pulmonale, long-term 24-hour oxygen increases life expectancy by six to seven years, although
this benefit may be reduced in patients who continue to smoke.
• Oxygen relieves the discomfort and anxiety of dyspnea associated with hypoxemia and should
be offered to any dyspneic patient with oxygen saturation below 88% to 90%. The therapeutic
target is an oxygen saturation greater than 90% during rest, sleep, and exertion. Patients may
be hypoxemic during physical exertion and exercise. Oxygen augments exertional and exercise
capacity in patients with exertional or exertional hypoxemia.
• Many patients have nocturnal hypoxemia that is due to the disease and not just sleep apnea.
Sleep quality is often impaired; patients should be asked about sleep quality and sleep apnea.
• Air travel may be problematic for the COPD patient because airplanes are not pressurized to
sea level and the ambient oxygen level can fall as much as 25 mm Hg. Evaluate oxygen needs
before air travel.
Pulmonary rehabilitation
• Pulmonary rehabilitation is helpful for those patients with reduced exercise tolerance and
restricted activity because of dyspnea. Interventions should be tailored to the individual patient.
Pulmonary rehabilitation results in improvement in health status and healthcare utilization.
Nutritional Management
• Nutritional screening is recommended because weight loss and muscle wasting contribute to
disability and mortality in advanced respiratory disease. Nutritional supplementation, exercise,
and anabolic agents may be effective in reversing this complication. Aspiration precautions
should be instituted if indicated.
Immunization
• Patients may benefit from pneumococcal and influenza vaccinations.
Chest Physiotherapy
• Postural drainage in a 25 degree head down position, chest clapping / percussion / vibration,
humidification, and mucolytics help clear secretions and sputum. A forced expiratory technique
(forced exhalation at mid-lung volume, or ‘huffing’) clears the small airways. A controlled cough
(a deep breath followed by 2-3 consecutive coughs) helps with sputum expectoration.
Controlled Breathing Techniques
• Pursed lip breathing keeps the airways open and improves ventilation and gas exchange. Slow
expirations also help control anxiety. A bending forward posture and/or a gentle external
pressure on the upper abdomen, increase abdominal pressure, and may improve diaphragmatic
function, and relieve dyspnea.
Opioids
• As in advanced CHF, opioids provide dramatic relief of dyspnea in advanced respiratory
disease. Opioids started at low doses and increased cautiously have little tendency to cause
CO2 retention unless the patient has accompanying neuromuscular disease such as
amyotrophic lateral sclerosis. As a general rule, patients on opioids who can be awakened and
are able to converse meaningfully are not oversedated.
• Even "weak" opioids such as codeine or hydrocodone, available in cough suppressants, can
exert a beneficial effect on dyspnea. However, it is preferable in cases of severe shortness of
breath to administer “strong” oipoids, such as morphine or oxycodone every four hours as an
oral solution or in the form of tablets, starting at a dose of (A: 2.5 to 5 mg, C: 0.05 - 0.1 mg/kg)
for morphine or approximately half that for oxycodone. If dyspnea returns prior to the next dose,
it is usually better to increase the dose rather than decrease the dosage interval to avoid
frequent administrations. The dose may be increased every one or two days until dyspnea is
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relieved. Occasionally, high doses are required but are often well tolerated if the increase is
gradual. Once the dose is stabilized, slow-release preparations can be substituted every 12 hrs.
• Nebulized opioids (e.g. morphine) can be helpful, particularly if the patient knows how to use of
a nebulizer; but initial doses have to be monitored for side-effects such as bronchospasm and
worsening of dyspnea. Consider prophylactic laxatives when using opioids.
Benzodiazepines and Anxiolytics
• Dyspnea that is not completely relieved by opioids, especially if accompanied and/or
aggravated by anxiety, may be relieved by a low dose benzodiazepine, such as lorazepam and
midazolam. Diazepam can also be used but care should be taken to avoid accumulation due to
its long half-life.
Mucolytics
• Using mucolytics for problems due to increased secretions and sputum production, can improve
symptoms and decrease exacerbations.
• Other measures that improve expectoration or decrease secretions include steam inhalation or
nebulized normal or hypertonic saline, steroids, anticholinergics, beta 2 agonists, and
theophylline.
Surgery
• Advanced respiratory disease is not an absolute contraindication to surgery. However, it must
be recognized that the patient carries a several-fold increased risk of postoperative
complications such as atelectasis, pneumonia, and respiratory failure. Surgery that is adjacent
to the diaphragm carries the greatest risk.
• Preoperative smoking cessation decreases the complication rate. Early mobilization, incentive
spirometry, and adequate pain control can also decrease complication rate.
• Surgery for COPD includes bullectomy, lung volume reduction surgery, and lung
transplantation.
Management of Acute Exacerbations

An exacerbation is characterized by an increase in the patient's daily symptoms of dyspnea, cough,
and/or sputum beyond normal day-to-day variability and severe enough to require a change in
management. The same medications used in stable patients are used for the acute exacerbation
except that there is a role for systemic corticosteroids.
During a severe exacerbation, monitor the patient for hypoxemia, hypercarbia, and respiratory
acidosis. Keep the arterial PaO2 > 60 mm Hg (arterial saturation > 90%) in order to prevent tissue
hypoxia and preserve tissue cellular oxygenation. Increasing oxygen blood levels higher will confer
little added benefit and may increase the risk of CO2 retention. If respiratory acidosis occurs,
because of oxygen, bronchospasm, respiratory muscle fatigue, severe dynamic hyperinflation,
retained secretions, or worsening infection, noninvasive or invasive mechanical ventilation may be
necessary.
• Oxygen. Patients should receive the necessary amount of oxygen to maintain an oxygen
saturation just above 90%. It is important to remember that PaCO2 may increase secondary to
oxygen use, but that this effect might not be as severe as previously thought.
• Bronchodilator agents. Anticholinergic agents, combined with short acting beta-agonists are the
preferred bronchodilators. The mode of delivery for the bronchodilators might depend on
several issues (ie, staff availability and costs) but the evidence suggests similar benefit of MDIs
when compared with nebulized treatment. If MDIs are to be used, spacer devices are
recommended.
• Steroids. Steroids improve several outcomes during an acute COPD exacerbation. The optimal
dose and duration of therapy is not well established, but a 10- to 14-day tapering course of is
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appropriate. Parenteral administration of high doses of methylprednisolone was used during the
first few days of therapy in most of the trials.
• Antibiotics. Use of antibiotics seems to benefit patients with acute COPD exacerbation and
improve several outcomes (ie, lung function and decrease in treatment failure rates). Patients
with severe COPD or documented purulent sputum might benefit the most from antibiotic
treatment compared with patients with clear sputum. Severe COPD patients with very low FEV1
(< 35% predicted) may be at an increased risk of infection by Pseudomonas aeruginosa or
Haemophilus influenzae. The latter seems to be increased in active smokers also. Several
studies still recommend the use of traditional antibiotics (ie, amoxicillin and co-trimoxazole), but
new bacterial strains that include antibiotic-resistant bacteria, might require newer and more
potent antibiotics (ie, fluoroquinolones).
• Mucolytic agents and chestphysiotherapy. The current evidence does not suggest a role for
these interventions in the acute setting. They may still be used in particular patients after
adequately evaluating the specific reasons for their use.
• NIPPV. This intervention benefits patients with a rapid decline in respiratory function and gas
exchange. It may decrease the need for intubation and invasive mechanical ventilation, and it
may even decrease mortality. The physician should be aware of the contraindications for this
intervention and know when the patient may need invasive mechanical ventilation.
Kidney Failure
Chronic Kidney Disease (CKD) is the gradual, progressive, and irreversible loss of renal function.
The most common causes are: diabetes, hypertension, glomerulonephritis, cystic renal disease,
interstitial nephritis, and other urological diseases. Clinical presentations range from the nearly
asymptomatic patient with mild laboratory abnormal findings to the patient with fulminant
pulmonary edema or cardiac arrest. CKD doubles the risk of mortality.
In end stage renal disease (ESRD), the kidneys can no longer sustain life without dialysis or renal
transplantion. Many organ systems are affected. Uremic syndrome involves multisystemic
processes and complications due to the accumulation of nitrogenous wastes and metabolic by-
products. Symptoms of ESRD may range from fluid overload and congestive heart failure to
encephalopathy and coma. Dialysis can be life-saving but can also cause complications. ESRD
has a very poor prognosis, with patients having a 4 times greater rate of hospitalizations and a life
expectancy that is one quarter to one fifth less than that of the general population. The most
common cause of death is cardiovascular disease. Risk of death from cardiovascular causes is 20
times greater than in the general population. Patients have a survival rate that's worse than some
patients with cancer.
Palliative care should ideally start when patients start dialysis, or even earlier. Regarding the
difficult issue of when to withdraw a patient from dialysis, patients may be withdrawn for a number
of reasons, including unacceptable quality of life, acute complication, dementia, stroke, or cancer. If
the patient’s condition begins to worsen, and/or if the discontinuation of dialysis therapy is being
considered, then the patient should be referred for hospice and palliative care.
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Laboratory Test Normal Values
Creatinine 0.6 - 1.3 mg/dL
BUN 8 - 20 mg/dL
CrCl Men 97-137 mL/minute
Women 88-128 mL/minute
BUN and Creatinine

Azotemia is a state of excess urea or other nitrogenous products in the blood. BUN is the end
product of protein metabolism that is excreted by the kidneys. BUN can be affected by the amount
of protein intake, catabolism state, and dehydration. Creatinine is the end product of muscle
metabolism that is primarily excreted through the glomerulus at a fairly constant rate. Normal BUN-
Creatinine ratio is 10:1. If this ratio is > 20:1, suspect prerenal azotemia. The BUN can be
significantly elevated, compared with a normal or slightly elevated creatinine level- common causes
include congestive heart failure and volume depletion. In chronic renal failure, the BUN and
creatinine levels are both elevated, but the 10:1 ratio is usually maintained.
Creatinine Clearance
The CrCl is an important measure of kidney function. It is used to monitor kidney function
throughout the course of CKD. The CrCl reflects the GFR, and the terms are often used
interchangeably. CrCl is measured by 24-hour urine collection. It is considered the gold standard to
document the status of renal function. However, this test is often inaccurately obtained in the
outpatient setting. The second method is estimating the CrCl with standard equations such as the
Cockroft-Gault formula.
CrCl (ml/min) = [ ( 140 – age ) x weight (kg) ] / ( 72 x serum creatinine (mg/dL))
( multiply result by 0.85 for females)
For Children and Adolescents use the Schwartz Formula:

GFR (ml/min/1.73 m2) = K x height (cm) / serum creatinine (mg/dL)
(K = 0.45 if weight < 10 kg; 0.55 if weight is 10-70 kg; 0.7 if weight > 70 kg)
Proteinuria
The presence of proteinuria usually means that glomeruli are affected and have lost their semi-
permeable selectivity. The amount of protein excreted is directly related to the severity and rate of
progression to kidney failure. Normal protein excretion is less than 150 mg/day. Nephrotic
syndrome involves severe proteinuria -- more than 3 g of protein in 24 hours. Other symptoms are
edema, hypercoagulability, and hyperlipidemia. Nephrotic syndrome has a variety of causes, such
as diabetes and glomerular diseases. Progression to renal failure is seen most often when
proteinuria is in the nephrotic range.
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Stages of CKD
Description Stage CKD GFR
Nomenclature (mL/min/1.73 m2)
Proteinuria 1 Kidney Damage >/= 90
Chronic 2 Mild GFR 60-89
Renal
3 Moderate GFR 30-59
Insufficiency
4 Severe GFR 15-29
ESRD 5 Kidney Failure < 15 or on renal
replacement therapy
Management of CKD
Acute (Potentially Reversible) Kidney Insufficiency vs Chronic Kidney Disease

• Identify and manage potentially reversible causes of a newly diagnosed deterioration of kidney
function, or an acute deterioration of function in a patient with underlying CKD.
• History, physical examination, and basic laboratory tests can help determine reversible
functional deterioration. A kidney ultrasound is used to help determine chronicity, and to look for
underlying causes.
Symptom Management
• Common symptoms of late stage CKD include: anorexia, nausea, vomiting, fatigue, weakness,
pruritus, edema, dyspnea, dizziness, hiccups, pain, and muscle cramps. (refer to chapters on
pain and non-pain symptom management)
Anemia
• Anemia is mainly due to erythropoietin deficiency. Iron deficiency, blood loss, and vitamin B12
and folic acid deficiency are possible contributing factors. Symptoms include fatigue, decreased
exercise tolerance, difficulty sleeping, nausea, and headache. Anemia may result in
cardiovascular disease (left ventricular hypertrophy), reduced quality of life, cognitive
abnormalities, altered menstrual cycle, sleep abnormalities, and weakness and malaise.
• Perform an adequate anemia evaluation. Evaluate for other causes.
• Ideal target for hematocrit of 33% to 36%; hemoglobin 11-12 g/dL. The physician must decide
what level is appropriate for each patient based on various factors such as goals of care (eg
prevent complications of anemia, relieve symptoms, and improve functional capacity), and
resource and financial limitations. Higher hemoglobin levels may be necessary for symptomatic
patients, patients with significant coronary artery disease to prevent angina, andf other
significant cardiac or pulmonary problems.
• Iron management: Iron supplementation; keep ferritin > 100 ng/mL, Tsat > 20%
• Consider Erythropoietin administration: 75-150 U/kg subcutaneously, 2-3 times per week. (See
Section on Hematologic Problems)
Protect Remaining Renal Function
• Avoid prerenal azotemia by preventing and managing dehydration.
• Treat urinary tract infections promptly.
• Avoid interventions and medications that can worsen kidney function.
• Relieve urinary obstruction if possible.
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Immunization
• Recommend annual flu vaccine.
• Administer pneumococcal and/or hepatitis B vaccine, if needed.
Prevent Cardiovascular and Cerebrovascular Problems
• Cardiovascular and cerebrovascular complications worsen the patient’s quality of life, and
account for 15-30% of deaths. Common complications are hypertension, congestive heart
failure (CHF) or pulmonary edema, myocardial ischemia, pericardial disease, arrhythmias, and
stroke. CKD may coexist with other risk factors (eg diabetes, hypertension, and hyperlipidemia).
• Stop smoking, reduce alcohol intake, and begin an exercise program. Reduce low-density
lipoprotein (LDL) and triglycerides. Treat the hypertension. Encourage daily aspirin.
• Higher homocysteine levels are associated with endothelial dysfunction, oxidative damage, and
thrombosis. B vitamins including folate may reduce homocysteine levels. Hypoalbuminemia and
the chronic inflammatory state of CKD accelerate atherosclerosis. Control the phosphorus level
to decrease vascular calcifications.
Congestive Heart Failure and Pulmonary Edema.
• Identy and manage various contributing factors including volume overload, cardiac ischemia,
dysrhythmia, hypertensive emergency, and medication/dialysis noncompliance.
• First insure hemodynamic stability. Cardiogenic shock may require infusion of vasopressor
agents and inotropes such as dopamine and/or dobutamine. If anemia is causing high-output
failure or contributing to myocardial ischemia, consider blood transfusion (monitor closely to
avoid volume overload).
• Avoid volume overload. Closely monitor clinically for signs of volume overload. Central venous
pressure monitoring may be considered- if appropriate.
• Hemodialysis or peritoneal dialyses are the preferred methods of removing excess volume. If
dialysis is not immediately available, pharmacotherapy should be used as a temporizing
measure. Safe and effective agents immediately available include nitroglycerin, morphine
sulfate, and loop diuretics (eg furosemide, bumetanide).These agents act by reducing cardiac
preload through venodilation.
Nitroglycerin (A: 0.4 mg SL q 5 can be given initially and followed by an IV drip started at 5
mcg/min, may increase by 5-10 mcg/min, q3-5 min., max 200 mcg/min. C: 0.25-0.5 mcg/kg/min,
may increase by 0.5-1 mcg/kg/min q3-5 min prn, max 20 mcg/kg/min) titrated to effect while
avoiding hypotension.
Morphine (A: 10-30 mg PO, 2-10 mg IV/IM/SC. C: 0.2-0.5mg/kg/dose PO, 0.1-0.2 mg/kg/dose
IV/IM/SC, q2-6 hours) decreases preload and decreases patient anxiety. Monitor closely for
respiratory depression.
Furosemide (A: 80-120 mg, C: 0.5-2 mg/kg/dose, PO/IV/IM, q6-12 hours) can cause
venodilation but diuresis may be limited in anuric ESRD. Bumetanide (PO/IV/IM, 1 mg=40 mg of
furosemide)
Other agents include nitroprusside and sorbitol. Nitroprusside started at 0.3 mcg/kg/min, max
10 mcg/kg/min, acts as both a preload and afterload reducer; sorbitol given orally or rectally
promotes an osmotic shift between the vascular space and the gut. Its late onset of action (1-6
hours) and copious diarrhea may make management difficult.
Arrhysrhythmias
• Know the patient’s advance directives; and resuscitation preferences. Follow current
recommended arrhythmia and ischemia management guidelines- when apropriate.
• If cardiac arrest exists, hyperkalemia should be suspected and calcium chloride (A:10-20 mL of
10% calcium chloride, C: 20 mg/kg/dose, IV) or calcium gluconate (A: 15-20 mL of 10%
calcium gluconate, C: 200-500 mg/kg/day divided q6 hours) should be given over 10-15
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minutes. For IV push, do not exceed 100 mg/min. Avoid calcium if digitalis toxicity is suspected,
as it may worsen dysrhythmia. Avoid bretylium.
• If ischemia is suspected, standard ischemia guidelines should be used.
Cardiac Ischemia
• Know the patient’s advance directives; and resuscitation preferences. If appropriate, follow
current recommended management guidelines; there is no significant difference in the
management of myocardial infarction and ischemia in patients suffering from chronic renal
failure and ESRD. Aspirin, nitrates, heparin, and thrombolytics should be used.
• Underlying anemia impairs oxygen delivery; transfusion with packed RBC may be needed.
• Avoid or be careful with dialysis during an acute episode.
Pericardial Disease
• If the patient is hemodynamically stable, identify and manage exacerbating factors such as
trauma, infection, dialysis non-compliance, and medications. For pain or fever, paracetamol,
steroids and opioids may be used for relief once other sources of fever and chest pain have
been ruled out. NSAIDs for pain and fever should be used very carefully to avoid complications.
Dialysis may need to be started or the current regimen may need to be intensified.
• If the patient is hemodynamically unstable, consider pericardiocentesis. Potential complications
are myocardial laceration, dysrhythmia, iatrogenic tamponade and hepatic laceration.
• If the patient is mildly unstable but responds to volume expansion with saline or mannitol,
consider surgical consultation for possible pericardiotomy or pericardiectomy.
Hyperlipidemia
• Hyperlipidemia is a result of decreased catabolism of lipoproteins. Decreased plasma oncotic
pressure and urinary loss of protein stimulates the liver to synthesize lipoproteins.
• Follow current lipid management guidelines: Target LDL < 100 mg/dL in diabetic patients, and
LDL < 120 mg/dL in nondiabetic patients with renal disease.
Arterial Blood Pressure and Hypertension
• Hypertension is a major cause and a consequence of CKD. Sodium excretion is decreased,
leading to sodium accumulation, and volume overload. The renin-aldosterone system is
stimulated in CKD, causing angiotensin-II mediated vasoconstriction. Sympathetic nervous
system activity is increased. Hypertension may gradually worsen and require multiple
medications to control. Target organ damage, due to hypertension, is common.
• Follow current related hypertension management guidelines: Target BP < 130/80 mm/Hg for
nonproteinuric patients (< 1 g/24 h urine protein excretion); BP < 120/80 mm/Hg for proteinuric
patients (> 1 g/24 h urine protein excretion)
• In hypertensive emergencies, reduce the blood pressure in a rapid and controlled fashion.
Reduce the blood pressure by 20-30%. For adults, reduce to a level of 160/100 mmHg in the
first 24 hours. If a cerebrovascular accident is suspected, drastic reduction should be avoided
and a mean arterial pressure (MAP) maintained at a level of 120-160 mmHg to insure adequate
cerebral perfusion.If signs of hypertensive crisis or significant end organ damage exist,
nitroprusside IV at an initial dose of 0.3 mcg/kg/min is the drug of choice. It is an alpha- and
beta-adrenergic blocker and reduces both cardiac preload and afterload. Avoid potential
thiocynate toxicity by limiting infusion to less than 48 hours, initiating early dialysis, and
maintaining levels between 5 and 10 mg/dL. Nitroglycerin may be used and is a safe and
effective venodilator. If immediate intravenous access is unavailable, nitroglycerin can be given
sublingually every five minutes x 3 with blood pressure checked frequently.
Subsequently, nitroglycerin can be infused intravenously (A: 5 mcg/min, may increase by 5-10
mcg/min, q3-5 min., max 200 mcg/min. C: 0.25-0.5 mcg/kg/min, may increase by 0.5-1
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mcg/kg/min q3-5 min prn, max 20 mcg/kg/min). Other agents include combination alpha- and
beta-blockers (IV labetalol), diuretics, IV ACE inhibitors, and calcium-channel blockers.
Albumin and Protein Malnutrition
• Hypoalbuminemia is caused by several factors. Identify and manage potentially controllable
causes. Spontaneous dietary protein reduction results from the anorexia. Other causes are
proteinuria, abnormal energy metabolism, decreased protein production, and increased protein
degradation. Hypoalbuminemia indicates a poor prognosis.
• Nutritional assessment: serial weights, albumin, transferrin
• Adjust diet individually according to individual clinical status. Dietary counselling.
• Be careful with mineral supplements; CKD patients cannot handle the magnesium well.
• A multiple vitamin supplement is usually indicated. B vitamins including folate may reduce
homocysteine levels.
• Avoid herbal products or supplements that may be nephrotoxic.
• Sodium: A low-salt diet can delay the progression of CKD in these salt-sensitive individuals.
This is especially important for the elderly.
• Iron: If the patient has iron deficiency, evaluate for possible causes including gastrointestinal
blood loss. Provide iron replacement therapy.
• Protein: A low-protein diet is controversial. Many CKD patients already have protein
malnutrition. Assess daily protein intake and serum albumin levels. Avoid a high-protein diet.
When the CrCl is below 25 mL/min, consider protein restriction of 0.6-0.75 g protein/kg/day.
Consultation with a dietitian is very helpful if protein restriction is being considered.
• Phosphorus restriction may be needed as the disease progresses to prevent
hyperphosphatemia, hypocalcemia, and resulting hyperparathyroidism. Phosphorus is found in
meat and dairy products. Medications to bind phosphorus may be needed.
• Potassium restriction may needed in the late stages of CKD.
Antiangiotensin Therapy
• Angiotensin-converting enzyme inhibitors (ACE-Is) and angiotensin-II-receptor blockers (ARBs)
are first-line treatment for patients with diabetes, heart failure, hyperlipidemia, or proteinuria.
They slow progression of CKD and protect the kidneys by lowering the blood pressure and by
decreasing glomerular pressure, thus reducing proteinuria.
• Use ACE inhibitor or ARB for all diabetic and nondiabetic patients; unless they are
contraindicated and/or the patient cannot toleratre them.
• Make sure the patient is not dehydrated before starting and while on an ACE-I/ARB. Monitor
potassium and creatinine levels. Assess for side effects, especially cough and angioedema.
Acute renal failure can occur in patients with renovascular disease, particularly in renal artery
stenosis.
• Maximize angiotensin blockade in patients with proteinuric renal disease
Diabetes and Hyperglycemia
• Tight glucose control (Hemoglobin A1c at least < 7.0) will delay the progression of CKD.
Acidosis
• Acidosis worsens hyperkalemia, hypoalbuminemia (by decreasing protein synthesis), and
calcium loss from bone.
• Manage with Na bicarbonate as long as the patient can tolerate the additional sodium load-
which can cause fluid overload and worsen hypertension.
Electrolyte Abnormalities
• Electrolyte abnormalities occur in chronic renal failure. Hyperkalemia, hypercalcemia, and
hypermagnesemia can result in clinical worsening if not treated. These conditions can occur
due to dietary indiscretion and dialysis noncompliance.
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• Hyperkalemia. Causes of hyperkalemia include pharmacological agents, dietary and dialysis
noncompliance, rhabdomyolysis, metabolic acidosis, and catabolic states. Medications that
produce hyperkalemia include: nonselective beta blockers, calcium channel blockers,
succinylcholine, and digoxin if taken in toxic doses.Tissue breakdown from rhabdomyolysis
results in release of intracellular potassium. Extracellular potassium shifts occur with metabolic
acidosis. Target serum K+ level < 5.5 mEq/L. Clinical presentation can range from cardiac arrest
to mild constitutional symptoms, a high index of suspicion for this problem should be maintained
in any problematic patient with ESRD. Although most patients are asymptomatic, the most
common complaint is weakness. The most important consequence of hyperkalemia is
increased cardiac irritability; consider obtaining an ECG.
The immediate goal in hyperkalemia is to ensure cardiac stability. Administer 10% calcium
chloride or 10% calcium gluconate. Give immediately to patients in cardiac arrest or to patients
exhibiting signs of dysrhythmia. Agents that help translocate extracellular potassium should be
administered. These include beta-agonists, IV insulin, and sodium bicarbonate. Beta-agonists
and insulin act by stimulating the cellular Na+K+ ATPase pump to translocate extracellular
potassium.
Nebulized albuterol (A: 10-20 mg in NS C: 5-10 mg in NS) can lower potassium by as much as
1.0 mmol/L. Regular insulin IV (A: 10-20 U along with 50 cc of D50W. C: 0.1 U/kg with D25W at 2
ml/kg or 0.5 g/kg, over 30 minutes, may be repeated in 30-60 minutes) can lower potassium
levels by 0.6-1.0 mmol/L over one hour. Hypoglycemia is a potential side effect, and initial
therapy should be followed by IV D5W. The role of sodium bicarbonate is controversial. Dose is
A: 50 mEq. C: 1-2 mEq/kg, IV over 5-10 minutes. The ideal means of potassium removal is
dialysis, but availability limits its use. Sodium polystyrene sulfate can be given either orally or
rectally and exchanges potassium for sodium using the gastrointestinal tract. Sodium
Polystyrene Sulfonate (A: 25 g in sorbitol PO, or 50 g in sorbitol PR. C: 0.5-1g/kg in sorbitol, q6
hours), removes 0.5-1.0 mmol of potassium for every gram of sodium polystyrene resin. Sodium
overload can result from treatment, so close monitoring is required.
Dialysis is indicated for K > 7 mmol/L.
• Hypercalcemia and Hypermagnesemia. Hypercalcemia and hypermagnesemia by
themselves, or with hyperkalemia, can increase cardiac irritability and cause cardiac
dysrhythmias. They may occur due to the inadvertent use of common medications—phosphate
binders, vitamin D analogues, and calcium supplements in hypercalcemia, and magnesium-
containing antacids and lithium therapy in hypermagnesemia. Patients often present with a
variety of clinical complaints that range from weakness and malaise to cardiopulmonary
instability and coma.
• Hypercalcemia is often asymptomatic but clinical signs may occur once the level exceeds 11.5
mg/dL. Presentation may include nausea, vomiting, fatigue, muscle weakness, seizure,
polyuria, polydypsia, and abdominal pain. Mental status changes, such as lack of concentration,
irritability, confusion, and coma may also occur. Most physical findings are nonspecific. Unlike
patients with normal renal function, fluids and diuretics may not be as effective in the treatment
of hypercalcemic patients with ESRD. Those with levels between 11.5 and 15 mg/dL can often
await timely dialysis; levels greater than 15 mg/dL require emergent treatment. Consider IV
fluids if the patient’s volume is depleted, calcitonin, and prompt dialysis. Although the effects of
steroids are delayed, their use should be considered.
• Hypermagnesemia inhibits the presynaptic release of acetylcholine and norepinephrine. Side
effects involve neural tissue, vascular smooth muscle and cardiac tissue. Nausea and vomiting
can occur at levels of 4-5 mEq/L (2.0-2.5 mmol/L), loss of deep tendon reflexes and mental
status changes occur at levels of 4-7 mEq/L (2.0-3.5 mmol/L), and respiratory paralysis occurs
at levels of 10-15 mEq/L (5.0-7.5 mmol/L). Other signs include hypotension, lethargy, and
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paralysis. Ensure respiratory stabilization, cardiac stability, and magnesium elimination.
Mechanical ventilation may be required for respiratory depression. 10 mL of 10% calcium
chloride or calcium gluconate IV should be given for cardiac instability and may be repeated
twice every 5-20 minutes. Elimination is best achieved through hemodialysis.
Renal Bone Disease, Hyperphosphatemia, and Hyperparathyroidism
• Alterations in calcium and phosphorus regulation can occur with a CrCl of 30-60 mL/min. In
kidney failure, phosphorus is retained. Elevated serum phosphorus (normal range is 2.4- 4.7
mg/dL) promotes calcium excretion. The kidneys also cannot convert vitamin D to its
metabolically active form, Vitamin D-125. This can lead to a decreased absorption of calcium
from the gastrointestinal tract. Chronic hypocalcemia stimulates the release of PTH, which
causes bone to release calcium, and leads to renal osteodystrophy.
• Monitor calcium, phosphorous, parathyroid hormone (PTH).
• Hyperphosphatemia is managed by dietary restriction, phosphate binders, and calcium
carbonate.
• Hyperparathyroidism is managed by dietary management, phosphate binders, Vit D, and
maintaining normal Ca levels.
• Maintain normal calcium levels of 9-11mg/dL. Vitamin D supplementation may be needed for
sustained hypocalcemia with normal phosphorus levels and/or elevated PTH levels.
• Target PTH 150-200 pg/mL
• Keep the calcium/phosphate product less than 55 mg2/dL2 and phosphorus less than 5.0
mg/dL. Normalize the phosphorus and give a phosphorus binder to take with meals. Phosphate
binders that are commonly used are calcium carbonate; calcium acetate (less calcium is
absorbed). Aluminum hydroxide may be used for short-term treatment but is not recommended
for chronic therapy. Most phosphate binders also cause constipation, so a stool softener should
be added.
Acute Neurologic Complications
• Complications range from neuropathies and the restless leg syndrome to lethargy and coma.
Distinguish between acute, chronic, and potentially life-threatening disorders. Etiologies such as
infection, CVA, uremic encephalopathy, hypoxia, subdural hematoma, and drug intoxication,
should be considered.
Altered Mental Status
• Several conditions can cause mental-status change in patients. Common conditions include
stroke, medication effects, and hypoglycemia. Complications from the dialysis process
(hypotension, the disequilibrium syndrome, dysrhythmia, and spontaneous CNS hemorrhage)
must also be considered.
• Acute onset may indicate cerebrovascular accidents, trauma, or dysrhythmias. A slow onset
and dialysis noncompliance may indicate uremic encephalopathy.
Infectious Complications.
• Infection is common. Patients are immunocompromised, and may have indwelling peritoneal or
vascular access devices that serve as ports of entry for infectious agents.Conditions that cause
immunosuppression are chronic uremia, malnutrition, iron overload from transfusion, and
electrolyte disorders.
• The patient should be viewed as an immunocompromised host. Fever requires a thorough
evaluation. Patients may present with fever, chills, hypothermia, joint pain, constitutional
complaints, and symptoms referable to the site of infection.
• Common sites of infection include the lung, urinary tract, vascular access sites, and the
peritoneum. Vascular access sites and peritoneal catheters are common sources of infection in
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patients undergoing hemodialysis and peritoneal dialysis, respectively. Specific treatment
regimens are based on likely foci of infection and the patient’s underlying renal function.
• Urinary tract and bronchopulmonary infections are common. Bladder stasis, dysmotility, and
underlying structural disease increase the risk if UTI. Symptoms of dysuria and frequency may
be absent because of decreased urinary flow.
• Obtain cultures and start broad spectrum antibiotic coverage empirically in unstable septic
patients. The regimen should provide coverage for the gram-positive and gram-negative
organisms that commonly infect this population. Therapy is based on probable pathogens, local
resistance patterns, and any previous culture results.
Spontaneous Hemorrhage
• Stabilize hemodynamically. Resuscitation includes direct pressure, establishing large-bore IV
access, and infusion of crystalloid and/or packed red blood cells.
• Prevent further hemorrhage. If compression is required at the catheter site, avoid excessive
pressure to prevent occlusion. Persistent bleeding may indicate an aneurysm or
pseudoaneurysm. Tourniquet use above the vascular catheter should be used only for severe
persistent hemorrhage.
• Correction of suspected coagulopathy. If heparin is a suspected cause in major bleeding, give
protamine 0.5 mg/100 units of heparin IV/SC is given (max dose=50mg IV, max infusion rate= 5
mg/min, max IV concentration=10mg/ml). To correct platelet dysfunction consider, DDAVP,
Desmopressin Acetate, 0.3 mcg/kg in 50 cc of NS IV or 3 mcg/kg nasally, or subcutaneous
dose of 0.4 mcg/kg. Cryoprecipitate can also be administered.
• Dialysis can help correct the bleeding, but use may be limited by lack of immediate availability.
Dialysis
• Common indications for dialysis include:
-- a calculated GFR or creatinine clearance < 10-25 mL/min
-- uncontrolled fluid overload resulting in severe hypertension, pulmonary edema, and CHF
-- severe azotemia, BUN > 100-120 mg/ dL; or lower levels which are rapidly rising
-- symptomatic uremia: encephalopathy, pericarditis, GI bleeding
-- hyperkalemia (K > 6.5 mmol/L) that is non-responsive to pharmacological measures
-- severe metabolic acidosis (bicarbonate <12 mmol/L)
-- persistent hypocalcemia and secondary seizures.
• Standard Hemodialysis Procedure
-- Duration of 2 hours or more if needed, or until BUN is 30 percent improved; Blood flow rate of
A: 200 ml/min C: 3 ml/kg/min
-- Using an appropriate dialysis solution (eg bicarbnonate dialysis solution)
-- Do an initial fluid ultrafiltration (fluid removal during dialysis) for volume overload, pulmonary
edema, or pulmonary congestion. Fluid should be removed at a constant rate.
-- Anticoagulation: Heparin (A: Give 2000 units, then 1000 units/hr infusion into the arterial line;
C: Give 40 units/kg, then 20 units/kg/hr into the arterial line); or use low molecular weight
heparin (eg Enoxaparin: 1 mg/kg infused into the arterial line is good for 4 hours; if high risk for
bleeding, then reduce to 0.5 mg/kg for double vascular access, and 0.75 mg/kg for single
vascular access); or heparin rinse of the dialyzer using 1 liter NSS with 3000 units heparin, then
flush flush with unheparinized saline.
• Dialysis Disequilibrium Syndrome
A common complication usually occurs during or shortly after dialysis. Neurologic symptoms
include headache, weakness, restlessness, confusion, seizures, and coma. The syndrome
results when the removal of solutes from the blood is too rapid to allow an equilibration between
332
the central nervous system and the rest of the body. The syndrome is a diagnosis of exclusion,
and other etiologies should be ruled out.
• Hypotension
A common complication usually occurs during or shortly after dialysis. Management may
include: Trendelenburg position, saline bolus throught he venous line, oxygen, and reduction of
the ultrafiltration rate.
• Muscle ctramps
Muscle cramps during dialysis is usually associated with hypotension and poor perfusion.
Management may include: saline bolus throught he venous line, oxygen, and reduction of the
ultrafiltration rate.
Kidney Transplant
• Discuss kidney transplantation with the patient and family, if ever it is a reasonable option. A
timely referral for transplant evaluation should be done, if the patient and family want to pursue
the possibility of transplantation.
• Assist and support the patient and family during the transplant evaluation process.
Advance Directives
• Patient education should begin at the time of diagnosis and continue throughout the course of
disease. Inform the patient of his or her prognosis and treatment options to make informed
decisions. Discuss advance directives early and review it when patient's condition changes.
Include hemodialysis, peritoneal dialysis and transplantation in the advance directives.
Avoidance of Nephrotoxic Drugs

• Counsel patients to avoid nephrotoxic drugs, including NSAIDs, and COX-2 inhibitors, minimize
exposure to contrast agents
• Adjust the dose of renal-cleared drugs as needed. Monitor the patient's over-the-counter drug
use. When the CrCl is less than 50 mL/min, adjust dosages of medications that are metabolized
or excreted by the kidney.
• Some medications that should be adjusted are beta-blockers, allopurinol, H2-receptor
antagonists, penicillins, cephalosporins, digoxin, morphine, and codeine. Examples of
medications that should be avoided, especially when the CrCl is less than 30 mL/min are
contrast dyes, aminoglycosides, cimetidine, colchicine, probenecid, metformin, acarbose, and
glyburide.
Drug Dosing
• Renal insufficiency can alter the pharmacokinetic parameters of a drug including oral
bioavailability, volume of distribution, drug binding to plasma proteins, and most importantly the
rates of metabolism and excretion, i.e., drug clearance. It is often necessary to adjust drug
dosage in proportion to the degree of renal insufficiency to minimize drug toxicity and maximize
therapeutic benefits
• A drug will most likely require dose adjustment in renal disease if: 1) a substantial fraction (>
40%) of the drug dose is excreted by the kidney either unchanged or as an active (or toxic)
metabolites, 2) the drug or its active metabolite has a narrow therapeutic window such that drug
accumulation cannot be tolerated, 3) the kidney is a major site for the inactivation of the drug,
and 4) there is a significant drop in the binding of the drug to plasma proteins (eg, a decrease in
the protein binding from 99 to 95% results in a fourfold rise in the unbound, active drug
concentration)
333
• Dose adjustment may involve one or a combination of the following measures: 1) extension of
the dosing interval, 2) reduction of the maintenance dose, 3) administration of a loading dose,
and 4) monitoring serum drug levels.
• Reduced elimination of a drug prolongs its half life (t 1/2) as well as the time required for the
serum level to reach a steady state (4 times t 1/2). Therefore, a loading dose should be given if
a therapeutic steady state needs to be reached rapidly.
• To maintain a therapeutic level and avoid drug accumulation and toxicity, reduce the size of the
maintenance dose or the dosing frequency or both. Reduction should be proportional to the
degree of renal impairment. Use the maintenance dose reduction method when a more
constant (less oscillating) serum drug level is therapeutically preferable (e.g., ß-lactam
antibiotics); and use the interval extension method is used for drugs for which a constant serum
level is either unnecessary (eg, vigabatrin) or undesirable (e.g., aminoglycoside antibiotics).
This method is also used for drugs that normally have long elimination t 1/2. A combination of
the two methods is often used. If serum drug level is routinely measured, dosage adjustment is
guided by monitoring the serum level and the patient's response to treatment and adverse drug
reactions (toxicity).
Examples of Dosage Adjustments for Patients with Renal Failure

(Aronoffet al, 2002; Chernow, 1995; Swan and Bennett, 1997)
Adjustment For Renal Failure (CLCR)*
Medication 10-50 ml/min <10 ml/min
Adjuvants
Amitriptyline 100% 100%
Carbamazepine 100% 75%—100%
Desipramine 100% 100%
Dexamethasone 100% 100%
Mexiletine 100% 50%—75%
Nortriptyline 100% 100%
Phenytoin 100% 100%
Prednisone 100% 100%
Gabapentin q 12—24 hr qod
Analgesics
Paracetamol/Acetaminophen q 6 hr q 8 hr
Codeine 75% 50%
Diclofenac 25%—50% 25%
Fentanyl 75%—100% 50%—75%
Ibuprofen 100% 100%
Ketorolac 50% 25%—50%
Methadone 100% 50%—75%
Morphine 75% 50%
Naproxen 100% 100%
Propoxyphene 100% Avoid
Acetylsalicylate q 4—6 hr Avoid
Sulindac 100% 100%
Tramadol 50% 25%
Antidepressants
Amoxapine 100% 100%
Bupropion 100% 100%
Fluoxetine 100% 100%
334
Sertraline 100% 100%
Antiemetics
Haloperidol 100% 100%
Granisetron 100% 100%
Metoclopramide 75% 50%
Ondansetron 100% 100%
Prochlorperazine 100% 100%
Antihistamines
Diphenhydramine q 6—12 hr Q 12—18 hr
Hydroxyzine 50% 50%
Anxiolytics
Alprazolam 100% 100%
Chlordiazepoxide 100% 50%
Clonazepam 100% 100%
Diazepam 100% 100%
Midazolam 100% 50%
Oxazepam 100% 100%
Bronchodilators
Albuterol/ Salbutamol 75% 50%
Terbutaline 50% Avoid
Theophylline 100% 100%
Diuretics
Bemetadine 100% 100%
Furosemide 100% 100%
Spironolactone q 12—24 hours dosing Avoid
Thiazides 100% Avoid
Triamterene q 12 hours dosing Avoid
Gastrointestinal
Ranitidine 75% 50%
Famotidine 25%—50% 10%—25%
Omeprazole 100% 100%
Ranitidine 50% 25%
Sucralfate Avoid Avoid
Hypoglycemic Agents
Acarbose Avoid Avoid
Glipizide 50% 50%
Glyburide 100% 100%
Insulin 75% 50%
Inotropic Agents
Dobutamine 100% 100%
Milrinone 100% 50%—75%
Digoxin 25%—75% 10%—25%
Sedative/Hypnotics
Flurazepam 100% 100%
Phenobarbital q 8—12 hr q 12—16 hr
Temazepam 100% 100%
Triazolam 100% 100%
Antimicrobials
Acyclovir q 12—24 hr q 48 hr
335
Amikacin q 12—18 q 24—48 hr
Ampicillin q 6—12 hr q 12—16 hr
Aztreonam 50%—75% 25%—33%
Cefixime 75%—100% 50%
Cefotaxime q 8—12 hr q 12—24 hr
Ceftazidime q 12—24 q 24—48 hr
Cephalexin q 6—8 hr q 8—12 hr
Fluconazole 25%—50% 25%
Ganciclovir 50% q 12 hr 25% q 24 hr
Gentamicin q 12 hr q 24 hr
Imipenem 50% 25%
Metronidazole q 8—12 hr q 12—24 hr
Piperacillin-Tazobactam 70% q 6—8 hr 70% q 8 hr
Ticarcillin q 12—24 hr q 24—48 hr
Tobramycin q 12 hr q 24 hr
Trimethoprim- q 18 hr q 24 hr
Sulfamethoxazole
Neuroleptics
Haloperidol 100% 100%
Chlorpromazine 100% 100%
Others
Warfarin 100% 100%
Allopurinol 50% 10-25%
*Note – Dose Change: Percent values represent dose changes (eg 100% means no dose
adjustment is required; 75% means use 75% of the usual dose).
-- Interval Change: The suggested interval is indicated (eg q 12-24 hr means give the
usual dose every 12-24 hrs).
-- Combined Dose and Interval Change: shown by a combination of percentage values
and dose intervals (eg 75% q12-24% means give 75% of the usual dose at every 12-24 hrs).
-- Analgesics: Morphine is metabolised in the liver to morphine-6-glucuronide which has
half the sedative effect and a prolonged half life. Fentanyl and alfentanil can be used normally.
Benzodiazepines can be used in renal failure. NSAIDs decrease renal blood flow and may
precipitate complete renal failure. Impaired renal function results in a decreased excretion of
tramadol and its active metabolite M1. All patients with creatine clearance less than 30 ml/min,
the dosing interval of tramadol should be increased to 12 hours with a maximum daily dose of
200 mg. Only 7% of an administered dose is removed by hemodialysis, dialysis patients can
receive their regular dose on the day of dialysis.
End-of-Life Symptom Management

• Pain: Manage according to standard palliative pain management guidelines (see chapter on
pain). Morphine is effective and commonly used; but it also leads to build up of neuroactive
metabolites – which may or may not be a significant concern depending on the situation.
Fentanyl or hydromorphone present no metabolism issues, but can be more expensive.
Meperidine should be avoided.
• Myoclonic Jerks: Treat with benzodiazepines, e.g. Lorazepam, Diazepam.
• Hunger and Thirst: Allow full diet if desired and if with no clear contraindications to certain food
or drinks. Standard aspiration precautions as indicated.
• Dyspnea: Opioids, oxygen (if needed); diuretic, dialysis for pulmonary edema.
• Excessive Secretions: Anticholinergic agents, e.g. hyocine, scopolamine, glycopyrrolate.
336
Liver Failure
The early symptoms of liver disease, such as fatigue and pruritus, are nonspecific. Physical
findings of scleral icterus, spider angiomata, palmar erythema, dilated abdominal veins, and
splenomegaly generally indicate relatively advanced cirrhosis with portal hypertension. More
severe or advanced liver disease may show jaundice or onset of complications. Many cases of
chronic liver disease are detected by abnormalities noted on routine blood tests of liver enzymes,
including aspartate aminotransferase (AST, formerly SGOT), alanine aminotransferase (ALT,
formerly SGPT), and alkaline phosphatase.
Major complications of liver failure include: ascites, hepatorenal syndrome (HRS), spontaneous
bacterial peritonitis (SBP; a potentially lethal infection of the ascitic fluid that occurs in the absence
of a local source of infection), sepsis, variceal hemorrhage, and hepatic encephalopathy. Without
liver transplantation, many patients with severe liver failure- especially those with rising bilirubin,
vitamin K resistant bleeding problem, or ascites that is refractory to diuretics- may die within 1-2
years. Although liver transplantation may increase the long term survival rate by as much as 70-
90%, many patients still die because: a donor is not available, they have contraindications to liver
transplantation, the procedure is not available, or they cannot afford the cost of the procedure.
Common Causes of Cirrhosis

Disorder Test Treatment
Alcoholic liver disease GGT, MCV Abstinence
Hepatitis B HBsAg, HBV DNA Interferon alfa-2b
Lamivudine
Hepatitis C Anti-HCV, HCV RNA Interferon alfacon-1
Interferon alfa-2b plus
ribavirin
Hemochromatosis Ferritin, transferrin saturation, hepatic iron Phlebotomy
index, HFE gene
Autoimmune hepatitis ANA, ASMA Prednisone, azathioprine
Primary biliary cirrhosis AMA Ursodiol
Wilson's disease Ceruloplasmin D-penicillamine
AMA, antimitochondrial antibody; ANA, antinuclear antibody; anti-HCV, hepatitis C antibody;
ASMA, anti-smooth-muscle antibody; GGT, gamma-glutamyltranspeptidase; HBV DNA, hepatitis B
virus DNA; HCV RNA, hepatitis C virus RNA; HBsAg, hepatitis B surface antigen; MCV, mean
corpuscular volume
The prognosis of patients with uncomplicated cirrhosis and normal (or near-normal) liver function is
relatively good. However, once complications of ascites, variceal hemorrhage, or encephalopathy
have occurred, median survival is less than 5 years. Life expectancy and quality of life in patients
with advanced liver disease and cirrhosis is poor. Patients experience debilitating fatigue and
pruritus, disfiguring ascites, disabling encephalopathy, and catastrophic variceal hemorrhage,
anorexia and malnutrition. The patient may worsen rapidly after an infection, trauma, or surgery.
337
Cirrhosis is associated with a markedly increased risk of hepatocellular carcinoma. If the cause of
cirrhosis is viral hepatitis B or C, hemochromatosis, or ethanol use, the incidence of hepatocellular
carcinoma is about 2% to 4% per year. The benefit of screening for hepatocellular carcinoma
remains controversial. Patients may be screened for AFP at 3- to 6-month intervals and with an
imaging procedure at 6- to 12-month intervals (typically alternating ultrasound with MRI or CT).
When a lesion is identified, CT-guided biopsy is used to confirm the presence of hepatocellular
carcinoma. Even if no nodule can be identified, continued progressive increase in AFP to levels
higher than 500 ng/mL strongly indicates the presence of carcinoma.
Once a patient has been identified as having cirrhosis or having a chronic liver disease that is likely
to progress to cirrhosis, the possibility of liver transplantation should be considered. Even with
carefully selected patients, liver transplantation is associated with mortality of 10% to 20% at 1 year
and 20% to 50% at 5 years. Given the cost involved and scarcity of donor organs, transplantation
currently cannot be justified unless there is a high probability of a good long-term outcome.
Modified Child-Turcotte-Pugh (CTP) scoring system used by the United

Network for Organ Sharing (UNOS)*
Score 1 2 3
Prothrombin time (INR) <4 sec (<1.7) 4-6 sec (1.7-2.3) >6 sec (>2.3)
Bilirubin (mg/dL) <2 2-3 >3
Albumin (g/dL) >3.5 3.5-2.8 <2.8
Ascites Absent Mild Severe
Encephalopathy Absent Mild Severe
INR, international normalized ratio. *Each of five parameters is assigned a score from 1 to 3. The
sum of the five scores is the CTP score. A score of 6 or lower (Child's class A) is considered low
priority for liver transplantation, a score of 7 to 9 (Child's class B) indicates normal priority (UNOS
level 3), and a score of 10 or higher (Child's class C) is considered high priority (UNOS level 2).
Management
A 10-point (PORTAL VEIN) Approach to Management of Advanced Liver Disease

P rognosis. Assess pattern, activity, and severity of liver injury
O Rigin. Identify and treat underlying disorders
R ehabilitation. Treat alcohol and drug abuse
T riage. Evaluate for transplant
A scites. Manage fluid retention
L ifestyle. Maintain nutrition and general health
V ariceal bleeding. Anticipate and prevent hemorrhage
E ncephalopathy. Manage mental status
I nfection. Prevent disease through immunization and prophylaxis
N eoplasia. Screen for hepatocellular carcinoma
338
Nutrition and general health
Patients are often malnourished for many reasons (eg, ongoing ethanol use, chronic nausea,
anorexia, fat malabsorption, meal-induced abdominal discomfort, dietary protein restriction).
Malnutrition can lead to muscle wasting, hypoalbuminemia with worsening of ascites, neutropenia
with decreased resistance to bacterial infections, and weak cough leading to pneumonia.
Weakened connective tissue may predispose to variceal hemorrhage, umbilical hernia, and other
complications. Malnutrition also increases surgical risk. Provide for a proper diet. Consider sodium
restriction in patients with ascites. Routine supplementation with thiamine, folate, calcium, and a
therapeutic multivitamin is appropriate. Supplemental iron should be avoided or used cautiously
because excess absorption may contribute to liver injury. Formal nutritional support (enteral or
parenteral) may be needed in severely malnourished patients if surgery is required or if profound
hypoalbuminemia is contributing to refractory ascites. Dental care is important. Correct periodontal
disease that may lead to abscesses. Diabetes mellitus can occur in patients with hepatitis C or
hemochromatosis, and complicates care and worsens prognosis. Many patients smoke cigarettes,
which increases the risk for atherosclerotic disease and chronic lung disease, lung cancer, and
squamous cell cancers of the head, neck, and esophagus. Ongoing smoking is a relative
contraindication to transplantation. Patients should be strongly encouraged to quit smoking.
Alcoholism and Other Substance Abuse

Alcohol and other substance abuse complicates care of many patients with liver disease.
Alcoholism is a major cause of liver disease. Alcohol use, even in moderation, can aggravate other
causes of liver injury. In hepatitis C, heavy alcohol use increases the likelihood of progression to
cirrhosis by 15-fold. Intravenous drug abuse is a source of infections with hepatitis B, C, and D.
Ongoing addiction is associated with ongoing liver injury, risk of reinfection with hepatitis viruses,
and poor compliance with medical therapies. Patients with uncontrolled alcohol or drug addiction
often have difficulty handling the rigors of transplantation and post-transplantation
immunosuppression. Active substance abuse is a high-level contraindication to liver transplantation
in most programs. Patients with significant liver disease should be encouraged to abstain
completely from use of illicit drugs and alcohol. Formal programs for detoxification, counseling,
support, and monitoring are important.
Major Complications of Advanced Liver Disease
Ascites
Ascites is one of the more frequent complications of liver cirrhosis and will develop in
approximately 50% of patients with compensated cirrhosis who are followed for 10 years. If not
transplanted, 50% of patients with diuretic sensitive ascites die within 2 years, 50% of patients
diuretic resistant ascites in 6 months. Fluid <2 liters is difficult to detect clinically. Ultrasound or CT
can confirm fluid. It is associated with worsening nutritional status and quality of life.The
management involves careful monitoring of the pharmacologic treatment, electrolytes, fluid
balance, and weight. Treatment of ascites is based on a sodium-restriction diet and the progressive
use of diuretics, starting with spironolactone (A:100 mg C:2 mg qday) and furosemide (A: 40mg C:
1mg/kg qday), and increasing progressively every 3-5 days, if weight loss is inadequate, until a
maximum dosage of (A: 400 mg C: 200mg /24hr) of spironolactone and (A: 160 mg C:3-4mg/kg
/24hr) of furosemide is reached. Fluid restriction is not necessary in treating most patients with
cirrhosis and ascites. The chronic hyponatremia usually seen in patients is seldom problematic.
Rapid correction of hyponatremia with hypertonic saline can cause more complications than the
hyponatremia itself. Therapeutic paracentesis may be used for refractory ascites; use in patients
339
with diuretic-sensitive ascites is controversial. Administration of albumin at a dose of 4-8 g/L of
ascitic fluid removed has been strongly advised to prevent paracentesis-induced circulatory
dysfunction in large-volume paracentesis (> 5 L). Aquaretic drugs that enhance water excretion
are being studied. Both peritoneovenous shunts and externally draining implanted abdominal
catheters are possible options, but there is still no clear advantage over serial paracentesis.
Renal failure
Another significant complication in patients with cirrhosis and ascites is the development of renal
failure. There are 3 types of renal failure: prerenal failure when associated with a depletion of
intravascular volume; renal failure associated with infection not leading to HRS; and HRS.
HepatoRenal Syndrome (HRS) is a acute, progressive, oliguric, functional form of renal failure that
occurs in end-stage liver disease. Urine volume < 500 ml/day, Urine Na < 10 mmol/L. Prognosis is
very poor. Avoid nephrotoxic drugs. Consider empirical broad spectrum antibiotics while searching
for possible sepsis/infection. Dialysis is used while awaiting transplantation. The vasoconstrictor
terlipressin may be considered for patients with HRS in spite of its potential adverse effects,
namely ischemia of myocardium, gut, or digits. Evidence is still needed for definitive treatment
recommendations.
Spontaneous Bacterial Peritonitis (SBP) and Other Infections

The diagnosis of SBP in patients with cirrhosis requires an ascitic fluid polymorphonuclear cell
count > 200/mm3. Patients may be asymptomatic, or may have fever, abdominal pain,
nausea/vomiting, and mental status changes. The risk of SBP can be reduced through antibiotic
prophylaxis, either long term in patients with refractory ascites or short term in patients hospitalized
with variceal hemorrhage. Prophylactic regimens are norfloxacin 400 mg qday, trimethoprim-
sulfamethoxazole DS qday, or ciprofloxacin 750 mg qweek (adult doses). TMP-SMX is commonly
used for children, and quinolones for older children and adolescents. Once SBP is suspected
empirical antibiotics are started (eg IV cefotaxime A: 2g C: 50-70 mg/kg/dose q8hr; ceftriaxone A:
2g C: 50-75 mg/kg q24hr). Many bacterial infections are hospital-acquired, and patients
hospitalized for acute variceal hemorrhage or ascites are at particularly high risk of secondary
infection. The most common bacterial diseases are urinary tract infections, pneumonia, and
spontaneous bacterial peritonitis. Protect the airway to prevent aspiration. Intravenous ceftriaxone
may be more effective than oral norfloxacin in the prevention of bacterial infections in cirrhotic
patients with severe liver failure and upper gastrointestinal bleeding. Immunization is often
neglected in cirrhosis. Consider immunization for hepatitis A and B, pneumococcus, and influenza.
Varices
The management of portal hypertension in patients with advanced liver disease includes therapy to
prevent hemorrhage in patients who have never bled (primary prophylaxis), treatment for those
who are actively bleeding, and therapy for those who have previously bled (secondary
prophylaxis). In primary prophylaxis, after a screening endoscopy, if medium- or large-sized varices
are present, nonselective beta-blockers (ie, propranolol or nadolol) remain the treatments of
choice. The drug dose is increased until heart rate decreases by 25%, with a frequency between
50 and 60 beats/minute. Specific hemostatic treatments for variceal bleeding include vasoactive
drugs that decrease portal pressure, such as terlipressin or somatostatin, endoscopic band ligation,
and surgical portosystemic shunts or TIPS (transjugular intrahepatic portosystemic shunt).TIPS
relieves portal hypertension. As secondary prophylaxis, both beta-blockade and endoscopic band
ligation can be used. When possible, hepatic venous pressure gradient (HVPG) should be
monitored, with the goal of reduction to < 12 mmHg; otherwise, the goal of reducing heart rate by
25% is acceptable. HVPG helps predict the risk of variceal hemorrhage and provides valuable
340
prognostic information in the management of varices and portal hypertension.
Hepatic Encephalopathy
Hepatic encephalopathy is a complex neuropsychiatric syndrome due to liver failure, diagnosed
after exclusion of other causes. Subtle signs are seen in 70% of patients with cirrhosis. Symptoms
can be debilitating in many patients. Seen in 30% of patients dying of end-stage liver disease.
Blood ammonia level is makedly elevated in 90% of cases; but does not correlate well with course
of disease. MRI may show hyperintensity of the globus pallidus. CT and MRI of the brain also rules
out intracranial lesions.
Common precipitating factors are as follows: Renal failure (decreases clearance of urea,
ammonia, other nitrogenous compounds), Gastrointestinal bleeding (blood in the upper GI tract
increases ammonia and nitrogen absorption; bleed may lead to kidney hypoperfusion and
insufficiency; mild hemolysis with blood transfusion may increase ammonia levels), Infection (may
lead to kidney insufficiency and increased catabolism), Constipation (increases intestinal
production and absorption of ammonia), Medications (CNS drugs, eg opiates, benzodiazepines,
antidepressants, and antipsychotic agents, may worsen symptoms), Diuretics (hypokalemia and
alkalosis facilitates the conversion of NH4+ to NH3, kidney hypoperfusion), Dietary protein overload
(infrequent cause since most have poor intake).
Grading of the symptoms based on the West Haven classification system:
Stage 0 - Minimal hepatic encephalopathy. No detectable changes in personality or behavior.
Minimal changes in memory, concentration, intellectual function, and coordination. Asterixis is
absent.
Stage 1 - Mild lack of awareness and confusion. Shortened attention span. Slowing of ability to
perform mental tasks. Impaired addition or subtraction. Hypersomnia, insomnia, or sleep pattern
inversion. Euphoria, depression, or irritability. Asterixis is present.
Stage 2 – Drowsiness, lethargy or apathy. Slurred speech. Notable asterixis. Drowsiness, ,
personality changes, inappropriate behavior, gross deficits in ability to perform mental tasks, and
intermittent disorientation, usually regarding time.
Stage 3 - Somnolent but can be aroused, marked confusion, amnesia, unable to perform mental
tasks, disorientation about time and place, episodes of anger, incomprehensible speech.
Stage 4 - Coma with or without response to painful stimuli.
Therapy: Therapy is primarily based on supportive care and the treatment of common precipitating
factors, such as gastrointestinal bleeding, infections, renal and electrolyte disturbances,
psychoactive medications, volume depletion, constipation, excessive dietary protein intake, and the
presence of shunts (surgical or TIPS). Oral lactulose (A: 15-45ml C: 7.5-15ml TID-QID) is still the
first-line pharmacologic treatment, adjusted to achieve 2-3 bowel movements. About 90% of
patients respond to lactulose. If refractory to lactulose, consider neomycin (A: 0.5-1.5g C: 10-20
mg/kg/dose BID-TID), or metronidazole (A: 250-500 mg C: 5-10 mg/kg/dose TID). Consider
prophylactic proton pump agents, or H2 blockers. Consider branched chain amino acids (eg
Aminoleban A: 50 g C: 1 g/kg, PO, qd-tid). Consider loop diuretics (eg furosemide, bumetanide)
and K sparing diuretics (spironolactone) for edema and/or ascites- closely monitor for dehydration
or electrolyte problems. Consider prophylactic antibiotics such as Amoxicillin, Co-amoxiclav,
cephalosphorins, quinolones +/- metronidazole. Consider a beta blocker (eg propranolol), and/or
isosorbide dinitrate for portal hypertension- mildly helpful but can cause various adverse effects;
start with low doses and stop if adverse effects develop. L-ornithineL-aspartate and flumazenil are
being studied. In the terminally ill, hepatic encephalopathy usually results in a decrease in anxiety,
pain, and discomfort. The palliative care physician must determine whether treatment will be
beneficial or will just result in awareness of discomfort and suffering.
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Medications in Patients with Liver Disease
Certain medications may worsen complications of cirrhosis and are best avoided or used with
caution. Aminoglycosides can increase nephrotoxicity; angiotensin-converting enzyme inhibitors
can cause hypotension; nonsteroidal anti-inflammatory drugs cause renal sodium retention; and
sedative and narcotic agents may lead to hepatic encephalopathy. Drugs eliminated by the liver
must be used in low doses in patients who have cirrhosis, especially drugs that undergo high first-
pass hepatic clearance, since portosystemic shunting greatly increases their bioavailability.
Although patients with cirrhosis are probably no more susceptible to hepatotoxic drugs than other
people, the early signs of hepatotoxicity can be difficult to identify. The occurence of hepatotoxicity
superimposed on cirrhosis can be life-threatening.
Examples of Dosage Adjustments in Patients with Liver Disease

(Kubisty et al, 1995; Rodighiero, 1999)
Medication Hepatic Elimination Dosage Adjustment
Adjuvants
Carbamazepine >98% hepatic Decrease dose
Dexamethasone >97% hepatic Decrease dose
Phenytoin >95% hepatic Decrease dose in severe disease
Mexiletine 90% hepatic Decrease dose by 60—70%
Prednisone >85% hepatic None
Analgesics
Acetaminophen >95 hepatic Avoid chronic use*
Fentanyl 92% hepatic None
Ibuprofen >99% hepatic Decrease dose in severe disease*
Methadone 80% hepatic None or decrease*
Morphine 90% GI and hepatic Decrease dose or use a diff. opioid
Naproxen >90% hepatic Decrease dose in severe disease
Propoxyphene >95% GI and hepatic Decrease by 50%
Tramadol 90% renal; but metabolism Decrease by 50%
is reduced in liver failure
Antidepressants
Amitriptyline Primarily hepatic Use with caution
Fluoxetine Primarily hepatic Decrease by 50%
Nefazodone Primarily hepatic Decrease dose
Antiemetics
Metoclopramide 80% hepatic Decrease by 50%*
Ondansetron >95% hepatic Decrease freq. in severe disease
Antihistamine
Diphenhydramine >98% hepatic Decrease dose
Anxiolytics
Aiprazolam >90% hepatic Decrease by 50%
Chlordiazepoxide >99% hepatic Decrease*
Diazepam >97% hepatic Chronic, decrease dose*
Lorazepam >98% hepatic None
Midazolam >95% hepatic Decrease dose by 50%
Diuretics
Bumetanide 36% hepatic None
Furosemide 35% hepatic None
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Hydrochlorothiazide <10% hepatic None
Spironolactone >85% hepatic None
Gastrointestinal
Cimetidine 40% hepatic Decrease dose in severe disease*
Famotidine 30% hepatic None*
Omeprazole >90% hepatic Decrease dose by 50%
Ranitidine 30% hepatic None*
Sedative/Hypnotics
Temazepam >98% hepatic None
Other
Pamidronate 30% hepatic None
*In hepatic failure, choose an alternative agent.
Advanced Neurological Diseases
Patients with neurological diseases such as motor neurone disease, multiple sclerosis, Alzheimer’s
disease and other dementias, Huntington’s disease and Parkinson’s disease may benefit from
palliative care. These diseases are incurable and progressive. Goals of care include ensuring
adequate nutrition, communication, cardiac and respiratory functioning, bowel motility and skin
integrity, and adequate adjustment by the individual and family. The psychological and social
aspects of care are as important as physical care. Recovery of family members after death and
bereavement is important. The inability of physicians to alter disease progression is sometimes
interpreted to mean that nothing more can be done, but this is exactly the reason why we must try
our best to alleviate symptoms and give appropriate medical, psycholosocial, and spiritual support.
Although many physicians may use some elements of palliative care in the management of
patients with neurodegenerative diseases near the end of life, the provision for a more
comprehensive palliative care approach should not be delayed until the end stages of an illness.
Incorporating palliative care in the early stages addresses the physical, psychosocial, and spiritual
distress at that time. It can provide active comfort care and a positive approach to relieving
discomfort and distress. Ensuring comfort and relieving suffering can help patients and families to
know that they are actively cared for and supported as the illness progresses.
Neurological Diseases of Motor Function

A devastasting group of diseases cause severe weakness of voluntary muscles, while sparing
consciousness and cognition. This group includes amyotropic lateral sclerosis (ALS), Duchenne’s
muscular dystrophy and similar diseases affecting the motor unit, high cervical spinal cord injuries,
and the locked-in syndrome.
Amyotropic Lateral Sclerosis (ALS) is a prototype of this group of diseases. It is a progressive
and ultimately fatal motor neuron disease. Patients usually present with asymmetric weakness and
atrophy, initially involving the distal upper extremity, then progressing to affect all extremities. At
some point, the bulbar musculature is affected, causing dysphagia, and dysarthria. Median survival
time is approximately 4 years, but those with rapidly progressive symptoms die within 1-2 years.
Most cases are sporadic, with a median age of onset of 55 years. Weakness of respiratory muscles
leads to respiratory failure. Ventilator support and PEG tube feeding may be needed for advanced
disease, although many patients decline ventilatory support. Problems that need to be addressed
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include progressive dyspnea and respiratory failure, dysphagia, sialorrhea (excessive salivation
and drooling) due to facial weakness and dysphagia, excessive mucus production (due to
dehydration and recurrent infections), muscle cramps and spasticity, depression, constipation, and
dyarthria.
Patients with Duchenne’s muscular dystrophy and similar diseases affecting the motor unit, high
cervical spinal cord injuries, and the loked-in syndrome have palliative care needs which are similar
to the needs of patient with ALS. Locked-in syndrome, or de-efferented state, is due to injury to the
pontine tegmentum. Patients are completely paralyzed except for minimal vertical eye movements,
and occasional eye blinking, which they can use to communicate. They are completely conscious
and aware of their sorroundings. Many die soon after the injury.
Stroke
Stroke is an acute brain injury due to ischemia (80%) or hemorrhage (20%). About 25% of patients
die during the episode. 50% survive with neurological deficits. Some patients progressively
improve, while others progressively decline. Poor prognostic indicators include coma, persistent
vegetative state, dysphagia that compromises food and fluid intake, poor nutritional, and poor
functional status. Palliative care needs are similar to those of other debilitating neurological
conditions.
Parkinson’s Disease
Idiopathic Parkinson’s disease is characterized by tremors, rigidity, and akinesia. Dementia may
occur in advanced disease. Other symptoms include gait disorder, delusions, hallucinations, and
depression. Primary treatment includes dopamine precursors (L Dopa) with decarboxylase
inhibitors, dopamine agonists, and anticholinergic medications. Treatment may cause side effects
such as hypotension, confusion, and hallucinations. Problems with advanced disease include
constipation, bladder and bowel incontinence, progressive immobility, contractures, and dementia.
Patients with advanced Parkinson’s disease have palliative care needs which are similar to
Alzheimer’s disease.
Dementia
Dementia is a progressive, incurable illness, and all treatments are palliative. Alzheimer's disease
is the most frequently occurring form, and the risk of this disease increases with age.
Approximately 20% of people above 85% have Alzheimers disease. Dementia has a steady
downward course that varies in length. Because it is more difficult to project survival in patients
with dementia, palliative medicine services may not be instituted early. Physicians should
adequately manage the physical, psychosocial, and spiritual problems and symptoms. This must
be done in all stages of the disease. The needs of patients in each stage are different, but the goal
is always to provide comfort, and to preserve dignity and quality of life. The course of Alzheimer’s
disease is variable. Some patients rapidly decline and die within 2-4 years, while most will survive
8-10 years. Patients die due to co-morbidities and/or complications of chronic disability. Palliative
care for patients with advanced dementia include maintenance of personal hygiene, bladder and
bowel function, depression, anxiety, insomnia, psychosis, feeding, pain and other problems.
Management
Palliative care addresses the full range of issues and problems that patients and families may
have, and provides appropriate evaluation and management for these issues and problems.
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Physical Problems
Pain is common in advanced neurological and neurodegenerative diseases. In multiple sclerosis,
about half of all patients have pain. The most common causes are dysesthesia and muscle
spasms. Because many patients also have neuropathic pain, adjuvant drugs may be helpful.
Similarly, in motor neuron disease, about three-quarters of patients have pain. Pain may be
underdiagnosed and undertreated, and the palliative care team can provide a focused and effective
assessment and management of pain. Other physical causes of discomfort and distress should
also be addressed, such as insomnia, fatigue, constipation, nausea, and dyspnea.
Psychosocial and Spiritual Problems

Patients with Alzheimer’s and other dementias, such as Parkinson’s disease, experience
psychological and behavioral problems, which include depression, anxiety, personality changes,
and sleep disturbances. Huntington’s disease affects cognition and personality as well as
movement. Cognitive impairment is usually apparent at the onset of the movement disorder and
follows a progressive and unremitting course. As with other diseases which are familial, family
members have to cope not only with the cognitive and behavioural changes in their relative, but
also with the distress of knowing if they are also at risk. In multiple sclerosis and motor neuron
disease, the risk of depression increases with worsening disease, which results in increased
physical dependency, and isolation. Patients must cope with significant feelings of loss and fear of
losing their dignity.Psychological support and preparation for future progression of these conditions
are important.
Neurodegenerative diseases may affect articulation, and speech may become difficult. The inability
to communicate can cause frustration for everyone. Identify ways of communicating (eg,
communication boards and computerised methods) and anticipate communication difficulties.
Counselling about loss and grief may help alleviate psychological and spiritual distress. Loss of
communication due to physical or cognitive changes leads to isolation, and families and patients
need help to cope with this loss. Dementia may compromise communication, and the assessment
and management of pain and other problems. Patients with cognitive impairments are less likely to
receive analgesia, and other measures to relive discomfort and suffering. Agitated behavior may be
difficult to interpret. The palliative care service can help in determining the nature of distress.
Advanced Care Planning

Patients with advanced dementia and neurodegenerative disease, sometimes receive aggressive
nonpalliative interventions at the end of life, such as tube feedings, CPR, mechanical ventilation,
dialysis, and even surgery in their final days of life. The palliative physician can help clarify the
goals of care, and implement a more reasonable plan of care.
Management of Dementia
Dementia is also commonly associated with advanced age. Alzheimer’s disease, the most common
neurodegenerative disease, is responsible for 50%–70% of cases of dementia. Because of
comorbidities, this illness in older people has the potential to cause exceptionally high levels of
symptom distress, which are particularly difficult to assess and manage in the presence of
dementia. Palliative care can guide patients, families and caregivers in their management of the
downward trajectories of diseases in the elderly.
Dementia, especially Alzheimer's disease, may initially respond to drugs such as cholinesterase
inhibitors. These medications may improve ability to do activities of daily living, cognitive function,
or slow the progression of the disease process. Management of vascular risk factors may slow the
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progress of vascular dementia. Try to preserve independence for as long as possible. Depression
is common. Management may include antidepressants, cholinesterase inhibitors, and support
groups for patients and families. Palliative care may also include management of caregiver stress,
financial and social service assistance, pastoral counseling, treatment of behavioral and psychiatric
disturbance, nutritional management, and environmental assistive and safety measures.
Behavioral interventions may include providing calm environments, instituting routine activities,
visits from family, children, and pets; and playing the patient’s favorite music. Patients are at risk
for malnutrition and dehydration; and they should be monitored closely and managed appropriately
if these occur. Appropriate sleep problem management may include increasing activities and
decreasing napping in the daytime, to help patients sleep better at night.Low-dose tranquilizers,
such as haloperidol, risperidone, or olanzapine, may be needed for more severe behavioral
disturbances.
Advanced dementia is the final stage of the disease. Surrogate decision making may be needed.
Decision making is easier if the patient’s preferences were previously determined, such as through
an advance directive. Relieve pain and suffering. Provide adequate analgesics for pain during
procedures such as dressing changes or position changes. Try to avoid unnecessary procedures.
Patients may experience more distress from routine procedures, such as blood pressure
monitoring, phlebotomy, finger sticks, and catheterizations, because they cannot understand them.
The Functional Assessment Staging (FAST) Scale

The FAST Scale allows physicians and caregivers to chart the decline of people with dementia.
The FAST scale has 16 stages and sub-stages. Physicians can get a rough idea of where an
individual is at in the disease process by observing that individual's behavioral characteristics.
The Seven Major Stages

Stage 1 is the normal adult with no cognitive decline.
Stage 2 is the normal older adult with very mild memory loss.
Stage 3 is early Alzheimer’s disease. Memory loss becomes apparent to co-workers and family.
The patient may be unable to remember names of persons just introduced to them.
Stage 4 is mild Alzheimer’s disease. Patients may have difficulty with finances, counting money,
and travel to new locations. Memory loss increases and knowledge of current and recent events
decreases.
Stage 5 is moderate Alzheimer’s disease. The patient needs more help to survive. They do not
need assistance with toileting or eating, but do need help choosing clothing. They display
increased difficulty with serial subtraction. Patients may not know the date and year or where they
live. However, they do know who they are and the names of their family and friends.
Stage 6 is moderately severe Alzheimer’s disease. Patients may begin to forget the names of
family members or friends. They require more assistance with activities of daily living, such as
bathing, toileting, and eating. Patients in this stage may develop delusions, hallucinations, or
obsessions. Patients show increased anxiety and may become violent. They begin to sleep during
the day and stay awake at night.
Stage 7 is severe Alzheimer’s disease. In this stage, all speech is lost. Patients lose urinary and
bowel control. They lose the ability to walk. Most are bedridden and die of sepsis or pneumonia.
FAST Stages and Sub-Stages

1 No difficulties, either subjectively or objectively.
2 Complains of forgetting location of objects; subjective word finding difficulties only.
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3 Decreased job functioning evident to coworkers; difficulty in traveling to new locations.
4 Decreased ability to perform complex tasks (e.g., planning dinner; handling finances).
5 Requires assistance in choosing proper clothing for the season or occasion.
6a Difficulty putting clothing on properly without assistance.
Unable to bathe properly; may develop fear of bathing. Will usually require assistance
6b
adjusting bath water temperature.
6c Inability to handle mechanics of toileting (i.e., forgets to flush; doesn't wipe properly).
6d Urinary incontinence, occasional or more frequent.
6e Fecal incontinence, occasional or more frequent.
7a Ability to speak limited to about half a dozen words in an average day.
7b Intelligible vocabulary limited to a single word in an average day.
7c Nonambulatory (unable to walk without assistance).
7d Unable to sit up independently.
7e Unable to smile.
7f Unable to hold head up.
Coma and Persistent Vegetative State
Coma is a state of unresponsiveness to any stimulus, and lack of awareness of self or

sorroundings. Causes of coma include traumatic (eg head trauma) and non-traumatic injury- such
as stroke, encephalopathy (eg hypoxic/ anoxic, uremic, hepatic), drug overdose, severe
hypoglycemia, encephalitis, meningitis, and head trauma. Coma is either reversible or irreversible
depending on its cause and duration.
Persistent vegetative state (PVS) is a state of wakefulness without awareness (“eyes wide open
coma”). There is lack of awareness of self and sorroundings, and unresponsiveness to stimulus.
PVS is due to severe diffuse cerebral cortical damage, and injury to thalamus and the white matter,
while the hypotyhalamus and brainstem are spared and unaffected, which allows extended and
prolonged survival with adequate medical and supportive care. There is cranial nerve function such
as papillary, oculocephalic, corneal, vestibule-ocular, and gag reflex, and spinal reflexes. Common
causes include head trauma, massive stroke, and anoxic encephalopathy (usually after prolonged
cardiopulmonary arrest). Unlike coma, sleep-wake cycle is preserved. Patients can blink, vocalize,
grimace, and even move extremities nonpurposefully. “Locked-out” syndrome is used for PVS to
describe the disconnection of the cerebral cortex from the outside world. Unlike cases of patients
who have irreversible coma, there is still an ongoing ethical controversy in the withdrawal or
withholding of life prolonging interventions for patients with irreversible PVS.
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10 Palliative Care of Pediatric Patients
The causes of death in children are different from the causes of death in adults. Many children die
every year from accidents and trauma, congenital conditions, prematurity, hereditary diseases, or
other acquired illnesses. Palliative care interventions that are appropriate for adults may not be
appropriate for children; while other interventions may be very helpful for children than for adults.
Children with advanced debilitating illnesses, and their families, should receive palliative care,
especially when no treatment option can significantly change the progression toward death.
Children receiving palliative care have a variety of illnesses: about half have cancer, and the rest
have other illnesses- including congenital, chromosomal and neurodegenerative disorders.
Many diseases have a less certain prognosis. In this diverse pediatric palliative care population
there are diffferent illness trajectories:
• Potentially curable illnesses for which curative treatment is unsuccessful (eg, cancer)
• Illnesses in which medical management prolongs and improves life before a premature death
(eg, cystic fibrosis)
• Progressive illnesses for which no curative therapy is available (eg, most neurodegenerative
disorders)
• Non-progressive illnesses in which the child is highly likely to die early as a result of
complications such as protracted seizures or respiratory failure (eg, severe cerebral palsy)
In any given illness trajectory, the needs of the child and family change over time. With the
advances in medical science, some children who would have died early in life now survive longer,
but with high levels of disability and dependence; this has implications for families, providers and
the community. Even for these long-term illnesses, palliative care should be is appropriate years
before death.
The provision of palliative care for children involves a partnership between the child, family,
parents' employer(s), teachers, school staff, and health care professionals, including nurses,
chaplains, bereavement counselors, social workers, primary care physicians, subspecialty
physicians, and consultants. Physical, emotional, psychosocial, and spiritual/existential distress
must be addressed. The child should participate in his/her care as much as possible- taking into
account the child’s limitations due to his/her illness, developmental capacities, and level of
consciousness. Regardless of the prognosis, it may be appropriate to give the child a
developmentally appropriate description of his/her condition along with care plans, while soliciting
and listening to the child's opinions and preferences. Management planning should consider what
interventions, from the child's and family's perspective, will be of the most benefit.
Each available diagnostic or therapeutic intervention needs to be considered within the context of
the goals and expectations of the child and family. As the goals of therapy change with the
progression of the child's condition or disease, the appropriateness of some interventions may
change. Regular assessment, discussion and planning facilitate the smooth integration of any
changes. Relief of discomfort, distress and suffering are important goals of palliative care. Relief of
distress and suffering improves the quality of life of the child and the family. Adequate symptom
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control allows the child to enjoy life with family and friends, and participate more in his/her care.
The goal of palliative care is to add life to the child's remaining days, not simply day’s to the child's
remaining life.
Parents of Dying Children

The parents should be informed when cure is unlikely or no longer possible. Determine their
understanding of the situation. The child may or may not be part of the discussion, depending on
his/ her age, developmental stage, and other circumstances. If the child is not present, the
physician and/or parents should later discuss things with the child. Tell the parents what may
happen, physically and emotionally, as the illness progresses. For children with a terminal illness,
help the parents begin the process of accepting the possible death of their child. They may
experience preparatory (anticipatory) grief. They may focus on preparing for death while the child is
still alive. This may generate guilt; advice them that these reactions are normal. Redefine hope by
redirecting thoughts and efforts towards improving the quality of life, and achieving a peaceful and
good quality of death without distress and suffering, and with the presence of loved ones.
Parents are usually more involved as direct caregivers and decision makers for pediatric patients
than for adult patients. When a child becomes terminally ill and dies, parental grief may be more
intense than the grief experienced in response to other losses (eg, the death of a parent). There is
a greater risk of complicated grief reactions. Provide a realistic assessment of prognosis while
acknowledging uncertainty. Support parental expression of the disappointment, anger, grief, and
suffering associated with the child's illness. Acknowledging grief is the first step toward accepting
the reality of the child's eventual death. Parents can then focus on the quality of the child's
remaining life. Reassure the parents of the continued support of the palliative care team throughout
the child's life, as well as after death. Fear of abandonment and isolation is a major concern of
chronically and/or terminally ill children and their families. Some parents begin to grieve the loss of
their “expected normal child” even at the time of the diagnosis of a condition that will result in
disability and death. For some parents, continued hope for cure, no matter how unlikely, may be an
important coping mechanism or may be based on deeply held religious or cultural beliefs.
The determination of the place where death occurs- whether in an intensive care unit, another area
of the hospital, another institution, or at home- depends on factors such as the wishes of the child
and family, the physical environment and visitation policies of the alternative sites, the desire and
ability of staff to remain involved, and the availability of palliative care services.
The family must have the opportunity to carry out important family, religious, and/or cultural rituals.
During the terminal phase, the parents must be allowed to be with, and hold the child before and
after death. Support the parents during bereavement.
Children: Dying Child and Siblings

Acknowledge the child's own recognition of the likelihood of premature death, to help the child
communicate his or her wishes, and to plan for the child's death. Assist the parents in
understanding and supporting the siblings of the ill child, all of whom are affected by the child's
condition and eventual death. Help the parents attend to the needs of the ill child and siblings while
acknowledging the sadness that results from life-threatening illness. Siblings are usually distressed,
but may feel unable to share their feelings with already burdened parents. Reassure the children
that they have done nothing wrong and is not responsible for his or her own illness or that of a
sibling. Encourage them to talk about feelings of anger, sadness, fear, isolation, and guilt, or to
express themselves through art or music therapy. Provide the family with developmentally
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appropriate guidance about these difficult communications, encourage parents of older children and
adolescents to talk together as a family about their feelings, and encourage the sharing of
memories to facilitate bereavement and healing. In these tragic situations, it is also helpful to work
with the schools and other youth organizations to assist other children affected by the death of the
child.
Things to consider when discussing death with a child:
•
Child’s disease experience and developmental level
•
Child's understanding of and prior experience with death- family member, friends
•
Family's religious and cultural beliefs about death
•
Parent’s preferences about the timing and the content of the discussion
•
Child's, parents, and family’s usual patterns of coping
•
Expected circumstances of death
It is difficult to determine the appropriate time to start a conversation about a child's impending
death, as the parents’ preferences should be respected. Denial by parents and family members
may also be providing some relief from the overwhelming distress and sense of loss. However,
avoiding this conversation ignores the fact that many terminally ill children and their siblings are
usually aware of the seriousness of their condition. Children may keep silent in order to protect their
parents and families; but feeling helpless, unable to express and share their thoughts and feelings,
and isolated from those they need most. Clues that a child wants to talk about death may be subtle.
Age-appropriate supportive and caring counseling and communication are usually effective in
relieving the child's distress and suffering. The palliative care specialist should support the child
and his/her family, promote mutual support and growth during the final phases of the child's life.
Causes of Childhood Death by Age in Developed Countries

Age Groups Most Frequent Causes
0—1 year Congenital abnormalities, prematurity, labor/delivery-related events, perinatal
infections, sudden infant death syndrome
1—14 years Trauma (accidents, homicides, suicides) neoplasms, congenital
abnormalities
15—19 years Trauma (accidents, homicides, suicides), neoplasms, diseases of the heart
Assisting Parents with End-of-Life Decision Making

• Actively seek opportunities to provide and update information to the parent about the course of
management and disease status. Provide adequate information that is concise and
understandable. Involve the parents in health care and medical decision making. Discuss
various options and the advantages and disadvantages of each. Obtain good well-informed
medical decisions and consents from parents from care-givers as needed. Anticipate episodes
of vacillation and uncertainty. Reassure them that you respect any changes in their decisions.
Clarify facts and provide professional advice and support throughout the decision making
process.
• Provide the parents adequate private time with their child and family during the decision
process.
• Encourage interaction among parents of terminally ill children. Provide information and offer
support groups, resources, and activities.
• Regularly reassure parents that you recognize their love and care for their child; that they are
good parents.
• Regularly reassure that everything is being done to help relieve their child’s illness and
suffering; that expert and appropriate care is always being provided.
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• Involve other medical and health providers in discussions.
• Respect and recognize cultural, ethnic, religious, and personal values.
Communicating with the Dying Child

As they try to deal with their own reactions, help the family in dealing with the dying child's thoughts
and concerns. Many parents do not know how to discuss death with their child. They usually
believe that the child does not know that he/she is dying. The protective approach protects the
child from knowledge of the disease and prognosis; and, the open approach tries to provide an
environment in which the child feels free to express concerns and ask questions about his/her
condition. In the past, it was assumed that children did not understand death and a cheerful
“normal” environment protects the child from the serious illness and the awareness of death.
However, open discussion may help children adapt better to their condition.
Children usually have two main questions: “Am I going to die?” and “When?” It is helpful to tell the
child what can and cannot be done about the illness. Telling the child that the illness will not be
cured can be difficult. Do not cover-up difficult messages in technical language. Tell the child in an
open, straightforward, but caring manner. This promotes a sense of security and trust. However,
one must also leave room for hope. Redirect hope from cure to comfort. Tell the child that it is all
right and normal to feel confused, sad, or angry. That it is all right to talk about these feelings, or to
sometimes remain silent. Encourage participation in daily routines as much as possible.
Children may ask questions such as: what is death like; what happens after death; will they be
punished for the “bad things” they have done; will their parents and/or siblings be all right after they
die; when will they see them again; and will they experience pain and suffering while dying. Advice
parents about how to respond to these questions. Parents may also benefit from spiritual
counseling and guidance. Some children keep their thoughts to themselves. They may be afraid of
emotional abandonment; or they may be afraid of becoming a burden to their parents and siblings.
Play, art, drama, and therapeutic conversation, can help determine the child's private thoughts and
concerns, correct distortions, dispel fantasies, promote self-esteem, and help the child master
his/her fears. Encourage parents to participate in these activities.
It is important to help families feel that they have done all they could. Parents who are trying to
keep a sense of control may seem less cooperative, easily frustrated, and annoyed. This is a
common and normal response. Continued caring for the dying child is deeply appreciated by the
family, even those who are coping well on their own. Feelings of helplessness, loss, and despair
may also occur. Allow family members to participate in the child's physical and emotional care. It
can be as simple as having a sibling help the child eat, to having a parent give medications and
oxygen. Advice parents about the importance of their continued presence and support; and how
this reduces their child's feelings of isolation and abandonment.
Supporting an Ill Child (Davies and Steele, 1998)

• Listen to what the child needs and wants.
• Involve the child in the management plans. Promote self esteem and self care.
• Be comfortable with your own beliefs and feelings about death and dying in children so you can
approach a child with openness and honesty.
• Children are curious about their illness, its prognosis and about dying; provide opportunities for
conversation. Let the child control the conversation and set the pace for questioning. Look for
verbal and non-verbal cues to what the child really wants to talk about.
• Use simple, concrete language. Use pictures and stories for obtaining and sharing information.
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• Be honest and truthful.
• Simply stating “the facts” is usually inadequate. Explain and answer questions clearly; and
always confirm the child’s understanding of your answers and explanations.
• Accept fears and anxieties in children that may seem irrational from an adult perspective.
• Children often have fears related to separation and pain, such as separation from their mother,
painful or traumatic procedures, and the deaths of other children. Anticipate these tears and
provide opportunities for the child to voice such fears.
• Always be aware that children experience disease differently according to their stage of
development. The ability of the child to process information, and participate in decision making
vary according to their stage of development.
• Consider developmental issues. For infants, life-threatening illness may mean physical
symptoms, separation from parents and disrupted routines. For the adolescent, illness may
affect body image, interrupt peer relationships and increase dependency at a time when the
adolescent is trying to develop autonomy and independence.
• Consider approaching the child through play. Play is important to children; children use play to
understand their world.
• Make use of the school environment to support the child and family. School provides important
relationships for sick children, their parents and siblings.
• When appropriate, grief work can be facilitated by encouraging the older child to participate in
the funeral planning, burial arrangements, and other rituals.
How to Respond When the Child Asks About Death

Teach the parents how to respond when their child asks them if they are going to die. Discussing
with the parents how to respond to this question, also allows them to express their own worries and
concerns. It promotes a sense of control, a feeling of trust, and of being understood.
Responding to this question involves:
• Determining why the child is asking: The child may be reacting to the mood (eg anxious,
depressed, and worried) and behavior of the people around; or the child may be worried about
pain, discomfort, abandonment, isolation, and other concerns. Ask and allow the child to
express his/ her concerns; and address these concerns with the child.
• Telling the child: If the parents decide to tell the child, the process of telling must involve a caring
dialogue and discussion, not brief statements of facts. The parents may also feel that another
person should be the first to tell the child (eg religious caregiver who is close to the child, or
even the palliative care physician). Advise parent to use words that the child can understand. If
the child cannot understand, or does not want to know; then it is reasonable not to tell them
more. If things are too much to grasp all at once, give the child time to understand and slowly
realize what was told.
• Maintaining hope: Refocus hope from cure to comfort and the enjoyment of life. Tell the child
that his/ her parent/s, family and physicians will continue to care for him/ her.
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Phases in a Sick Child’s Acquisition of Information and the Critical Events
Influencing Understanding of Illness (Bluebond-Langner, 1978)
Phase Child’s Information Trigger Event Child’s Self-Concept
First It’s a serious illness (not all Parent being informed “I was previously well but
know the name of the of diagnosis (parents am now seriously ill.” For
disease) often are a primary children with chronic
source of information disease, “I was in my
for children) previous state of health
but am now seriously ill.”
Second The names of the drugs Parents being informed “I am seriously ill and will
used in treatment, how they that child is in remission get better.”
are given, and or worsening: child
their side-effects speaking to other
children with similar
illnesses The first
relapse or exacerbation
Third Purposes of special “I am always ill and will
procedures and get better.”
additional treatments
consequent to
the side-effects of therapy,
and the
relationship between
particular
symptoms and procedures
Fourth A larger perspective of the Several further relapses “I am always ill and will
disease as an endless or exacerbations never get better.”
series of relapses or and periods of
exacerbations and periods improvement
of improvement
Fifth The disease as a series of Child learns of the “I am dying.”
relapses or exacerbations death of an ill peer
and periods of improvement,
ending in death
Note: A child’s perception may be influenced by peers with serious illness and by the presence of a
chronic disease, such as cystic fibrosis or muscular dystrophy. From the time of diagnosis, the
child should be kept informed in a developmentally appropriate manner
Concepts of Illness and Death, and Supportive Interventions

(Frager, 1999; Wass, 1984; Rando, 1984; Gibbons, 1993; Faulkner, 1993; Hart and Schneider, 1997)
Life Period Characteristics Concepts of Illness and Death
Infancy • No conscious thinking • No concept of death
0—2 years • Limited language • Concept of death is the same as
• No concept of reality temporary separation or
• Experience the world through sensory abandonment
information
• Aware of tension, the unfamiliar, of
separation
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• Fears: separation from parents and
other significant people, fear of
strangers
Interventions:
• Provide maximum physical relief, comfort.
• Provide comfort through sensory input (e.g.. touch, rocking, etc.).
• Provide comfort with familiar people and toys.
• Consistent caretakers.
• Minimize separation from parents and other significan family members.
• Decrease parental/ family distress which is projected to the child
• Maintain the crib/ bed/ nursery as “safe places”- no distressing procedures
should be done in these places
• Counseling of parents and family; provide reassurance about the adequacy of
their care
• Spiritual care and support for the parents and family
Early Characteristics Concepts of Illness and Death
Childhood • Magical thinking • See death as reversible/ temporary
2—6 years • May play with stuffed animal by • Death is not personalized; do not
repetitively laying it down “dead’” then believe death could happen to them
standing it up “alive” • May equate death with sleep, or
• Fears: body injury, mutilation, loss of immobility
control, the dark, the unknown, being • May believe they can cause death
left alone by their thoughts, such as wishing
someone would go away
• May begin to develop more mature
concepts of illness and death
Interventions:
• Minimize the child’s separation from parents or provide reliable and consistent
substitutes.
• Do not underestimate the child’s level of comprehension
• Dispel misconceptions about death as a punishment for bad thoughts or
actions and the child’s being responsible for the illness and death and therefore
guilty due to bad thoughts.
• Verbal explanations may not be sufficient; use pictures, models, play therapy
• Provide simple, concrete information and explanations about illness and about
being dead (e.g., “a dead person no longer breathes or eats”)
• When appropriate, and depending on the parents’ spiritual and religious
beliefs and preferences, have discussions about love and caring from a higher
being, heaven, and other age appropriate discussions that can provide comfort
• Advice parents and other adult caregivers to show love, trust, respect, caring,
and disciplining appropriately without anger
Middle Characteristics Concepts of Illness and Death
Childhood • At this stage, the child may request • Sees illness as being due to
7—12 years graphic details about death, including external causes- person, objects, or
burial, decomposition, etc. actions (eg not using an umbrella
• Concrete operational thought; when it rained, or breathing in
beginning logical thought- but tendency bacteria from the air)
to be literal • Personalize death; aware that
• Early Stage: Understand causality death can happen to them
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by “external” causes such as accidents • Aware that death is final,
• Later Stage: Understand causality irreversible, and universal
by “internal” causes such as illness
• Fears: loss of control, body injury,
mutilation, failure to live up to
expectations of others, death
Interventions:
• Evaluate for fears of abandonment, destruction, or body mutilation.
• May benefit from specifics about the illness and treatment; diagrams, pictures,
and models may be needed for explanations.
• Reassurance that treatments are not punishments- that the child has not done
anything wrong, and hospitalizations are not punishments
• Access to peers (peer groups from school, church; same age support groups).
• Foster child’s sense of mastery and control.
• Provide choices whenever possible.
• Emphasize the “normal” activities that the child can still do.
• Depending on th parents’ and family’s spiritual and religious beliefs and
preferences, provide spiritual and/or religious counseling and support; allow
spiritual and religious activities- including prayers, sacraments, masses and
celebrations
Adolescence Characteristics Concepts of Illness and Death
> 12 years • Issues about unrealized plans (e.g. • Can understand the biological
school, marriage) explanations of illness and death
• Formal operational thought- beginning • Can understand that psychosocial
ability for abstract thinking problems can affect one’s illness
• Egocentric (self) concens • Understands finality and
• Feeling guilty for illness/ death universality of death but may feel
• Fears: loss of control, altered body distanced from it.
image, separation from peers • Ability to develop natural,
physiological, and spiritual ideas and
explanations about death
• Understands the effect of death on
family
Interventions:
• Allow expression of thoughts and feelings (eg anger, sadness, frustration).
• Allow the adolescent to participate in decision making about care.
• Provide privacy.
• Support reasonable measures for independence.
• Allow as many choices and as much control as possible.
• Emphasize the importance of cooperation and compliance.
• Access to peers (peer groups from school, church; same age support groups).
• Depending on th parents’ and family’s spiritual and religious beliefs and
preferences, provide spiritual and/or religious counseling and support; allow
spiritual and religious activities- including prayers, sacraments, masses and
celebrations.
• Assess the patient’s own personal values and beliefs.
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Responding to Questions and Statements about Dying
(Hurwitz, Duncan and Wolfe, 2004)
1-3 years
• Limited understanding between living and non-living. Life and death are alternate states, like
being awake and asleep, or coming and going.
“After I die, how long will it be before I’m alive again”, “Will you still tell me stories while I’m
dead?”
• Provide physical comfort and comforting presence. Use simple words to communicate love and
promote self-worth.
“I will always love you”, “You are my wonderful angel”, “I love you and I will always find a way to
tell you stories.”
3-5 years
• Egocentricity may make the child believe that he/she caused death. May view things as a
punishment. Death is temporary and reversible.
“I was bad, so I have to die”, “I hope I can watch TV in heaven”
• Coreect the perception of punishment. Lessen the guilt about dying, and leaving the family
alone. Lessen worries about how the family will be without them. Provide a comforting presence
and open communication.
“When you die, we will always miss you, but we know that you will be in a wonderful place with
grandma”
5-10 years
• Begins to understand the reality and permanence of death. May be viewed as a worrisome, or
even violent, event.
“How will I die?”, “Does it hurt a lot?”, “Is it scary?”
• Provide comfort. Promote a sense of control. Honest and caring communication. Encourage
participation in decision making.
“We’re a team. We’ll work together to make you comfortable. Tell us if you’re not feeling well;
we will help you. We will always be with you; don’t be afraid”
10-13 years
• Death is real and permanent. Everyone dies. May be interested in the details about the disease,
and/or details about the funeral. May view death as punishment for bad behavior.
“I’m worried that my mom will break down when I die”, “I’m worried that I’ll miss my family”, “I
don’t want to forgent my family when I die”
• Promote self-esteem, self-worth, autonomy, sense of control, and self-respect. Respect the
child’s privacy. Allow visits from friends and peers. Encourage participation in decision making.
Allow expressions of strong emotions and fears. Provide comfort and caring.
“We will miss you, but we know that you will always be within us to give us strength”
14-18 years
• A more mature and adult understanding of death. Death as an enemy that needs to be fought.
Death as a failure, as giving up. May be prone to risk taking behavior.
“This is not fair!” “I just need to be alone”, “I can’t believe I’m dying”, “This cancer made me look
awful”
• Caring, active listening- teenagers need someone to listen to them and understand how they’re
feeling. Promote self-esteem, self-worth, autonomy, sense of control, and self-respect. Respect
the child’s privacy. Allow visits from friends and peers. Encourage participation in decision
making. Allow expressions of strong emotions and fears. Provide comfort and caring.
“I know how you feel”, “You’re doing a good job handling all of this, despite it all; we’re proud of
you”, “Tell me more about what you’re feeling, what you’re worried about”
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Adolescent Patients
Guide for Dealing with Adolescent Patients

• Discuss with the parents the timing, the kind and amount of information that should be given to
the adolescent about the disease, prognosis, and course of management and illness. Provide
information that is appropriate to the patient’s developmental and behavioral stage.
• Reassure and recognize the patient’s efforts to help address his illness. Reassure that
everything is being done to provide comfort and relieve the patient’s illness and suffering.
• Involve the adolescent and parents in health and medical care decision making. Provide
professional advice and help clarify issues. Discuss the advantages and disadvantages of
various options. Give the adolescent and parents appropriate and complete information in a
clear and understandable manner to help them make well-informed health and medical
decisions. Allow the adolescent adequate private time with his parents and family during the
decision process.
Anticipate possible vacillation and changes in decisions. Provide professional advice to help the
ongoing decision making process. Reassure them that you will respect any changes. Respect
cultural, ethnic, personal, and religious values during the course of management and decision
making.
• Encourage interaction with other patients and support groups.
• Offer private counseling and advice for the parents, siblings, and the patient.
Treatment Refusal of the Older Child or Adolescent

• The treatment refusal of a child (usually the adolescent) may be due to various factors, such as:
feelings of hopelessness and helplessness, and concern about the side effects of treatment.
• The older child or adolescent may be asserting their independence. Involve them in the
discussion and decision-making process. Calmly sort out which factors are influencing the
decision and proceed in an orderly manner to discuss them.
• Support groups are effective because they can confront each other about their decisions,
thoughts, reactions, feelings, and behavior. Groups allow them to share coping skills, and
provide general support.
• Sometimes the older child or adolescent feels that the parents are making all the decisions.
After advising them about the situation, parents may be requested to withdraw a little to give the
child a bigger role in communicating with the staff. Discuss with the parent/s how much
information is appropriate for the child.
• During the discussion, the risks and benefits of further treatments must be presented clearly,
even when the treatment is palliative. Discuss quality of life. Address the distress and
discomfort of side effects are the most common reasons for refusing further treatment.
Siblings
• The child’s parents and other adult members of the family should be helped in understanding
siblings’ reactions to the illness.
Common Sibling Issues

• Wanting to know about their sibling’s illness, fears of their sibling dying and being left behind,
fears of self or other family members dying, guilt about being responsible for the illness,
jealousy about the attention being given to their ill sibling, being neglected by parents, changes
in family routine, and others.
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• In general, children < 5 years old feel the parents’ withdrawal and a loss of caring; children from
5 to 10 years old are concerned about their ill sibling and may also fear for themselves and
other family members.
• After death, siblings may experience survivor guilt, and manifest physical and/or psychosocial
symptoms and problems.
Management of Common Sibling Issues

• Regularly ask the parents how the ill child’s siblings are doing at home and in school. If
problems and concerns are present, then further assessment and interventions should be done.
• School related problems may require the education, cooperation and help of teachers and
classmates.
• Advise the parents on how to address problems and issues concerning the siblings. Advise
them on what and how age-appropriate information can be shared. Older siblings may require
more details and information than younger ones. Siblings may have distressing fears about the
death of their ill sibling or about death in general, but are afraid to ask their parents.
• Visits can be helpful, but appropriate preparations should be done. Avoid causing distress or
overwhelming the sibling/s during their visit. Give them age-appropriate explanations and
descriptions of what they will see in the hospital, and in their ill sibling’s room – eg other sick
children in the hospital, medical equiptment, tubes and catheters, and how their ill sibling looks
(which may include verbal descriptions or even pictures).
• Problems and issues affecting the parents or the entire family also adversely affects the
sibling/s. These problems and issues should be assessed and managed appropriately.
Grandparents, Aunts and Uncles

The child’s granparents, aunts, and uncles may play an important role in the care of the child.
These adult family caregivers are also at risk for coping and adjustment problems, mood problems,
and other physical, psychosocial, and spiritual issues. At times, these adult family members need
to support and care for both the child and the parents who are also distressed by the child’s illness.
They should also be regularly assessed for any problems and issues, and offered help and
supportive care if needed.
Barriers to the Initiation of Pediatric Palliative Care

• Denial: Parents unable to admit that cure is not an option. Provider/s unable to admit that cure
is not possible or likely.
• Cure vs Comfort: Avoid asking parents to make this distressing choice. This causes guilt
regardless of the decision. Comfort can always be provided regardless of the decision not to
cure.
• Uncertainty: Uncertainty of prognosis.
• Loss of Security: Fear that it will interfere with the therapeutic alliance with other specialists.
Fear that the security provided by visits to or admissions to specialized centers will be lost.
• Inexperience: Parents fear that they are incapable of adequately caring for their child.
Provider/s unfamiliar with palliative care services and management.
• Personal Distress: Parents fear that they cannot cope emotionally. Provider/s difficulty in
coping emotionally.
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Basic Psychosocial Intervention Guide
Child
• Develop self-esteem: Focus on the child’s good qualities and talents- on the positive aspects
of the child’s abilities and personality. Encourage and stimulate the child’s ongoing
development: physical, emotional, social, and spiritual.
• Understand and accept of one’s limitations: Let the child know that you understand their
expressed concerns and difficulties. Use examples of people with disabilities, to serve as role
models of the child. Help the child accept the limits imposed by the disease. Help the child think
through their concerns and difficulties, and help him/her cope with them (e.g. focus on their
other abilities, start on other projects/ activities that they can do).
• View the disease as a challenge: Instead of feeling helpless and/or hopeless, help them view
the disease as a challenge to care for oneself and make oneself feel better. Give the child a
sense of responsibility for caring for oneself.
• Develop autonomy, and self care: If children are able to do something safely, then allow them
to do it, and do not do it for them. Teach the child how to care for and be responsible for
oneself; include them in the management plan. Praise and acknowledge positive behavior that
shows autonomy, initiative, and self care. Assign tasks and responsibilities based on what the
child can do. Develop confidence and assertiveness to say “no” to peer pressure to do risky
activities. Let the child know that it is possible to be assertive and to say “no” to friends, without
damaging their friendship.
Family
• Understand effective and ineffective parental behavior: Educate the parents and other
family members on how to help the child develop self esteem, autonomy, and accept one’s
limitations. Help the parents find a balance between preventing problematic and risky activities,
and allowing the child to experience normal activities. Help them understand which behaviors
are overly protective and overly permissive, and their adverse effects (e.g. overprotectiveness
can make the child feel useless, fearful, too dependent and unable to care for self; excessive
permissiveness can make the child become problematic, demanding, and a risk taker). If there
is anything that children can safely do by themselves, then allow them to do it. Educate parents
and and other adult family members on how to listen and understand the children, including the
one who is sick. Encourage “family times” for talking, playing, and sharing.
• Develop a stable and caring home environment: Help the parents, the child, and other family
members develop rules to create a stable and predictable environment (e.g. consistent
playtime, television time, and bedtime rules). As much as possible, develop similar rules for all
the children. Help the parents determine which behavors are to be encouraged and which ones
are to be discouraged; and the appropriate forms for punishment and reward. Remind the
parents and adult family members to continue to let the other children feel that they are also
loved and cared for.
• Support the parents, siblings, and other members of the family: Acknowledge and show
empathy for the family members’ reactions, e.g. sadness, distress, guilt, hopelessness,
helplessness, doubt, uncertainty, anger, and fear. Help them understand and handle these
reactions. Provide counseling, individual and family therapy, spiritual and pastoral care,
pharmacotherapy, and other management interventions if needed.
Community
• Develop a caring social environment: Educate parents, adult carers, and teachers on how to
best teach and care for the child; develop and agree on an approach with them. Educate them
about the child’s disease/s: risks, complications, myths, physical and psychoemotional effects
on the child. Allow low risk play and other activities.
• Support groups and social networks: Participate in social networks and support groups.
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Collaborative Plan of an Integrated Pediatric Palliative Care
The success of a collaborative plan of palliative care depends on reciprocal communication
between all groups, pertinence and applicability of the plan to the family circum stances, and
frequent reassessment of the plan.
Family
Parents, Child,
Siblings,
Grandparents, and
others
Primary Care Group Community Group

Collaborative Groups
Tertiary Care Group Setting Goals of Care School Group
Assessment of Needs
Palliative Care Group Resource Groups
PLAN
Simple, Address family lifestyle priorities, Culturally appropriate, Clearly
communicated, Easily modified,
Provision for family and caregiver training and education, Provision for respite care,
Spiritual and pastoral care, Family support and counseling, Individual support and
counseling,
Pre-emptive crisis management, 24 hr access to providers, Immediate access to
hospital/ acute care / palliative care institution
A successful integrated palliative care involves the collaboration of various groups. The palliative
care team should coordinate various services, and facilitate communication between the patient,
family, and various groups.
Family: The traditional core family includes the patient, parents, and siblings. Extended family
members include the grandparents, etc. It is important to try to involve all family members as much
as possible. Provide adequate information, counseling, and manage problems and conflicts.
Primary Care Group: This includes the primary physicians, nurses, and caregivers who cared for
the patient before diagnosis. A child with life-limiting illness still needs primary care services, and
this is provided by the primary care group, or the palliative care team in coordination with them.
Tertiary Care Group: This includes specialists, sub-specialists, hospital based pediatricians, and
other care-givers. Once the care shifts from aggressive diagnosis and curative treatment, to
palliative care, the tertiary care group should still work closely with other physicians and caregivers.
Resource Group: This includes individuals, groups, and agencies that provide financial and other
resources, including volunteers or personnel for respite care.
School / Activity Group: A child in palliative care should not be deprived of education, and even
attendance in school if possible. This helps in the accomplishment of developmental tasks, and
opportunities for social interactions.Coordination between the palliative team and school is needed.
Community Group: This may include people in church, neighbors, the parent’s employers, and
people from various community organizations.
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Symptoms and Suffering at the End of Life in Children with Cancer
The Degree of Suffering from and the Success of Treatment of Specific Symptoms in the
Last Month of Life. Panel A shows the percentages of children who, according to parental report,
had a specific symptom in the last month of life and who had "a great deal" or "a lot" of suffering as
a result. Panel B shows the percentages of children who, according to parental report, were treated
for a specific symptom in the last month of life, and in whom treatment was successful (rather than
"somewhat successful" or "not successful"). Wolfe J, Grier H, Klar N, et al: Symptoms and suffering
at the end of life in children with cancer. N Engl J Med 342:326-333, 2000
Management of Common Symptoms and Problems

Children in palliative care experience a high prevalence of symptoms, such as fatigue, pain, and
dyspnea, which results in significant suffering. Appropriate symptom management is important in
palliative medicine. In young children, the effectiveness of the medications can also depend on its
taste (a potent medication will not be effective if it doesn’t always get swallowed; and struggling to
get the child to take the medication causes added distress to the child, parent/s, and carers). Non-
pharmacologic management should also be appropriate to the child’s age and development.
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Procedures and interventions that can be frightening, painful or distressing to the child (and the
family) must be explained clearly to the child and parents. Appropriate analgesia, sedation, and/or
non-pharmacologic methods of distraction should be used for these procedures and interventions.
If appropriate, ask the parents to help soothe and calm the child during the procedure/ intervention.
A distressing experience (for the child and family) will make it difficult to do necessary procedures
and interventions in the future. Advice the parents, and obtain a consent from them for procedures
and interventions.
Fatigue
Fatigue is one of the most common symptoms experienced by children in palliative care. It can be
difficult to assess and manage. It is usually multifactorial, and includes factors related to the
disease; treatment of the disease; co-existing problems such as anemia, infection, malnutrition,
and cardiac, respiratory, renal, and hepatic problems; sleep problems; pain; medication side
effects; spiritual problems; and psychosocial factors such as anxiety and depression. Evaluation
aims to identify treatable underlying causes. It may not be possible to completely reverse fatigue
that is due to advanced terminal illness; and this should be explained to the patient and family.
However, some interventions are relatively simple and should be considered. Review the
medications to determine possible adverse reactions. Consider an exercise regimen. Attempt to
resolve physical inactivity, insomnia, anorexia, anemia, hypothyroidsm, correctable metabolic
abnormalities, depression and other potentially treatable problems.
Depression and Anxiety

Reactive depression and anxiety are prevalent among terminally ill children. They can worsen pain
and other symptoms; and worsen quality of life. Identify and manage possible contributing factors
such as unrelieved distress (eg pain, dyspnea), psychosocial, and spiritual distress. Management
may include age-appropriate psychosocial interventions and counseling, family counseling and
spiritual counseling and support. Pharmacologic management is needed for more severe cases.
Adjustment disorder may manifest with depressed mood, anxiety, behavioral problems, and others.
Hopelessness, helplessness, worthlessness, guilt, and suicidal ideation may be better indicators of
depression in the terminally ill than the traditional vegetative symptoms which can also be due to
the patient’s terminal disease. Always have a low threshold for treating depression. Counseling can
help with coping, by addressing fears and worries, and by providing meaning, reconciliation, and
closure. Psychostimulants, selective serotonin reuptake inhibitors, and tricyclic antidepressants are
the standard treatments for depression in the terminally ill, especially seriously ill patients who are
cannot engage in and benefit from counseling and other psychosocial interventions. There are
some concerns about adverse effects (including suicide) of SSRIs. Less controversial options
include bupropion, fluoxetine, and tricyclic agents. Psychostimulants (dextroamphetamine,
methylphenidate, and pemoline) are useful near the end of life, because of their quicker onset of
action. They also counteract sedation due to opioids.
For anxiety, benzodiazepines may be used intermittently or for a short duration. This can also
provide adjuvant relief of pain and/or dyspnea; and improve sleep. Prolonged use may lead to a
decreased anxiolytic effect and psychomotor impairment. Neuroleptics (eg haloperidol, olanzapine,
risperidone) may be needed for severe anxiety with confusion and agitation.
Anemia and Bleeding

Terminally ill children, particularly those with hematologic malignancies or cancer metastasis to the
bone marrow, may develop anemia and thrombocytopenia. The palliative care team should advise
the family and determine their management preferences.
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Anemia
If the patient demonstrates symptoms from anemia (e.g., decreased strength, dizziness, shortness
of breath, tachycardia) or continued blood loss, periodic transfusion of red blood cells may be an
appropriate palliative course of action. Laboratory tests should be kept to a minimum, with the team
concentrating instead on evaluation of the symptoms and the response to transfusion. There
should be no assumption that transfusions will be given indefinitely, because there may come a
time when the patients clinical status changes and further transfusions will not likely benefit the
patient.
Bleeding and Thrombocytopenia
If the child is thrombocytopenic and experiences bleeding symptoms (e.g., nosebleeds, GI bleed),
then platelet transfusion support should be discussed with the family. Transfusions are reasonable
palliative care options; however these usually require hospitalization, and the effect can be
transient at times. Determine the family’s goals and management preferences. Massive external
bleeding is commonly feared by families; fortunately, it occurs infrequently. Consider readily
available sedatives, and dark colored towels.
Central Nervous System Problems

Seizures
Seizures can be very distressing for patients and families. Seizures can be due to brain tumors,
stroke, or CNS bleeding because of thrombocytopenia or other bleeding disorders. Not all seizures
are grand-mal seizures; subtle, mild, or localized forms may also occur. For new onset of seizures,
it may be reasonable to evaluate for potentially treatable causes. Imaging studies (CT, MRI) may
be considered, especially if the discovery of an underlying cause will alter the plan of management,
e.g., an intracranial mass that responds to palliative radiation therapy.
If seizures occur in a patient who is taking anticonvulsant therapy, they can often be controlled by
increasing the dose of the anticonvulsant. Benzodiazepines can be used to resolve seizures
quickly. Intravenous (IV) solution of diazepam (0.1-0.2 mg/kg) can be administered rectally-
diazepam suppositories take longer to work. Lorazepam can be administered buccally. If the child
is at risk for seizures, always have a benzodiazepine readily available. Not all seizures require the
immediate use of benzodiazepines; some mild, localized, and transient seizures- especially in
children with neurodegenerative illnesses, can be conservatively managed and observed for 5-10
mins. Seizures due to increased intracracial pressure can be managed with increasing doses of
steroids (eg dexamethasone), acetazolamide, and radiotherapy (if possible); however, families
should be advised that beneficial effects are temporary. During the terminal phase, the child may
not be able to take and absorb oral medications and other routes should be used. The rectal route
(rectal diazepam as described above) and parenteral (SC/IV) route using benzodiazepines- eg
Midazolam (Load 150 mcg/kg, then 50-150 mcg/kg/hour), or Phenobarbital (Load 10-15 mg/kg,
then 5-10 mg/kg/day), are usually used. Midazolam can also be given intranasal (200
mcg/kg/single dose), or buccal (400 mcg/kg/single dose, up to 10 mg).
Increased Intracranial Pressure
Increased intracranial pressure can be a result of a brain tumor. Radiotherapy can be used, but if
the patient fails to adequately respond, consider increasing the dose of dexamethasone. Shunt
placement is a new treatment approach; however the risks involved in the procedure and later
complications, much be carefully weighed against the potential benefit.
Spinal Cord Compression
Spinal cord compression due to epidural metastases and other spinal pathologies can result in
significant pain and discomfort. New onset back pain should evaluated. Normal findings on
physical examination do not rule out cord compression. Consider an imaging study if indicated.
MRI is better than a CT scan. If the treatment is done while the patient is still ambulatory, the
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chance of remaining ambulatory is approximately 90%. Even if the patient loses some function,
earlier intervention can lead to improved outcomes. Steroid therapy decreases cord edema and
pain, helps preserve neurological function, and leads to better outcomes after more specific
therapy. Radiation therapy may also be helpful for radiosensitive tumors.
Sleep Problems
Routinely ask about sleep problems. Identify and manage aggravating factors (eg dsypnea, pain,
anxiety, depression). Sedating medications which can be used include sedating diphenhydramine,
and short acting sedative-hypnotics including benzodiazepines). Consider low dose tricyclic
antidepressants especially if there is associated neuropathic pain. Melatonin may also help.
Fever and Infections

Assess the terminal child with fever to determine whether diagnostic tests should be done, or
antibiotic therapy begun. Review the management preferences and goals of the patient and family.
The approach can range from a complete workup with i.v. antibiotic administration to empiric
treatment of infections to relieve the child's discomfort, such as dyspnea and cough due to
pneumonia, or dysuria due to a urinary tract infection. It may be reasonable to treat for pneumonia
if fever, cough, and increased respirations occur, even without requiring chest x-ray films to confirm
the diagnosis. In discussing the options with families, consider how responsive the infection may
be to antibiotics, whether they can be administered in the setting of choice, whether there are
adverse reactions that may result from antibiotic therapy, and how uncomfortable the child will be if
the infection is not treated. The usual practice is to treat relatively simple infections, such as
pneumonia, urinary tract infections, and skin infections, with oral antibiotics in the home. More
severe infections such as sepsis or widespread fungal disease may be more difficult to manage at
home. Advice families that death resulting from sepsis can be very peaceful, and sometimes,
intervening with i.v. antibiotics may only serve to prolong suffering. Fever can usually be controlled
with acetaminophen alone or with acetaminophen combined with ibuprofen.
Gastrointestinal Problems
Nutrition and Hydration
Decreasing food and fluid intake are common. In terminal illness, the cause is usually multifactorial.
Try to detect the problem and institute management early. Identify and treat potentially correctable
causes. Once the anorexia-cachexia syndrome occurs, it is often irreversible, even with aggressive
nutritional support. Supplemental hydration and nutrition for children with advanced cancer is
controversial. Some argue that the naturally occurring decreased oral intake is not usually
associated with symptoms of hunger and thirst. Others argue that dehydration and poor nutrition
may contribute to patients suffering. These symptoms may cause significant distress for the family.
Near the end of life, advice families that decreased appetite and thirst are normal in the dying
process. The goal of nutrition and fluid management should be to alleviate any hunger and thirst, to
reduce anxiety, and to decrease isolation and maintain a sense of normalcy and preserve the
social aspects of mealtimes. Small, frequent meals may be more manageable than large meals.
Magestrol acetate can be used to stimulate appetite and promote weight gain. More invasive
strategies such as gastrostomy tubes, or i.v. hydration or nutrition should be based on individual
patient and family needs.
Nausea and Vomiting
Identify and manage the possible cause/s of nausea and vomiting. Review the medications, look
for signs of abdominal tumor involvement, gastritis/ulcer, GI infection, and even caonstipation and
impaction. Young children may find it hard to describe N/V; and instead, they may have symptoms
of weakness, lethargy, poor appetite, irritability, and/or inactivity. Non-pharmacologic interventions
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may include acupuncture, TENS, relaxation, and imagery. Selective 5-hydroxytryptamine
antagonists are usually effective; this can be supplemented by diphenhydramine, and/or low dose
benzodiazepines. Haloperidol and other phenothiazines (eg promethazine, chlorpromazine) are
also effective; consider adding diphenhydramine to avoid extrapyramidal reactions. Scopolamine or
meclizine can be used for N/V that is worse with movement. Dexamethasone and/or acetazolamide
can be used for N/V due to increased ICP. Dexamethasone and lorazepam may be helpful in
refractory symptoms.
Constipation
To detect constipation in children, monitor for changes in bowel habits that may indicate
constipation (eg less frequent, hard stools). Identify and manage the possible cause/s of
constipation. Ask the child and/or parents about the child’s bowel habits, and educate them on
constipation, including its causes and management. Modify the child’s diet regimen (eg soften,
puree, and restrict certain foods), if the child has problems chewing, swallowing, or digesting
certain kinds of food. Rectal exam in children can be very distressing, and should be done only
when absolutely necessary. Use the little finger in small children. Rectal tears and anal spasm will
make the rectal exam very difficult and painful. A distressing experience (for the child and family)
will make it difficult to do exams in the future. Institute appropriate prophylaxis when indicated (eg
with opioid therapy). Common causes are immobility or inactivity (eg wheelchair or bed bound),
poor fluid and dietary intake (eg decreased fluid and/or food intake if taste is altered, or if the child
is not feeling well), metabolic problems (eg dehydration, hypercalcemia, hypokalemia), and drugs
(eg opioids, anticholinergics, anticonvulsants), GI obstruction or neurological disease (affecting
nerve pathways affecting defacation). Pain on defacation of hard stools when constipated can
make the child fear defacation and hold back the urge to defacate. Hard stools can cause
superficial rectal tears which cause or worsen constipation by causing pain on defacation and anal
spasm. Children can be shy about using toilets in places other than the home; they may not know
where the toilet is, and may be too shy to ask. Check food and fluid intake; check for dehydration.
Review the current medications and possible side effects of each. When the diagnosis of
obstruction is unclear, consider an abdominal x-ray, or CT. Management usually involves the use
of laxatives. Management of diet, fluid intake, mobility, and pain are also important; educate and
involve the patient and family in the management plan. A stimulant (eg senna) may be used in
combination with a softener (eg docusate), or an osmotic laxative (eg lactulose). Rectal
suppositories and enemas are used only if oral medications are not tolerated or ineffective.
Intestinal Obstruction
While surgery remains the primary treatment for malignant intestinal obstruction, some patients
with advanced cancer or poor general condition are poor surgical candidates and need alternative
management to relieve distressing symptoms. Many symptoms can be relieved with pharmacologic
methods, which may include morphine, scopolamine, dexamethasone, and haloperidol.
Diarrhea
Identy and manage the possible/cause/s of diarrhea. Common causes are infection (bacterial,
viral), and malabsorption. Suspect dysentery when the child presents with fever, abdominal pain,
and/or bloody stools, and consider empirical antibiotics (eg cotrimoxazole). Discuss management
options for dehydration with the parent/’s. Provide advice and reassurance. Replace fluids lost;
ensure adequate hydration. First consider oral rehydration solutions given in small and gradually
increasing amounts. Yoghurt or soya milk may sometimes help with malabsorption. Discuss the
need for IV or SC hydration. Kaolin, pectin, and cholestyramine can be helpful. Barrier creams
should be used to prevent rashes and skin irritation. Diarrhea near the end of life may be due to
inability to tolerate oral/enteral nutrition and hydration; discuss the benefit and burden of providing
food and fluids. Decreasing the amount of food/fluid (or discontinuing them if they still cause
significant burden) may be appropriate.
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Dyspnea
Dyspnea is an “uncomfortable awareness of breathing” or a subjective sensation of air hunger. It is
common and can cause significant fear, anxiety, and discomfort. It can be difficult for the child to
describe. Determine the cause of the respiratory distress and institute the most appropriate
treatment. Common causes are pulmonary congestion or edema, reactive airways, infection, and
pulmonary metastases. Management may include: saline nebulization (for increased secretions),
bets agonists (eg salbutamol for bronchospasm). Supplemental oxygen can be beneficial even
when dyspnea is unrelated to hypoxia (a nasal cannula may be more comfortable than a mask).
Consider a trial of continuous or intermittent oxygen therapy. Consider opioids +/- benzodiazepines
especially when other measures fail to provide relief. Opioids are effective in relieving dyspnea.
Low dose benzodiazepines can be carefully added to the opioid regimen especially if opioids do
not provide adequate relief, and/or significant anxiety is present.
Cough
Identify and manage possible underlying cause/s. Cause specific management may include:
diruetics (CHF), proton pump inhibitors (GERD), antibiotics (infection), and others. Excessive
secretions can be decreased by anticholinergic agents. Parents can be taught how to do chest
physiotherapy to relieve secretions. Humidified air and oxygen can be tried. Nebulized saline,
salbutamol, or ipratropium may also be used. Monitor the child’s response and stop or modify the
regimen if: there is poor or inadequate response, the procedure increases coughing, or the
treatment itself upsets the child (especially if a mask is used for nebulization). For pharmacologic
symptom control, start with mild over the counter cough suppressants. Stronger opioid medications
may be needed for sever cases. Nebulized local anesthetics can increase the risk of aspiration and
should be used cautiously.
Pain
Many terminally ill children, and more than 80% of children with advanced cancer experience pain,
regardless of the underlying diagnosis. Severe pain that is due to impingement on the spine and
major nerves, may require aggressive measures, such as placement of an epidural catheter.
Barriers to Effective Pain Management

To ensure effective pain management in children with advanced cancer, it is important to be
familiar with common barriers leading to undertreatment of pain at the end of life.
• Deficit in knowledge and experience.
• The unsubstantiated fear of inducing addiction. Parents of young children are particularly
sensitive to this concern and at times need to have the difference between physical
dependence and addiction carefully explained.
• Misconceptions about opioids and the idea that beginning morphine, or a “morphine drip”
means “giving up”. Emphasize that maximizing comfort does not exclude continued hope
and treatment of the underlying disease- if it is still possible.
• The fear of hastening death through respiratory depression, or excessive sedation.
However, there are no definitive data in the literature that support the belief that appropriate
use of opioids hastens death in patients dying from cancer or other causes. It is even
possible that the proper treatment of pain, discomfort, and suffering may prolong rather than
shorten life.
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Assessing Pediatric Pain
Assessment of pediatric pain requires an understanding of child development so that the
practitioner can choose an appropriate assessment tool, which should then be used consistently.
Without regular assessments, there is poor correlation of pain perception between patients, family,
physicians and caregivers.
Body Maps: Can be used to describe and document pain location; and even pain intensity and
pain characteristics (eg using different symbols for types of pain, or colors for pain intensity). Child
may be asked to indicate on a body illustration (or themselves) where their pain is.
DEGRR Scale (Gauvain-Piquard et al, 1999; Gauvain-Piquard et al, 1983)

This scale consists of 15 items in 3 categories or dimensions of behaviors: 9 items specific to pain;
5 related to psychomotor inertia; and 4 related to anxiety. Each item is scored from 0—4, with a
total possible score of 60. A score greater than 12 indicates pain.
This scale also can be used to assess pain in adult patients with dementia or delirium.
Scoring for each item:
0 The child moves without any difficulty. His movements are supple and easy.
1 The child moves with some difficulty, and sometimes a little unnaturally.
2 The child is careful when making certain movements.
3 The child clearly avoids certain movements and moves, in general, with great care.
4 The child must be helped to avoid unduly painful movements.
Behaviours Specific to Pain: 6 ITEMS

ITEM 1: Unnatural postures
The child avoids certain painful positions or adopts a particular position in order to relieve a painful
area. This item should be studied when the child is sitting or lying down with no physical activity. It
should not be confused with the antalgic position during movement.
ITEM 2: Protection of painful areas
The child seems continuously to avoid all contact with painful areas.
ITEM 3: Expressing pain
This item concerns the way in which the child says he is in pain, either spontaneously or when
asked, during the period of observation.
ITEM 4: Indicating painful areas
The child locates his pain, either spontaneously or when asked.
ITEM 5: Pain avoidance when moving
The child spontaneously avoids all movement or tries not to move part of his body. To be scored
during sequences of movements (e.g., walking), possibly induced. Motor slowing should not be
noted here.
ITEM 6: Reactions to examination of the painful area
When a painful area is examined, the child resists, pulls away, or reacts emotionally. Only the
child’s reactions to the examination should be noted and not any previous reactions.
Psychomotor Inertia: 5 ITEMS
ITEM 7: Resignation
The child is resigned to everything that happens to him. He does not try to protest or resist. Should
be scored during an unpleasant situation, such as venipuncture.
ITEM 8: Withdrawal
The child sometimes “withdraws into his shell.”
ITEM 9: Lack of expression
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Concerns the ability of the child to register and express feelings by his tone of voice, eyes, and
facial expression. Should be scored when the child is active (e.g., during games, meals and
chatter).
ITEM 10: Lack of interest in surroundings
Concerns the child’s available energy for interaction with his environment.
ITEM 11: Slowness and paucity of movement
The child’s movements are slow, restricted and rather stiff, even areas away from painful areas.
The trunk and large joints may be motionless. Scored in relation to a normal child’s movements.
Anxiety Behaviours: 4 ITEMS
ITEM 12: Tenseness
Concerns the degree of nervous tension in the child’s body.
ITEM 13: Hostility or Irritability
Measures the child’s hostility toward those around him.
ITEM 14: Wariness at being moved
When the child is moved for a meal, bath, etc., he is wary, says or shows how he wants to be
moved, resists or holds onto the adult’s hand.
ITEM 15: Crying easily
Concerns the extent to which the child cries in order to express himself.
Pediatric Pain Profile (RCNI, 2003)

The Pediatric Pain Profile has been developed to help assess and monitor pain in children who are
unable to communicate pain through speech, especially those with severe neurological
impairments. It is based on behaviors that are important indicators of pain.
• Using the scale, do a baseline assessment of the child’s behavior during a “good day” (no pain),
and during pain episodes.
• Add the score on each item- the total score ranges from 0 to 60 called the PPP Score.
• Recent studies show that a PPP Score of 14 or more is generally associated with moderate to
severe pain. However, the interpretation of the score should be individualized- based on the
age of the child, illness, and type of pain.
• When My Child Has Pain, He or She…
• Each item is rated on a 4 point scale:
(3) Not at All; (2) A Little; (1) Quite a Lot; (0) A Great Deal
• Is cheerful
• Is sociable or responsive
• Each item is rated on a 4 point scale:
(0) Not at All; (1) A Little; (2) Quite a Lot; (3) A Great Deal
• Appears withdrawn or depressed
• Cries/moans/groans/screams or whimpers
• Is hard to console or comfort
• Self-harms e.g. biting self or banging head
• Reluctant to eat/ difficult to feed
• Has disturbed sleep
• Grimaces/ screws up face/ screws up eyes
• Frowns/ has furrowed brow/ looks worried
• Looks frightened (with eyes wide open)
• Grinds teeth or makes mouthing movements
• Is restless/ agitated/ or distressed
• Tenses/ stiffens/ or spasms
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• Flexes inwards or draws legs up towards chest
• Tends to touch or rub particular areas
• Resists being moved
• Pulls away or fliches when touched
• Twists and turns/ tosses head/ writhes or arches back
• Has involuntary or stereotypical movements/ is jumpy/ startles or has seizures
Pain Scales for Older Children (see Chapter on Pain)

• Wong-Baker Faces Scale
• Visual Analog Scale
• Numeric Pain Intensity Scales
FLACC Scale (University of Michigan Health System)

This is a behavior scale that has been tested with children age 3 months to 7 years. Each of the
five categories (Faces, Legs, Activity, Cry, Consolability) is scored from 0-2 and the scores are
added to get a total from 0-10. Behavioral pain scores need to be considered within the context of
the child's psychological status, anxiety and other environment factors.
0 1 2
Face No particular Occasional grimace or frown, Frequent to constant frown,
expression or smile withdrawn disinterested clenched jaw, quivering chin
Normal position or
Legs Uneasy, restless, tense Kicking, or legs drawn up
relaxed
Lying quietly,
Squirming, shifting back and
Activity normal position, Arched, rigid, or jerking
forth, tense
moves easily
No cry Moans or whimpers, occasional Crying steadily, screams or sobs,
Cry
(awake or asleep) complaint frequent complaints
Reassured by occasional
Consolability Content, relaxed touching, hugging or "talking to, Difficult to console or comfort
distractible

The parents, caregivers, or even an older child can be asked to keep a journal, diary, or flow sheet
to monitor pain and other symptoms. The time, duration, character, and context in which the
symptom occurred (eg during an activity, movement, stress, other preceeding or possible
precipitating factors), pain intensity (may use simple pain scales), intervention/s used (including
medications), and response to the intervention/s can be recorded.
Pain Management
The approach to pediatric patients in palliative care uses the Analgesic Ladder Approach. This is a
stepwise approach that starts with weak analgesics [e.g., acetaminophen or nonsteroidal
antiinflammatory drugs (NSAIDs)] to strong ones (e.g., morphine, fentanyl, or hydromorphone).
Consider a multimodal approach which uses medications, psychosocial and behavioral
interventions, local anesthetics, and other pain therapies. Adequately advise and educate the
patient and family about pain management. In particular, advise them that opioid administration
titrated against significant pain does not hasten death; that it does not lose its effectiveness over
time; that the dose can be increased as needed without a fixed limit; that medications are more
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effective when given around the clock (so that pain does not have to be experienced to be
relieved); that opioids rarely cause addiction in the dying patient with pain; and that side effects
most often can be managed without an interruption in pain relief. The palliative care team should
inform patients and families that they have constant access for help with control of pain or other
symptoms.
Pharmacologic Treatment of Pain
Some basic principles in treating pain in children in palliative care are:
• Be very familiar with the therapeutic effect and side-effect profiles of the drugs.
• Use the child's previous opioid experience when deciding on a specific opioid therapy.
• Keep the plan simple and consistent. Try the oral route first. Use alternative routes when the
caregiver is unable to reliably administer oral medication or pain is worsening rapidly that the
oral route cannot provide adequate and rapid relief. Try to avoid the rectal route in patients who
are neutropenic, unless there are no other options.
• Work with the patient and family in developing the pain management approach based on pain
assessment.
• Increase the dose of the medication/s as necessary until the patient is comfortable, or until
unacceptable side-effects occur.
• Avoid multiple medication shifts. Be cost-effective.
For acute pain, rapid management and dose escalation until comfort is achieved, followed by
weaning, and institution of maintenance dose regimen if there is an underlying chronic pain.
For chronic pain, determine the pain severity: mild, moderate, or severe.
For mild pain, acetaminophen is the drug of choice. NSAIDs can also be used especially for pain
with inflammation, or pain due to bone metastasis. Although most NSAIDs have been found to be
safe in normal children, many terminally ill children may have compromised platelet numbers,
gastrointestinal, and kidney function which makes NSAID use more problematic. Cox-2 inhibitors
cause relatively less gastritis and antiplatelet activity than NSAIDs. If pain is not relieved, consider
adding adjunctive medications, opioids, or other modalities.
For moderate pain, continue acetaminophen or NSAID. Ketorolac may be tried if unable to take
PO medications. Add tramadol, or codeine. If pain is not relived, switch to low doses of oxycodone
or hydrocodone. Because there is no ceiling dose for oxycodone and hydrocodone, these drugs
can be used through the entire course of the illness. Nausea, vomiting, and constipation occur
more frequently with codeine than with oxycodone or hydrocodone. Low dose morphine may also
be used if other less potent opioids are not available.
For severe pain, consider immediate-release and long-acting morphine. Fentanyl and higher
doses of oxycodone may also be used. Begin with immediate-release opioids. During this time,
closely monitor the need to increase or decrease the dose or timing interval. After the patient's
opiate needs are determined, the dose may be converted to a long-acting opioid, with the
immediate-acting opioid reserved for breakthrough pain. Methadone is an alternative long-acting
opiate medication. Methadone may be safely used on an as-needed basis to mediate the effects of
its long and unpredictable half-life.
Fentanyl is available via transdermal delivery patch. The patient must have relatively stable opiate
needs, however, because this transdermal application takes 12 to 16 hours to reach effect once a
change is made and therefore does not lend itself to frequent dose titration changes.
For terminal pain, provide adequate doses of opioids for pain near the end of life. Parenteral
routes may be needed especially if the child is too weak to take oral medications. The dose that
provides comfort and relieves pain is the appropriate dose. One of the few pediatric studies to
examine the amount of narcotic administered to dying patients found that 94% of 199 children who
died of cancer required morphine equivalent doses of less than 3 mg/ kg/ hour. CNS metastases is
associated with the need for doses greater than 3 mg/ kg/ hour (Collins, et al, 1995).
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Side-Effects of Opioid Therapy
Monitor the patient closely for treatment-related side effectsThey are usually temporary (2 to 3
days) but may persist and cause problems.
Sedation and Somnolence. This is exacerbated if the patient was experiencing sleep deprivation
due to pain and other problems before the start of opioid therapy. A period of “catch up” sleep may
occur after the patient is comfortable. If the symptom is persistent, however, both
dextroamphetamine and methylphenidate have been shown to be effective in pediatric cancer
patients in relieving unacceptable levels of somnolence.
Histamine Release Symptoms. This occurs in about 10% of patients would experience some
flushing, itching, rash, nausea. This does not progress to anaphylaxis, and it is not an allergic
reaction. This can be treated with diphenhydramine.
Nausea and Vomiting. This is another immediate problem associated with opioid therapy. This
symptom should be treated aggressively. Antiemetics should be initiated before the development of
aversion to the opioid therapy.
Constipation. This is a chronic, persistent side effect of opioid therapy for most patients. It is best
treated prophylactically, usually with sodium docusate or senna. These medications may need to
be supplement with other treatment regimens to ensure regular bowel movements. The regimen
may need to be increased with increases in the opioid dose.
Myoclonus. This may occur at high doses of opioid therapy. This is managed by lowering the
opioid dose if possible or by use of benzodiazepines. If myoclonus is persistent or if myoclonus
progresses to seizures, try to use another class of opioids for pain relief.
Respiratory Depression. This is rare among patients receiving appropriate opioid therapy for
pain. If the physician or family is concerned that the opioid therapy could be contributing to the
patient's decreased responsiveness or lowered respirations, attempts can made to lower the opioid
dose. Taper it gradually to avoid physiologic withdrawal symptoms. Usually significant pain will
return because it is the deterioration of the patient's overall condition that is causing the problem,
and not the opioid. Administration of an opioid antagonist, such as naloxone, can cause extreme
distress and it is seldom needed.
Adjuvant Therapies
A number of adjuvant therapies are clinically effective for treatment of pain in children.
Adjuvant Therapies for Bony Metastases
Bony metastases can be managed with one of the NSAIDs, such as ibuprofen. Bisphosphonates,
such as pamidronate, have also been used for pain in adult patients, but this strategy has been
less studied in children.
Adjuvant Therapies for Neuropathic Pain
Neuropathic pain may be caused by compression or infiltration of neural tissue by tumor. It is
difficult to treat and it may be resistant to opioid therapy. Adjuvant drugs, such as tricyclic
antidepressants and anticonvulsants, can be tried. Pain and insomnia may respond to a sedating
agent, such as amitriptyline. If amitryptylline causes problematic anticholinergic side effects, such
as sedation and dry mouth, other drugs may be tried such as desipramine (which is relatively
stimulating) or nortriptyline (which is less activating). Anticonvulsants, such as gabapentin, may
also used. They are usually gradually increased to therapeutic doses to avoid adverse problems
such as sedation. Invasive modalities, such as epidural or intrathecal catheters and neurolytic
nerve blocks, may be needed for refractory cases.
Corticosteroids
Corticosteroids can be very helpful. Pain secondary to visceral distention, bony destruction, or
cerebral edema can be improved by steroids, such as prednisone or dexamethasone. Other
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positive effects can include appetite stimulation, combating nausea, and promoting euphoria.
However, these medications can lead to severe cushingoid appearance, hypertension, and glucose
intolerance and can cause dysphoria. Thus, the use of corticosteroids must be carefully
considered, and review of the patient’s past experience with these medications can be helpful in
deciding whether they should be initiated.
Adjuvant Nonpharmacologic Therapies
There are many nonpharmacologic strategies, including guided imagery, hypnosis, meditation,
acupuncture, and acupressure.
Misconceptions about Pain in Children

• Children either do not feel pain in the same way as adults, or they remember it differently.
• A valid assessment of pain and other symptoms in children is not usually possible.
• The risks of respiratory depression and other opiold-induced side effects are generally more
profound in children than adults.
• The risks of causing addiction outweigh the benefits of using opioids in children.
• Pain in pediatric patients; cannot be managed effectively due to lack of effective medications.
Analgesic Medications
Paracetamol/ Acetaminophen is the drug of choice for mild pain. It is also helps as an antipyretic
for concurrent fever. It comes in many strengths and forms for children.
NSAIDs. NSAIDs such as ibuprofen and naproxen are available “over the counter” (without
prescription). They are widely used by parents for their children. NSAIDs affect platelet and kidney
function and should be avoided or used with caution in children with platelet, bleeding, and/or
kidney problems. They can also cause gastritis and gastric ulcers and should be avoided and or
used with caution in children who have or are at risk of developing these problems. Consider
adding an H2 blocker or a proton pump inhibitor if NSAIDs are going to be used frequently or on a
chronic basis.
COX-2 Inhibitors. Selective COX-2 inhibitors cause less GI side effects than NSAIDs. Platelet and
kidney function can still be affected.
Non-Opioid Analgesics
Dose < 60 kg Dose > 60 kg
Paracetamol 10-15 mg/kg q 4 hr PO / PR 500-1000 q 6 hr PO / PR
Naproxen 5 mg/kg q 8-12 hr PO 250-500 mg q 8-12 hr PO
Ibuprofen 5-10 mg/kg q 6-8 hr PO 400-600 mg q 6 hr PO
Celecoxib 2-4 mg/kg q 12 h PO 100-200 mg q 12 hr PO
Ketorolac 0.5 mg/kg q 6-8 hr PO/IV/IM, 30 mg q 6-8 hr PO/IV/IM,
not for > 5 days not for > 5 days
Morphine. Morphine is the classic opiate narcotic to which other analgesics are compared.
Morphine provides analgesia, sedation, and diminishes anxiety by its agonist activity at mu and
kappa opioid brain receptors. Because of poor lipid solubility, only small amounts of an
administered dose enter the CNS, restricting its usefulness as a titratable sedative. It provides
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effective analgesia for 3-4 hours, and has low CNS toxicity. Morphine has a relatively slow onset (5
minutes IV, 10-15 minutes IM). It works well when combined with benzodiazepines. Side effects
include nausea, hypotension from histamine release, and respiratory depression. Children under 2
months of age are more susceptible to respiratory depression. It causes significant histamine
release that can lead to hypotension and, like all narcotics, depresses the medullary response to
hypercapnia and hypoxia. It has a prolonged half-life and decreased clearance in infants less than
one month of age.
Bolus / Raised Rate Method for Pediatric Pain Management with Morphine
Continuous Morphine Infusion with Intermittent Boluses
Start the patient with the Initial Regimen (initial bolus and continuous infusion). Check vital signs
(HR, RR, BP) q 30 min for 2 hours, then q 2 hr. To improve comfort, give a repeat bolus and/or
increase the infusion rate by 10 - 15 %. Every time a bolus is given, or the rate is increased check
vital signs (HR, RR, BP) q 30 min for 2 hours. Rate increases can be done every 1 – 2 hrs until
comfort is achieved.
Initial Regimen How to Improve Comfort
Initial Bolus Continuous Repeat Bolus Continuous
Infusion Infusion
Infants 0.03 mg/kg over 0.01 - 0.02 0.01 - 0.02 Increase rate by
< 6 months old 30 min mg/kg/hr mg/kg/hr over 30 10 – 15 %
min
Note: to discontinue infusion, decrease IV by 50 %, and add oral opioid
analgesic such as codeine 0.2 – 0.4 mg/kg, or morphine 0.04 mg/kg PO q 4hr
Between 6 0.03 – 0.08 0.02 – 0.04 0.02 – 0.04 Increase rate by
months to 1 mg/kg over 30 mg/kg/hr mg/kg/hr over 30 10 – 15 %
year old min min
analgesic such as morphine 0.04 - 0.1 mg/kg PO q 4hr
Children 0.08 – 0.1 mg/kg 0.04 – 0.05 0.04 – 0.05 Increase rate by
> 1 year old over 30 min mg/kg/hr mg/kg/hr over 30 10 – 15 %
min
analgesic such as morphine 0.1 – 0.2 mg/kg PO q 4hr
Q 4 Hourly Doses: If a continuous infusion cannot be done, particularly in resource – limited
settings, the traditional Q 4 hourly dosing schedule can still be used. Multiply the infusion rate by
the number of hours: e.g. 0.1 mg/kg/hr x 4 hrs = 0.4 mg/kg q 4 hr. Similarly increase the dose by
10-15% to improve comfort.
Always have naloxone (0.1 mg/kg) at bedside, or readily available nearby, with syringe and needle
ready. Have IV access always available. Pulse oximetry is recommended especially for infants.
Bag mask, and oxygen set up should be readily available.
Tramadol. Centrally acting drug which acts on mu opioid receptors, and inhibits norepinephine and
serotonin reuptake. It is useful for moderate to moderately severe pain.
Fentanyl. Fentanyl can be given IV/IM/PO. Its also given transdermally through pathches. The
dose of transdermal patches however may not be small enough for smaller children.When
switching to a patch, continue morphine for 12 hours to allow the fentanyl to reach therapeutic
levels (if 12hourly slow release morphine is used, apply the patch with the last dose of morphine).
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Each patch lasts 72+ hours and provides a steady release of fentanyl. There is less sedation,
respiratory depression, and constipation compared to morphine. Parents and adult family members
can easily apply it at home. Fever and external heat increases the rate of absorption- dose may
need to be decreased if side effects occur. No dose adjustment is usually needed for kidney failure.
Oxycodone. Oxycodone is available in immediate release (4-6 hourly) and prolonged release (12
hourly) oral forms. It may be useful for children who cannot tolerate morphine. The prolonged
release tablets should not be crushed or broken.
Opioid Analgesics, Sedatives, and Hypnotics

Dose # Onset
Drug Note Route Duration Schedule
(mg/kg) (minute)
Opioid Analgesics
Fentanyl Initial dose 1 IV, IM 1-2 1-2 min 20-30 min Q1-2hr
(AW) mcg/kg, then mcg/kg
titrate in 1
mcg/kg doses
2-4 Qhour
mcg/kg continuous
infusion
(100, 200, 300, Oralet 5-15 5-15 min 60-90 min Q1-2hr
400 mcg), max mcg/kg
400 mcg
Alfentanil does not IV 5 mcg 1-2 min 20-30 min Q1-2hr
(AW) accumulate, may
rebolus
Morphine (AW) IV, IM 0.08- 0.1 5-10 min 2-4 hrs Q2-4hr
IV, SC 0.03-0.05 Qhour
continuous
infusion
PO 0.1-0.3 2-4 hrs Q2-4hr
PO, long 0.2-0.6 8-12 hrs Q12hr
acting
Oxycodone PO 0.1 4-6 hours Q4-6hr
(AW)
PO, long 0.2 12 hours Q12hrs
acting
Tramadol (A) PO,IV,IM 0.5 60-90 min 6 hours Q6hrs
Butorphanol (A) IN 1 spray 5-10 min 2-4 hrs Q4-8hr
Sedatives and Hypnotics
Short Duration Agents
Midazolam (S†) hypotension IV,IM 0.05-0.1 2 min 30 min Q1-2hr
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. difficult to titrate IN 0.2-0.3 10-15 min 45 min Q1-2hr
. PO 0.5 15-20 min 45 min Q1-2hr
Thiopental titrate in 1 mg/kg IV 3-5 30-60 sec 15 min Qhr,

(H) doses continuous
Nitrous Oxide Demand valve Inhalation 50:50 mix 1-2 min . For short
(S,A) mask. Older N2O:O2 durations
than 8 years. only
Intermediate Duration Agents
Diazepam IV ,IM 0.05-0.2 2-5 min 1-2 hours Q2-4hr

(S†)
PO 0.1-0.8 Q6-8hr
Pentobarbital Titrate in 1 IV, IM 2-5 2-5 min 30-60 min Q1-2hr

(H) mg/kg doses
Long Duration Agents
Chloral Hydrate higher doses PO, PR 20-50 30-60 min 3-4 hrs Q4-8hr
(H) commonly used. mg/kg
Ketorolac IM,IV,PO 0.5 15-30 min 2-4 hrs Q6hr
(A)
Butorphanol (A) IN 1 spray 5-10 min 2-4 hrs Q4-8hr
Dissociative Agent
Ketamine (SAH) requires IM 4 5 min 30-60min See notes

atropinization IV 1-2 1-2 min 20-40min below
IV over 1-2 min
S - sedative A - analgesics H – hypnotics † reversible with flumazenil
W - reversible with naloxone # - mg/kg unless otherwise indicated
Other Common Drugs for Pain and Other Symptoms (Frager, 1999; Jassal, 2006)
Psychostimulants
Methylphenidate or Dextroamphetamine
Usual initial dose of 2.5—5 mg or 0.1-0.2 mg/kg • Helpful for counteracting opioid sedation.
q 4 hr PO q am & noon • Helpful for resolving depression rapidly,
Usual maximum dose of 20 mg increase gently especially if prognosis is very limited.
as tolerated by 0.05—0.1 mg/kg per dose • Use with care: can exacerbate
dysphoria/agitafion.
• Schedule for time when patient wishes to
be awake.
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Tricyctic Antidepressants (Shorter half-life in children may require bid dosing.)
Amitriptyline • Useful for neuropathic pain, particularly the
Start at 0.2 mg/kg PO qHS, advance to 0.5-1.5 dysesthetic kind.
mg/kg qHS or divided to BID. • Can enhance sleep, if given HS.
Desipramine • Less sedating than amitriptyline
Same as above
Nortriptyline • Avoid carbamazepine as a co-adjuvant if
Same as above bone marrow suppression is a concern
Imipramine
Same as above
Serotonin Selective Re-uptake Inhibitors
Fluoxetine • Monitor for adverse reactions anxiety,
0.2-0.4 mg/kg qHS insomnia, drowsiness, headache
Anticonvulsants (Useful for neuropathic pain, particularly the lancinating kind.)
Phenytoin • Useful in a pain crisis; patient can be
5 mg/kg/dose bid PO/IV increase as tolerated rapidly “loaded” IV/PO (maximum = 1 g).
to relief; Loading = 15 mg/kg IV (if PO, divide in Clinical and cardiac monitoring with IV load.
3 doses); Maintenance= 5 mg/kg
Carbamazepine • Monitor carefully for sedation, especially if
5 mg/kg/dose PO to maximum initial dose of bid combining with tricyclic antidepressants
200 mg, increase by 2—5 mg/kg/dose as • Bone narrow depressant
tolerated to relief
Gabapentin • Minimal side effects or drug interactions
2-4 mg/kg/dose PO to maximum initial dose of
300 mg increase by 2-4 mg/kg/day as tolerated
to relief. Start qd increase to bid, then tid
Corticosteroids
Dexamethasone In acute pain crisis, can be “loaded” and
“load” (for crisis)= 1 mg/kg PO/IV then decreased to maintenance dose.
Maintenance varies 0.01- 0.1 mg/kg PO/IV bid- • May stimulate appetite, improve mood
qid (also dysphoria).
• Long term adverse effects.
Local Anesthetics
Mexiletine
1 mg/kg PO bid, then 1 mg/kg q 2-3 days. • Monitor blood levels, EKG at higher doses.
Increase as tolerated to relief. max=900 mg/day • Gastrointestinal side effects.
Benzodiazepines
Clonazepam Clonazepam may be helpful with anxiety.
0.01 mg/kg/dose PO q 12 hours Specifically used for opioid related
Usual initial maximum = 0.5 mg/dose, then myoclonus.
titrate as needed
Lorazepam Lorazepam and diazepam may be helpful
0.02-0.05 mg/kg/dose IV/PO/PR/SL q 8 hours with muscle spasm, anxiety, nausea
(particularly anticipatory).
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Diazepam Diazepam irritating via peripheral IV. Use
0.05-0.25 mg/kg/dose PO/IV/IM/PR q 8 hours diluted via large vein. For muscle spasm,
anxiety, nausea (particularly anticipatory).
Neuroleptics
Halopericlol • Used to relieve delirium, nausea, and
0.015-0.025 mg/kg/dose PO/IV/SC q 8-12 hrs vomiting or to produce sedation.
IV/SC infusion: 0.03-0.05 mg/kg/day • Use with care: can cause dystonia
(reversible with diphenhydramine 1 mg/kg)
Chlorpromazine • Use with care: can cause dystonia
0.5 mg/kg/dose PO q 8-12 hours (reversible with diphenhydramine 1 mg/kg)
Muscle Relaxants
Baclofen • Can increase the dose by 5 mg/dose as
5 mg/dose PO bid. tolerated
increase by 5 mg/dose as tolerated. • Can be helpful neuropathic pain and
Can also be given as epidural. spasticity.
• Can cause sedation: may improve with
time.
• Use with care: abrupt withdrawal
symptoms such as hallucinations, seizure,
and anxiety.
Biphosphonates (Because of limited pediatric data with biphosphonate, there are no specific
guidelines for children. Doses are usually extrapolated from adult experience.)
Pamidronate For treatment of hypercalcemia. Also used
IV by infusion q 4 weeks. Pediatric dose for bone pain. Patients can be eucalcemic
estimated from usual adult dose of 60—90 mg and safely receive treatment. Monitor
(approximately 1—2 mg/kg/dose) electrolytes Ca and PO4
Alendronate Take with plain water only, 1/2 hour before
PO qd or q week. Pediatric dose estimated the first food, drink, or medication of the day.
from usual adult dose of 35—70 mg Patients should then stay upright with no
(approximately 0.5 mg/kg/dose) weekly or food, drink or medication for a further 30+
5-10 mg/daily minutes (Increased risk of esophageal
irritation/erosion with supine position.)
Cholinergic Agents
Bethanechol • Used to manage opiod-induced urinary
retention.
PO. Initial dose of 2.5-5 mg (up to 10 mg in • Preferable to give on an empty stomach as
adults). *Up to 4 times daily. Repeat hourly until may cause nausea or vomiting
void or maximum of 50 mg or toxicity reached *(Cumulative maximum of 50 mg with initial
titration, then minimal effective dose can be
given 3—4 times/24 hours.)
SC. Initial dose of 1mg (2.5 mg in adults). • More adverse effects with SC route.
Repeat q 5—30 min until void or maximum of Cumulative maximum of 10mg with initial
10 mg or toxicity reached. titration, then minimal effective dose can be
given 3—4 times/24 hours.
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Anti-Cholinergic Agents
Hyocine hydrobromide/ Scopolamine • reduces oral and airway secretions; mildly
Patch: 2-3 yrs (1/4 patch); 3-9 yrs (1/2 patch); sedating
>10 yrs (1 patch) • subcutaneous tissue may get inflamed
SC/IV infusion: 40-60 mcg/kg/day after 24-48 hrs; move sites regularly
Hyocine butylbromide • reduces oral and airway secretions; GI
0.2-0.4 mg/kg/dose PO/SC/IM/slow IV qid antispasmodic; mildly sedating
Glycopyrronium
30-100 mcg/kg/dose PO tid-qid
Anti-Histamines
Dimenhydrinate • for nausea, vomiting, vertigo, motion
0.5-1 mg/kg/dose PO tid-qid sickness
Meclizine • for nausea, vomiting, vertigo, motion
0.125-0.5 mg/kg/dose PO tid-qid sickness
Diphenhydramine • for allergic reactions, pruritus, vertigo
0.5-1 mg/kg/dose PO tid-qid
Buclizine • for nausea, vomiting, motion sickness
0.5-1 mg/kg/dose PO bid • has been combined with B vitamins +/- iron
for use as ‘appetite enhancers’
Nebulized Agents
Salbutamol/ Albuterol • may help reduce dyspnea, especially if
Nebulizer solution: <5 yrs (2.5 mg); 5-12 yrs (5 with bronchospasm
mg); >12 yrs (5-10 mg) q3-6 hrs
Ipratropium • may help reduce dyspnea; may be used
Nebulizer solution: <1yr (125 mcg); 1-5 yrs (250 with salbutamol/ albuterol
mcg); 5-12 yrs (500 mcg); >12 yrs (500 mcg)
q6-8 hrs
Topical agents
Capsaicin • Capsaicin can help alleviate peripheral
Topical. tid. Start at 0.025; can increase to neuropathic pain.
0.075 • Capsaicin causes initial discomfort
burning) with application; may be prevented
by using EMLA or lidocaine.
EMLA • May be helpful for neuropathic pain from
Topical Usually q 1—4 hours cutaneous causes (e.g.,
herpetic neuralgia)
• Do not use on skin erosions.
Anti-Diarrheal Agents
Loperamide • Given after each episode of loose stool
PO: 2-5 yrs (1 mg tid); 6-8 yrs:(1 mg qid- 2 mg
bid); 9-12 yrs (2 mg tid); >12 yrs (2 mg q4-6 hr);
or 0.05-0.08 mg/kg tid-qid
Laxatives
Senna • Stimulates peristalsis. As a liquid, it can be
Comes in different formulations; follow product mixed and given with lactulose. Onset of
recommendations action: 6-12 hrs.
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Bisacodyl • Stimulates peristalsis. Given orally or
PO/PR: <5 yrs (2.5 mg); 5-10 yrs (5 mg); >10 yr rectally (useful if child cannot take oral
(5-10 mg) agents). Onset of action: 6-12 hrs.
Glycerine • Softens stool by osmotic action, and also
Suppository: infant/pediatric suppository; >12yr lubricates.
and adult suppository
Use half or whole suppository depending on
age and response
Docusate • Surfactant. Acts like a detergent and

Given in 1-4 divided doses: <5 yrs (10-40 increase water penetration of the stools.
mg/day); 5-12 yrs (40-150 mg/day); >12 yrs Used as monotherapy or in combination with
(100-500 mg/day) a peristalsis stimulant. Onset of action: 1-3
days.
Lactulose • Osmotic effect on the small bowel and
PO: <1yr (2.5 g); 1-5 yrs (5 g); 6-12 yrs (5-10 retains water in GIT. A common first line
g); >12 yrs (10-20 g) treatment for children. Onset of action: 1-2
days.
Magnesium Hydroxide • Saline laxative that has an osmotic effect
PO: <5 yrs (300-600 mg); 5-12 yrs (600- on bowels, increasing water secretion and
1000mg); >12 yrs (1-2 g) peristalsis. Ensure adequate water intake
and hydration. Potent action- used only if
other milder options fail. Onset of action: 1-6
hrs.
Sodium Picosulphate • Peristalsis stimulating. Used for very
PO: <5 yrs (2.5 mg); 5-12 yrs (2.5-5 mg); >12 difficult cases. Onset of action: 4-12 hrs.
yrs (10-20 mg)
Anti-Ulcer and Antacid Agents
Maalox • Not adequate for at-risk patients, or for
(comes in different formulations PO) actual treatment of gastritis, GERD, and
ulcer; But provides additional relief when
added to H2 blocker or proton-pump
inhibitor agents
Ranitidine • H2 blocker
1.5-3 mg/kg/dose PO/IM/slow IV tid-qid
IV infusion: 0.125-0.25 mg/kg/hr
Omeprazole • Proton-pump inhibitor
0.4-0.8 mg/kg/dose PO qday
5HT3 Receptor Antagonists
Ondansetron
0.15 mg/kg/dose PO/IM/slow IV q8-12 hrs
Pro-Motility Agents
Metoclopramide • Monitor for extrapyramidal side effects
0.05-0.1 mg/kg/dose PO/IV/IM tid
Domperidone
0.2-0.4 mg/kg/dose PO tid-qid
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Psychosocial and Child Life Interventions
• Psychosocial and child life interventions to provide comfort and help in the medical and
palliative care of children with advanced disease.
• Do an initial comprehensive assessment. This should include a developmental screening, and a
determination of the parents’ preferences, concerns and suggestions. Follow-up evaluations
monitor the response to interventions. Regularly advice and counsel the parents. Encourage
parents to express their ideas and concerns in an open and non-threatening relationship.
• Provide a safe, comfortable and non-threatening environment to promote the child’s
development. Depending on the child's developmental stage and medical condition, help create
a comforting environment- eg mirrors, toys, dolls, music boxes, tape recorders, pictures, and
even pictures and recordings of the child's home and family.
Infant, Toddler & Preschool Children

• Interventions and activities aim to provide comfort and facilitate medical and palliative care.
• Interventions may include reading a book, sitting with a child, comforting a child; or engaging
the child in a variety of play experiences like medical play, painting, building blocks or playing a
game. Allow the child to choose their play. Determine which play the child likes to do at home.
• Medical play and supervised play with medical equipment helps young children feel more
involved in their care and cope more effectively with hospitalization.
School Age Children

• Interventions and activities should be relaxed, informal, and non-threatening. They aim to
facilitate children's adjustment to the illness and the ongoing medical care.
• Activities related to the hospital and the ongoing medical care, allow a child to learn about the
medical environment and care, as well as to express their feelings about it.
• Determine which play the child likes to do at home. Interventions may include the use children's
books and stories, play with doll’s and toys relating to medical routines, video shows about the
hospital and medical care, and medical play with medical equipment.
• Determine the need for and help arrange for rehabilitation and special education programs.
• Schoolwork provides continuing educational benefits and also provides a sense of normalcy.
Adolescents
• Interventions may use a combination of recreational and therapeutic activities that focus on the
primary needs of teenagers: peer socialization, independence, privacy, and self-esteem.
• Interventions may include music, arts and crafts projects, informal discussions, group activities
including games and cooking, tutoring and schoolwork, and opportunities to talk about their
illness and medical care.
• Interventions can help the patients focus on the positive aspects of their experiences; and
maximize the opportunities for emotional and social growth and development.
Medical Procedures
• The role of the medical team and parents is to be honest, using age appropriate language every
step of way during their hospital stay. To be effectively prepared for a medical procedure,
children need to know what to expect.
• Psychosocial, child life, and therapeutic play interventions help ease anxiety, fear and stress.
• Children can learn about procedures by playing with toy or actual medical equipment and
supplies. Play therapy allows children to act out their feelings and concerns. Using syringes
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filled with water for target shooting, playing with inflated surgical gloves, and painting pictures
with gauze are some ways to help children become familiar with medical equipment.
• Toys that can provide distraction (e.g. glitter wands, toys that move or light up), reading books,
guided imagery, music therapy, relaxation and breathing techniques are some of the many
coping strategies that can be used during medical procedures.
• Encourage the child to express their feelings, teach developmentally appropriate ways of
coping, and help them gain a sense of control.
Sibling Support
• Assist parents in meeting the needs of brothers and sisters. A sibling of a hospitalized child may
experience the same emotions and concerns as their hospitalized sister or brother.
• They may feel neglected and isolated when all of the family attention is on the "sick" child.
They may even think it is their fault that their sister or brother is sick.
• As long as the patient is stable, siblings are encouraged to visit during hospitalization. Help
prepare brothers and sisters for a visit; plan and facilitate the visit at an emotionally and
developmentally appropriate level.
• Sibling sessions to help them understand what is going on with their brother or sister.
Bedside Activities
• When a child is unable to come to the various activities, due to isolation precautions or activity
restrictions, provide bedside recreational and therapeutic interventions.
Group Activities
• Art, recreational activities, special community group presentations and seasonal celebrations.
• Artists and performers including dancers, musicians, visual artists, puppeteers, storytellers - to
provide a range of helpful activities. Children unable to join in the group activities may be visited
in their rooms. Artists should be first given basic instructions in child development, the special
needs and concerns of children with severe disease, safety issues, communication skills, and
the needs of parents and family members.
Playrooms
• Playrooms provide a comforting atmosphere for psychosocial and child life activities.
• Playrooms usually provide toys, games, books, wagons and ride-on cars, and even a fish tank.
• Medical procedures should not be done in playrooms. However, the medical staff is always
welcome and encouraged to visit their patients while they play.
Spiritual Care and Support
Just like adults, older children search for meaning and for a deeper understanding of their
experiences. Spirituality can provide this sense of meaning, direction, and order in life. A child’s
spirituality is usually based on their relationships; and the spirituality of their parents and other
older significant family members. Children will usually need help and guidance in applying spiritual
and religious concepts and ideas to their experiences. Children can experience spiritual distress
and suffering. Appropriate spiritual counseling and support should also be offered to children.
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11 Palliative Care of Geriatric Patients
The most common causes of death in geriatric patients include malignant neoplasms,
cardiovascular disease, chronic lower respiratory disease, influenza and pneumonia, diabetes,
Alzheimer's disease, nephritis, accidents, and septicemia. Causes of death in geriatric patients are
usually related to exacerbations of chronic disease, not problems that are completely unexpected
or acute as seen in younger persons. Dying may be a prolonged process in older adults (eg,
progression of heart failure vs acute myocardial infarction); and these patients experience many
problems during the course of their life limiting illness.
Lack of appropriate palliative care results in pain, distress, and suffering that could have been
preventable and/or controllable. Inadequate treatment of pain occurs as much as half of patients
with cancer or other chronic diseases. The palliative care physician should address the physiologic,
psychologic, social, and spiritual needs of geriatric patients. Physicians should respect the patient
and family’s preferences for end-of-life care, and address their ethical concerns. Prognostication
can be difficult in some cases. Instead of a steady and predictable decline, a 'roller-coaster' effect
may be observed- characterized by many exacerbations, followed by recoveries, but each time, a
gradual decline in clinical status and capacity occurs. Physiologic reserve and the capacity to
recover from illness, decreases with age, and ends with a final illness episode from which the
patient can no longer recover and dies. Some patients welcome death as a way to be with loved
ones who have died, as a way to enter a better life based on their spiritual beliefs, or as a way to
be free of suffering.
In addition to the patient’s life threatening illness, problems and issues due to aging and chronic
diseases can cause distress, suffering, debility, and adversely affect quality of life. The most
common chronic diseases affecting the elderly are arthritis, hypertension, hearing impairment,
heart disease, and cataracts. Palliative care specialists should address not only issues associated
with the dying process, but also problems due to chronic diseases.The altered presentation of
symptoms and disease in older adults may prevent prompt management of symptoms, and
problems. Palliative care specialists should appreciate the various physical, psychosocial, and
spiritual problems of older adults; and also understand how palliative care might be handled
differently in this population.
Common Symptoms and Problems

Symptoms and problems may sometimes present differently in geriatric patients. Physicians should
be able to recognize and correctly interpret subtle symptoms and symptom changes that may
indicate progression of an existing chronic illness or an intervening acute problem or illness. For
geriatric patients receiving palliative care, not recognizing conditions that could be treated and
problems that can be relieved, can result in unnecessary suffering and deterioration in the quality
of life. Vague and ambiguous symptoms and changes are more common in older patients than
acute unambiguous ones. Such symptoms are harder to recognize and interpret. Family caregivers
may report these vague changes- eg 'There’s something different about grandmother.' The
patient’s nurse or caregiver also may notice subtle changes that are difficult to describe.
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Confusion and Delirium
Mental status may be altered, with a change from baseline and a fluctuating level of
consciousness. Although many patients may have some degree of cognitive impairment, a rapid
change in mental status should be evaluated for reversible causes and treated appropriately.
Common causes include drug toxicity, cerebrovascular disease; systemic illness, especially heart
failure, infection, or poorly controlled blood glucose; untreated thyroid disease; vitamin deficiency,
especially of vitamin B12; decreased sensory input and finally withdrawal from substances of
addiction. Confusion poses a special set of problems for older adults who are dying. New-onset
confusion needs to be evaluated. For example, hypoglycemia may not be quickly recognized until
blood glucose is dangerously low; this is because the usual adrenergic symptoms of tachycardia
and diaphoresis may be blunted, and and confusion may be the only noticeable symptom. Delirium
and acute confusion, which occurs in 20% to 50% of all hospitalized older patients, can be due to
various causes including cognitive restriction, physiologic instability, or metabolic problems. It is
more likely to occur in patients 80 years of age or older, in men, in patients with preexisting
dementia, in those with limited social contacts, and in patients with two or more chronic illnesses.
Vision and Hearing Impairment

Vision and hearing impairment affect many older patients. Function and mobility can become
impaired. Communication can become difficult, and the patient may not understand or may not be
understood. Vision and hearing impairment can lead to sensory deprivation, isolation, and cause
cognitive problems. Visual and hearing acuity should be routinely assessed, and adaptive
equipment should be provided if needed.
Vision Impairment
Visual impairment is acuity of 20/40 or worse. Severe impairment or legal blindness is acuity of
20/200 or worse.
Common Causes
Error of Refraction: most common cause
Cataracts: opaque lens on exam (risk factors: age, sun exposure, diabetes, smoking, steroids)
Age-Related Macular Degeneration: atrophy in central macular region, white-yellow patches
(drusen), hemorrhage and scarring (advanced cases), (risk factors: age, sun exposure, family hx)
Diabetic Retinopathy: microaneurysms, hemorrhages, ischemia, proliferative retinopathy
Glucoma: Increased intraocular pressure (>21 mm Hg), optic cupping and atrophy, loss of
peripheral visual fields (risk factors: age, family history, borderline high eye pressures
Evaluation
Visual Acuity: Near vision can be checked using standard vision cards (at 12-16 in.), or by asking
the patient to read printed material. Far vision can be checked using standard Snellen wall charts
(at 20 ft.).
Visual Fields: confrontation test
Tonometry using a standard tonometer
Ophthalnoscopic evaluation
Management
Specific ophthalmological interventions: photocoagulation, cataract and glaucoma surgery, lazer
treatment, glaucoma medications
Low vision strategies: better lighting, increased color contrast, larger print, magnification,
supplement with auditory and tactile stimuli
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Environmental modification: color contrast, reduce glare (light diffuser, floor lights), motion sensors
for light switches,
Low vision aids and assistive devices: various optical and non-optical devices (eg computer
programs to enlarge text)
Glycemic control for diabetic retinopathy
Hearing Impairment
The most common sensory impairment in older people.
Types
Sensorineural hearing loss: cochlear and retrocochlear problem, impairs both bone and air
conduction, causes include: aging, syphilis, trauma, meningitis, stroke, acoustic neuroma,
Meniere’s disease. Presbycusis is sensorineural hearing loss associated with old age that presents
with high-frequency loss, impaired speech discrimination, and recruitment (increased sensation of
loudness)
Conductive hearing loss: problem in sound transmission to the inner ear, bone conduction is better
than air conduction, causes include: external and middle ear problems
Central auditory processing disorder: loss of speech discrimination (such as seen in dementia),
involving the CNS
Based on Severity of Hearing Loss:
Mild (25-40dB, cannot understand normal speech),
Moderate (41-55 dB, cannot understand loud speech),
Severe (56-80dB, can only understand amplified speech using hearing aids and devices),
Profound (81dB or more, cannot understand amplified sound)
Evaluation
Observe for problems during interview, and ask about hearing problems.
Hearing may be assessed using the whisper test, and other screening tools, such as the hearing
handicap inventory.
Whisper Test
Ask the patient to occlude one ear canal with a finger. From a distance of 2 ft. on the side of the
other ear, whisper a 3 syllable word (e.g. “ninety nine”) and ask the patient to repeat it. If the
patient cannot repeat it, whisper a different 3 syllable word (e.g. “thirty six”) and ask the patient to
repeat it. Repeat the procedure with the other ear. Document the results.
Hearing Handicap Inventory in the Elderly- Screen (Ventry and Weinstein, 1983)
Choice of Answers: Yes (4 pts), Sometimes (2 pts), No (1 pt).
Questions:
(1) Does a hearing problem cause you to feel embarrassed when meeting new people?
(2) Does a hearing problem cause you to feel frustrated when talking to members of your family?
(3) Do you have difficulty hearing when someone speaks in a whisper?
(4) Do you feel handicapped by a hearing problem?
(5) Does a hearing problem cause you difficulty in visiting friends, relatives, or neighbors?
(6) Does a hearing problem cause you to attend religious/church services less often than you
would like?
(7) Does a hearing problem cause you to have argument with family members?
(8) Does a hearing problem cause you to have difficulty when you are listening to the TV or radio?
(9) Do you feel that any difficulty with your hearing limits or hampers your personal or social life?
(10) Does a hearing problem cause you difficulty when in a restaurant with relatives or friends?
Scoring:
0-8, no perceived handicap; 10-22, mild to moderate handicap; 24-40, significant handicap.
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Audiometry
Tests for hearing loss- intensity measured in decibels (dB) across frequencies in Hertz (Hz)
Management
Treat contributing factors: cerumen impaction, medication ototoxicity (eg aminoglycosides, loop
diuretics, chemotherapy such as cisplatin)
Advice family on how to communicate best with the hearing impaired: stand 2-3 ft away, have the
person’s attention, use lower pitched voice, speak slowly and clearly, rephrase instead of
repeating, pause at the end of each phrase and idea, a wall behind the person may help by
reflecting back the sound
Hearing Aids
Assistive hearing devices: usually use a microphone, amplifier, and speaker/ earphones/ or
headphones.
Communication via computer devices, and telephone device for the deaf (TDD)
Speech/ Lip reading, hearing rehabilitation, and/or sign language: for profound hearing loss
Dyspnea and Fatigue

Many older people suffer from dyspnea and fatigue. Many have chronic heart and lung diseases.
Myocardial infarction may present as an acute onset of dyspnea and fatigue, instead of chest pain
or diaphoresis. Dyspnea and an increased respiratory rate, exceeding 24 breaths per minute can
be an altered presentation of pneumonia, even in the absence of cough or fever. A sensation of
fatigue and inability to perform one activity of daily living can be an early indicator of pneumonia.
For the older person who has very limited mobility, inability to retain a sitting posture independently
also is indicative of pneumonia. Fatigue accompanies the worsening of heart failure.
Sleep Problems
Older adults have altered sleep-wake cycles, usually falling asleep earlier and rising earlier in the
morning. Because they have less stage 4 sleep, they may feel less rested in the morning. Daytime
napping is common in older adults, but excessive napping may disrupt nighttime sleep. Try to
obtain a sleep history. Nighttime hypoxia resulting in restless sleep or paroxysmal nocturnal
dyspnea, can be related to worsening or developing illness, such as obstructive lung disease or
heart failure.
Nutritional Problems
Many older patients are malnourished. Loss of appetite or early satiety is not always simple
anorexia, but may mean other problems. Protein-calorie and micronutrient malnutrition leads to
several problems including fatigue, loss of function, prolonged hospitalization, recurrent
exacerbations, pressure ulcers, and increased morbidity and mortality. The cause of malnutrition is
usually multifactorial and can include anorexia, altered thirst and hunger sensation, depression,
dementia, social isolation, poverty, pain, dysphagia, constipation, alcohol or substance abuse,
immobility, medications, and dental problems. Unexplained weight loss should prompt an
evaluation. Individuals heart failure, often experience the sensation of early satiety with decreased
appetite before fluid accumulation becomes clinically apparent. Pneumonia also presents in some
individuals with diminished appetite. In late-stage dementia, a wasting phenomenon with limited
intake usually occurs. For the person with dementia, minimal or negative interaction, no assistance
at meals, no adherence to prior mealtime routines, lack of adaptive equipment, and an overly
stimulating dining area can lead to a decreased food intake. A diminished sense of smell and taste
can cause a lack of interest in eating. Vitamin and mineral deficiencies may occur. Vitamin D
deficiency can increase the risk of hip fractures. Zinc deficiency plays a role in various syndromes,
385
such as immune deficiency, cognitive dysfunction, cachexia, muscle weakness, and impaired
wound healing.
Dehydration
Dehydration is common. It is due to several factors which include: a decreased muscle mass and a
consequent lack of intracellular water; a blunted thirst response; an inability to concentrate urine
even if already dehydrated; various problems that result in an increased metabolic state; and
problems such as fever, infection, vomiting, or diarrhea.
Gastrointestinal Problems
Altered gastrointestinal (GI) status caused by low-level dehydration, slower peristalsis, the
presence of chronic neuromuscular disease such as Parkinson's disease, amyotrophic lateral
sclerosis, muscular dystrophy, and even lack of mobility related to osteoarthritis predisposes the
older adult to constipation. The use of NSAIDs for arthritis makes the individual with this diagnosis
more prone to GI bleeding. Upper or lower GI bleeding may present insidiously with signs of
dehydration and 'crampy' abdominal pain that is difficult to localize. GI obstruction also presents
without the usual boardlike abdomen, but instead with cramps, stringy stool or diarrhea, vague
complaints of feeling 'unwell,' and dehydration. For patients who are receiving opiates, it is
important to monitor of bowel sounds and stool history; and to use prophylactic laxatives.
Urinary Incontinence
Many older patients suffer from urinary incontinence. This is due to various causes, such as pelvic
floor dysfunction, perineal problems and injury, sphincter dysfunction, bladder and prostate
problems. Other contributing factors include urinary tract infections, confusion and cognitive
impairment, medication/s, alcohol abuse, congestive heart failure, immobility, hyperglycemia,
catheter induced bladder dysfunction, constipation and fecal impaction. Physicians should always
ask patients about incontinence problems, especially since patients do not usually mention this
problem, even when it is already causing significant discomfort, stress, and difficulty.
Infection and Fever

Older patients have 50% of the immunologic function observed in 20-year-olds, and thus should be
treated as an immune-compromised population. Because of lower basal metabolic rates, older
adults have lower core temperatures. Also, a sluggish temperature feedback loop makes fever an
inaccurate measure for the severity of infection. Because many older persons are self-treating with
NSAIDs for painful musculoskeletal conditions, their inflammatory response is altered.
The most common infections in the older population form the acronym PUS: Pneumonia presenting
with increased respiratory rate, decreased appetite, and functioning; Urinary tract infections
presenting with increased confusion and falls; and Skin infections related to vascular disease and
pressure ulcers.
Anxiety and Depression

Many older patients are afraid of dying alone or being abandoned. Problems with mobility and
functional decline may limit their ability to maintain social support networks. Many patients do not
want to be a burden to their family and to others, and they may not express their problems or those
of their spouse until the situation becomes worse.
Depression is common in older patients. Preexisting depression may complicate assessment and
treatment. It may manifest as an increased disability beyond what would be expected from a given
illness. Screening for depression should be done with an instrument that does not focus on
physical symptoms, which could be due to chronic illness. Management includes pharmacologic
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and psychosocial interventions (see section on depression).
The Geriatric Depression Scale (GDS) (Sheikh and Yesavage, 1986)

The GDS is an appropriate screening tool that can assist in determining the degree of depression.
Choose the best answer (YES/NO) for how you have felt over the past week:
1. Are you basically satisfied with your life?
2. Have you dropped many of your activities and interests?
3. Do you feel that your life is empty?
4. Do you often get bored?
5. Are you in good spirits most of the time?
6. Are you afraid that something bad is going to happen to you?
7. Do you feel happy most of the time?
8. Do you often feel helpless?
9. Do you prefer to stay at home, rather than going out and doing new things?
10. Do you feel you have more problems with memory than most?
11. Do you think it is wonderful to be alive now?
12. Do you feel pretty worthless the way you are now?
13. Do you feel full of energy?
14. Do you feel that your situation is hopeless?
15. Do you think that most people are better off than you are?
Functional Capacity
Inability to perform usual activities can be a significant problem. Fatigue may be due to several
possible causes, such as anemia, thyroid disease, cardiovascular or pulmonary insufficiency, or
infection. Evaluate the major categories of functional ability: activities of daily living (ADLs) and
instrumental activities of daily living (IADLs). ADLs are self-care activities that a person must
perform every day (eg, eating, dressing, bathing, transferring between the bed and a chair, using
the toilet, controlling bladder and bowel). Patients unable to perform these activities and obtain
adequate nutrition usually require caregiver support 12 to 24 hours/day. IADLs are activities that
enable a person to live independently in a house or apartment (eg, preparing meals, performing
housework, taking drugs, going on errands, managing finances, using a telephone). Patients
become more dependent as the need for help in these activities increases.
Functional Assessment: ADLs and IADLs

Katz Index of Activities of Daily Living (ADLs)
(Katz et al, 1963) Score
Bathing (sponge bath, tub bath, or shower)
-- Receives no assistance- eg gets in and out of tub by self 3
-- Receives assistance in bathing in only one part of body, such as back or leg 2
-- Receives assistance in bathing in more than one part of body, or is not bathed 1
Continence
-- Controls urination and bowel movement completely by self 3
-- Has occasional “accidents.” 2
-- Needs supervision to keep urine or bowel control, uses catheter, or is incontinent 1
Dressing
-- Gets clothes and gets completely dressed without assistance 3
-- Gets clothes and gets dressed without assistance except in tying shoes 2
-- Receives assistance in getting clothes or getting dressed or stays partly or 1
completely undressed
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Feeding
-- Feeds self without assistance 3
-- Feeds self except for assistance in cutting meat or buttering bread 2
-- Receives assistance in feeding or is fed partly or completely by enteral tubes or 1
parenteral nutrition
Toileting
-- Goes to toilet, cleans self, and arranges clothes without assistance (may use 3
assistive devices such as walker, cane, etc; and may use bedpan or commode at
night but empties it in the morning)
-- Receives assistance in going to toilet, cleaning self, or arranging clothes after 2
elimination or receives assistance in using bedpan or commode at night
-- Does not go to toilet for the elimination process 1
Transferring
-- Moves in and out of bed or chair without assistance (may use assistive device for 3
support such as cane or walker)
-- Moves in and out of bed or chair with assistance 2
-- Does not get out of bed 1
Total Score
Lawton Index of Instrumental Activities of Daily Living (IADLs)

(Lawton, 1969) Score Score
Uses the telephone Does own handyman work
-- Without help 3 -- Without help 3
-- With some help 2 -- With some help 2
-- Completely unable to use 1 -- Completely unable to do 1
handyman work
Gets to places out of walking Takes own medication
distance -- Without help (in the right 3
-- Without help 3 dose at the right time)
-- With some help 2 -- With some help (takes 2
-- Completely unable to travel 1 medicine if someone prepares it
without special arrangements or reminds them)
-- Completely unable to take 1
own medicine
Goes shopping for groceries Does own laundry
-- Completely unable to do any 1 -- Completely unable to do 1
shopping laundry
Prepares own meals Manages own money
-- Completely unable to prepare any 1 -- Completely unable to handle 1
meals money
Does own housework
-- Without help 3
-- With some help 2 Total Score
-- Completely unable to do 1
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Falls and Problems with Gait and Balance
Falls are often manifestations of other problems. Evaluation should include cardiac,
musculosketelal, neurologic, sensory (vision and hearing) functioning, continence, and
pharmacologic review. Falls will continue until contributing problems are adequately managed.
Lower extremity weakness can be assessed by asking the patient to stand from a sitting position
with arms folded across the chest; and repeat this task five times as fast as he/she can. Time > 10
seconds suggests lower extremity weakmess. Gait and balance can be assessed by asking the
patient to walk 12 ft at his/her normal pace, turn, and return without stopping. Balance can be
tested using the Progressive Romberg. Ask the patient to stand for 10 seconds with eyes open and
then closed in 3 different positions: feet together (Romberg stance), one foot halfway in front of the
other (semi-tandem stance), and the heel of one foot against the toe of the other (tandem stance).
Adverse Drug Reactions

Adverse drug reactions (ADRs) occur frequently, and usually present with altered mental or
functional status. Adverse drug reactions can be caused by 'polypharmacy,' which is the use of
multiple drugs or more drugs than clinically indicated. With many patients taking several
prescription and over-the-counter medications, and with the absorption, distribution, metabolism,
and elimination of medications altered by physiologic changes in the liver and kidney, the chances
of ADR increase. Some patients have numerous physicians and pharmacies. The physician should
identify all prescription and over-the-counter medications, and all herbal medicine and health
supplements; write them all down, preferably by generic names; and eliminate all unnecessary
medications. When reviewing the patient’s medication list, and before starting a new medication,
the physician should consider age-related and patient specific factors, such as changes in body
composition, advanced age, existing medical problems, liver and kidney problems, medications
already being taken, and medication and drug characteristics. Compliance can be improved by
timing the medications with meals, and by keeping the medication regimen simple.
Some examples of body changes and their effect on drugs: increased body fat (fat soluble drugs
are stored longer and released more slowly); decrease body water (increased concentration of
water soluble drugs); decreased liver function (decreased clearance of drugs mainly metabolized in
the liver); decreased kidney function (decresed clearance of drugs mainly cleared by the kidneys);
and decresed brain acetylcholine (increased risk of adverse CNS effects of drugs with
anticholinergic properties).
Dementia
Dementia is a significant decline in memory and one or more cognitive functions (eg language,
visual-spatial, executive) that adversely affect daily function and quality of life. Causes include:
irreversible and progressive disorders (eg Alzheimer’s disease, vascular, Lewy body), and
potentially reversible disorders (eg drug toxicity, metabolic disorders, thyroid disease).
Evaluation
Evaluation includes: History obtained from both patient (information may be limited) and other
informants (eg family members, caregivers), Physical and neurological examination, Mental status
evaluation (eg MMSE), Mood evaluation (eg GDS), Functional status (eg ADLs, IADLs). Laboratory
tests may include: CBC, TSH, B12, serum electrolytes (including Ca), Kidney and liver function
tests, and test for syphilis and other infections if indicated. Brain imaging (CT or MRI) may be
needed for: focal signs and symptoms, abrupt onset and rapid decline (weeks to a few months),
possible metastasis, possible hemorrhagic or ischemic stroke, or onset at an early age <60.
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Cognitive Assessment
Mini-Mental State Examination (MMSE)
The Mini-Mental State Examination (MMSE) is a widely used, well-validated screening tool for
cognitive impairment. It briefly measures orientation to time and place, immediate recall, short-term
verbal memory, calculation, language, and construct ability. Each area tested has a designated
point value, with the maximum possible score on the MMSE being 30/30.
• Recording: Record MMSE score of that date. The score is recorded using a denominator of 30
unless the patient was unable to complete the test due to a physical handicap (e.g. blindness) --
in which case the value of the questions not able to be completed is subtracted from 30 and the
resulting number used as the denominator for the test score. If a denominator of less than 30 is
used, the nature of the physical handicap should be indicated on the MMSE form. The
appropriate descriptor of the patient’s level of consciousness should also be noted. Alert =
remains awake easily. Drowsy = finds it difficult to stay awake. Stupor = is difficult to rouse.
Coma =unable to rouse.
• Time: The MMSE is completed at any time when there is a concern about cognitive ability. The
MMSE is more sensitive in detecting cognitive impairment than is the use of informal
questioning or “overall impression” of patient orientation.
• Method: When the purpose and value of the MMSE is explained well it is readily accepted by
most patients and family members. Take time to explain the rationale for using this tool before
commencing with the questions it contains. Most patients value their cognitive abilities very
highly and many are already well aware of the impact that medications or their disease state
can have on these abilities. Explaining that the MMSE may be of great help in detecting
reversible impairment of these faculties is usually enough to facilitate its acceptance by patients
and their families –and, in any case, it is information with which the patient has a right to be
provided. Before administering the MMSE it is important to make the patient comfortable and
establish a rapport with the patient. During its administration praising successes may help to
maintain this rapport and so is quite acceptable. Persisting on items the patient finds difficult
should be avoided.
The following are the details of how to administer and score the MMSE:
• Orientation: 1.Ask for the date. Then ask specifically for parts omitted, e.g. “Can you also tell
me what season it is?” The season is defined by the calendar, not the weather. One point for
each correct. Maximum score of 5. Note: there are no half points given in the MMSE. 2.Ask in
turn, “Can you tell me the name of this hospital?”, or home, if at home. (Town, country, etc).
One point for each correct. Maximum score of 5.
• Registration: Ask the patient if you may test his memory. Then say the names of three
unrelated objects, clearly and slowly, about one second for each. After you have said all three,
ask the patient to repeat them. This first repetition determines the patient’s score (out of 3) but
keep saying them until the patient can repeat all three (up to six trials). If he/she does not
eventually learn all three, it is unlikely that recall can be meaningfully tested. Nevertheless, it
should be attempted (see below).
• Attention and Calculation: Ask the patient to begin with 100 and count backward by 7. Stop
after 5 subtractions (93,86,79,72,65).Score the total number of correct answers. If the patient
cannot or will not perform this task, ask him/her to spell the word “world” backwards. The score
is the number of letters in correct order, e.g. dlrow = 5; dlorw =3.
• Recall: Ask the patient if he/she can recall the three words you previously asked him/her to
remember. Score one for each correct answer.
• Language Naming: Show the patient a wristwatch and ask him/her what it is. Repeat for
pencil. Score one for each correct answer.
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• Repetition: Ask the patient to repeat the sentence after you. Allow only one trial. Score one if
the repetition is completely correct and zero if it is not.
• 3-Stage Command: State the command first and then give the patient a piece of plain blank
paper. Score 1point for each part correctly executed.
• Reading: On a blank piece of paper print the sentence “Close your eyes”, in letters large
enough for the patient to see clearly. Ask him/her to read it and do what is says. Score 1 point
only if he actually closes his/her eyes.
• Writing: Give the patient a blank piece of paper and ask him/her to write a sentence for you.
Do not dictate a sentence; it is to be written spontaneously. It must contain a subject and verb
and be sensible. Correct grammar and punctuation are not necessary.
• Copying: On a clean piece of paper, draw intersecting pentagons, each side about 1 inch and
ask him/her to copy it exactly as it is. All 10 angles must be present and two must intersect to
score 1 point. Tremor and rotation are ignored.
Management
Identify and treat potentially reversible causes, limit or change problematic medications, behavioral
techniques (eg distraction), relaxation interventions (eg music, massage), environmental
modification (calm, peaceful environment), constant care and reassurance from the care team/
family/ caregivers, avoidance of frequent changes in daily routine and living space. Pharmacologic
management includes: medications to treat specific causes, and medications to treat associated
symptoms (such as neuroleptics and anxiolytics for psychosis and agitation, antidepressants for
depression, and anxiolytics for anxiety and irritability).
Pain
Pain is commonly underdiagnosed and under treated in older people, especially in patients with
cognitive impairments. Older people are also more likely to suffer chronic pain from multiple causes
such as arthritis, bone and joint disorders, back problems, and neuralgias, along with all the other
acute and chronic conditions that typically cause pain. Unrelieved pain can lead to depression,
decreased socialization and sleep disturbance.
Because of the risk of adverse drug reactions due to drug-drug interactions and decreased hepatic
and kidney function, pharmacologic management should be done carefully. The American Geriatric
Association recommends the following guidelines: “Use the least invasive route; use short-acting
analgesia for episodic pain and around-the-clock regimens for continuous pain; use long-acting or
sustained release formulations for continuous pain only; 'start low and go slow'; and anticipation,
prevention, and treatment of side effects.” Patients and families commonly fear pain at end of life.
Pain and physical discomfort can be relieved with medications, procedural interventions, and
cognitive-behavioral means, such as relaxation, biofeedback, and massage. Inadequate treatment
of pain is due to various causes which include: difficulty of patient to communicate; failure of
caregivers or providers to assess the severity of pain; insufficient knowledge about appropriate
management; fear that pain management may lead to addiction or premature death; and lack of
access and resources for adequate pain medication and management.
Pain sensation may be altered. Patients experience pain in different ways. Patients living with
chronic pain may not notice the incremental increase in pain. Diabetic patients may have altered
pain sensation related to neuropathy. Patients may experience less intense pain, and thus may
have more difficulty describing the exact location sand character of pain.
The use of nonsteroidal antiinflammatory drugs (NSAIDs) increases the risk of gastrointestinal
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bleeding, impaired renal function, edema, or even altered potassium levels. Opioids can be
problematic because older adults are predisposed to constipation. Short-acting opioids that are
effective in older adults include tramadol, morphine, hydrocodone or oxycodone, or oral
transmucosal fentanyl. Several opioids should be avoided in older adults. Avoid meperidine and
methadone because of their long half-life increases the risk of sedation, dizziness, falls, and
delirium. Meperidine should be avoided in patients with impaired kidney function because its toxic
metabolite, normeperidine, can accumulate. Pentazocine is associated with an increased risk of
delirium and agitation. Sustained release preparations (e.g., sustained release morphine and
oxycodone, and transdermal fentanyl) should be used carefully, and should only be used following
steady state accumulation of shorter acting opioids. Although they are helpful adjuvant
medications, amitriptyline and the other tricyclic antidepressants are poorly tolerated due to their
anticholinergic properties (eg bowel and bladder dysfunction, orthostatic hypotension resulting in
falls, delirium, movement disorders, and dry mouth). Among the tricyclics, nortriptyline and
desipramine are the less problematic choices; initial dosages should be low and dose titration
should be careful and slow. Complementary and alternative herbal medicines and supplements are
becoming more popular, and this may increase the risk for side-effects, and ADRs with prescription
drugs. Their use is often not reported by patients to physicians, and so, physicians should routinely
ask about the use of these over the counter preparations, medications and supplements.
Assessment
Assessment of pain in older adults should be performed regularly using tools that have been
demonstrated as effective in this population, for example the Numeric Rating Scale, the Pain
Thermometer, and the Faces Pain Scale. Because of cognitive impairment, either due to delirium
or dementia, the physician may not be able to reliably assess the patient by simply asking
questions and expecting reliable answers. However, the physician should still attempt to ask the
patient directly and simply whether he or she is in pain.
Three types of behavior have been associated with pain in persons with dementia: aggressiveness,
resistance against care, and vocalizations including increased volume of existing vocalizations.
Caregivers need to be educated to observe for patterns of behavior around certain activities that
may be provoking pain (movement, transferring, bathing), and to treat the individual proactively.
The use of a pain journal might be helpful for identifying trigger events. Understanding and
validation of a patient’s pain complaints through the process of thorough assessment is
fundamental to the good practice of medicine.
Pain assessment in patients with cognitive and language impairments, requires paying attention to
nonverbal and vocalized pain behaviors, and eliciting a history of recent changes in function that
may be due to pain. Functional assessments, including assessments of ADLs and IADLs are
helpful. The physician should also assess the effects pain on mood and psychosocial function;
age-specific scales (e.g., geriatric depression scale) are helpful.
Common Pain Behaviors in Cognitively Impaired Elderly Persons

(Source: AGS Panel on Persistent Pain in Older Persons)
Facial expressions: Slight frown; sad, frightened face; Grimacing, wrinkled forehead, closed or
tightened eyes; Any distorted expression; Rapid blinking
Verbalizations, vocalizations: Sighing, moaning, groaning; Grunting, chanting, calling out; Noisy
breathing; Asking for help; Verbally abusive
Body movements: Rigid, tense body posture, guarding; Fidgeting; Increased pacing, rocking;
Restricted movement; Gait or mobility changes
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Changes in interpersonal interactions: Aggressive, combative, resisting care; Decreased social
interactions; Socially inappropriate, disruptive; Withdrawn
Changes in activity patters or routines: Refusing food, appetite change; Increase in rest
periods; Sleep, rest pattern changes; Sudden cessation of common routines; Increased wandering
Mental status changes: Crying or tears; Increased confusion; Irritability or distress
Note: Some patients demonstrate little or no specific behavior associated with severe pain.
Principles of Management
An integrated treatment plan that incorporates pharmacotherapy, nonpharmacologic interventions
and functional rehabilitation should be considered for all patients who have debilitating chronic
pain. The goal of pain management includes: an improved level of independent function, an
increase in activities of daily living, and a decrease in pain and suffering.
The underlying principles of pain management in older patients are:

--- Address the specific cause/s of pain whenever possible.
--- Consider appropriate pharmacotherapy for older patients with diminished function and quality
of life as a result of chronic pain.
--- Consider the patient’s other chronic medical conditions and medications use in deciding on the
most appropriate pain management regimen.
--- Use the least invasive route of administration possible.
--- Use rapid-onset, short-acting analgesic drugs for episodic pains.
--- First use paracetamol/ acetaminophen for relieving mild to moderate musculoskeletal pain. The
maximum dose should not exceed 2,500-3,200 mg per day.
--- Use nonsteroidal antinflammatory drugs (NSAIDs) and even COX-2 inhibitors carefully-
especially in patients who are at-risk for adverse effects.
--- Consider opioid analgesic drugs may be for relieving moderate to severe pain.
--- Titrate doses slowly and carefully, while closely monitoring for adverse effects.
--- Anticipate and try to prevent drug-related constipation. Consider prophylactic laxatives.
--- Consider non-opioid analgesics and adjuvant medications which can be effective for some
chronic pain syndromes, eg neuropathic pain.
--- Use appropriate non-pharmacologic measures whenever possible.
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Palliative Care During the
12 Terminal Phase and the Death Event
End-of-life care means different things to different people. For the patient, it is about ensuring that
the transition from life to death occurs peacefully and without suffering, discomfort and loss of
dignity. For the family, it is a time of reflection, sadness and grief; and for some family members, it
may also be a time of regret and guilt. For many medical providers, end-of-life situations occur
regularly and are considered part of one’s job.
A good death includes six important components: pain and symptom management, clear decision-
making, preparation for death, completion, contributing to others, and affirmation of the whole
person. Patients, family, and other loved ones; medical and nursing staff; pastoral caregivers; and
other supportive caregivers all have an interest in ensuring quality end-of-life care. The 5 factors
that patients feel are important are: symptom control; avoidance of a prolonged dying process,
return of control and authority; relieving burden; and strengthening links with loved ones.
Families prefer to be present, helpful, informed and heard. They need help to avoid stress and
fatigue; and support and reassurance that the correct decisions are being made.
Syndrome of Imminent Death

Recognition
• Early Stage: bed bound; loss of interest and ability to drink/eat; cognitive changes: either
hypoactive or hyperactive delirium or increasing sleepiness.
• Mid Stage: further decline in mental status- obtunded; "death rattle"- pooled oral secretions that
are not cleared due to loss of swallowing reflex; fever is common.
• Late Stage: coma, cool extremities, altered respiratory pattern- either fast or slow, fever is
common; death.
Time Course
• The time to traverse the various stages can be less than 24 hours or up to 10-14 days. Once
entered, it is difficult to accurately predict the time course, which may cause considerable family
distress, as death seems to "linger".
Treatment
• Once recognized, discuss with family, confirm treatment goals; clearly and accurately state in
progress note: "patient is dying", instead of vague statements like "prognosis is poor".
• Discuss with family the goal of stopping all treatments that are not contributing to comfort- pulse
ox, IV hydration, antibiotics, finger sticks, etc. Hydration and feeding issues will need to be
discussed sensitively, often eliciting more concern among the medical team than the family .
• Use appropriate management interventions to relieve terminal symptoms that may cause
discomfort and suffering.
• Use opioids (e.g. morphine) to relieve pain, dyspnea, and other opioid responsive symptoms.
As death approaches, do not abruptly stop opioids, which were started earlier to treat pain;
assume that the pain stimulus is still present; families also want reassurance that their loved
one is not suffering.
• Provide good supportive care, including good mouth and skin care. Always treat the patient with
respect and dignity, even if the patient is non-responsive.
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Common Terminal Symptoms
During the final days of life, characteristic symptoms that commonly occur include: dyspnea,
anxiety, restlessness, agitation, delirium, nausea and vomiting, the “death rattle”, and pain. These
are usually multifactorial in etiology. Diagnostic testing is limited and tempered by the patient’s
impending death. Thus, management is palliative and partly empirical. At times, terminal symptoms
become refractory even to aggressive palliative measures; and terminal sedation becomes a
reasonable and appropriate option.
Terminal Dyspnea
Dyspnea is the most common severe symptom as death approaches. It is a common cause of
suffering, anxiety and discomfort for both the patient and family. Possible causes include existing
disease (e.g. COPD, CHF), superimposed disease (e.g. pneumonia, pulmonary embolism), cancer
complications (e.g. pleural effusion, airway obstruction, ascites), side-effects of therapy (e.g.
radiation pneumonitis), and other causes (e.g. anxiety, anemia)
There are also common breathing patterns during the terminal phase that may distress the family.
Explain Cheyne-Stokes respirations, apnea, and agonal breathing patterns to help family and
friends understand the process, and relieve their anxiety and fear that the patient is choking,
suffocating, of experiencing significant discomfort.
Management:
• Treat any easily treatable underlying cause. Consider the very limited life expectancy and the
discomfort and aggressiveness of any planned interventions.
• Manual or electric fan that provides a gentle breeze directed at the patients face can stimulate
mechanical and temperature receptors of the trigeminal nerve in the cheek and nasopharynx,
and alter the central perception of dyspnea.
• Body positioning to improve respiration may be tried.
• Oxygen relieves dyspnea associated with hypoxia. Its use for non hypoxic dyspnea is slightly
controversial. In the actively dying patient, oxygen may be given if the intervention appears to
comfort the patient, regardless of the underlying mechanisms involved (either an undetermined
pharmacologic mechanism, or placebo effect). The giving of oxygen may also comfort the family
with the thought that something is being given to comfort the actively dying patient with
dyspnea. A nasal cannula is usually more comfortable than a face mask.
• Opioids decrease the perception of breathlessness, decrease the ventilatory response to
hypoxia and hypercapnia, and decrease oxygen demand. Opioids can be given by various
routes, but during the final hours, as the patient becomes unconscious and unable to swallow,
intravenous, subcutaneous, and rectal routes are frequently used.
Morphine: A: 5 mg C: 0.1 mg/kg q1-4 hr, PO/SL/PR/IM/IV/SQ, titrate dose 25-50% daily until
dyspnea improves or sedation becomes problematic. Use the 3:1 oral to parenteral route ratio if
switching from PO to IV/SQ during final hours. For acute severe dyspnea, use A: 2-5 mg C:
0.04-0.1 mg/kg IV/SQ q 15-20 min until dyspnea is relieved. Nebulized morphine may be tried
(A: 5 mg C: 0.1 mg/kg, given with 2 ml normal saline q 1-4 hr titrated to A: 20 mg C: 0.2 mg/kg
q2-4 hr), especially if the patient fails to respond to other routes and interventions. However the
patient should be monitored for bronchospasm which is usually a first-dose effect due to
histamine release from pulmonary mast cells, and given prophylactic antihistamines (e.g.
diphenhyramine).
• Benzodiazepines reduce air hunger and anxiety during the final days of life. Usually used as an
adjunct to opioids but sometimes used as initial monotherapy if there is a significant component
of anxiety occurring with the dyspnea.
Midazolam (A: 0.5 mg C: 0.01 mg/kg IV q15-30 min until settled; or A: 2.5-5 mg C: 0.05-0.1
mg/kg SQ, then continuous SQ infusion of A: 10-20 mg C: 0.2-0.4 mg q24hr)
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Lorazepam (A: 0.5-1 mg C: 0.01-0.02 mg/kg PO/SL/PR/IM/IV/SQ q1-4hr)
Diazepam (A: 5 mg C: 0.1 mg/kg PO/SL/PR/IM/IV q1-4hr)
• Neuroleptics (eg haloperidol, chlorpromazine) may be used if not responsive or unable to take
opioids and/or benzodiazepines.
• Steroids (eg dexamethasone, prednisone) may be useful if dyspnea is due to lymphangitis,
airway obstruction, pneumonitis, or SVC syndrome.
• Diuretics (eg furosamide, bumetanide) are useful if pulmonary congestion/edema, or ascites
significantly contributes to dyspnea.
• Bronchodilators (eg nebulized albuterol, salbutamol) are useful if bronchospasm contributes to
dyspnea. Monitor the patient for b-adrenergic side-effects (eg agitation, tremor, worsening
anxiety) which can also worsen dyspnea. If the patient is cannot tolerate adrenergic agents,
anticholinergics (eg ipatropium bromide) may be used instead.
• Thoracentesis and paracentesis for dyspnea due to pleural effusion and ascites respectively,
are seldom used in the actively dying patient. They may be considered if all other interventions
fail to adequately relieve the dyspnea, and if the dyspnea is causing significant discomfort and
suffering.
Death Rattle and Oral Secretions

As the level of consciousness decreases, patients lose the ability to swallow and clear oral
secretions. While breathing, air moves over these secretions, which have pooled in the oropharynx
and bronchi; the resulting turbulence causes gurgling or rattling noises. There is no evidence that
patients find it uncomfortable, but the noises may be disturbing to the patient's visitors, family, and
caregivers who may fear that the patient is choking to death. Similar sounds may occur in patients
who are not imminently dying, such as gurgling or rattling noises those with brain injury or those
with disorders that cause increased production or decreased clearance of secretions. There are
two types of death rattles: type 1, predominantly salivary secretions and type 2, predominantly
bronchial secretions. Death rattle is a good predictor of death; the median time from onset of death
rattle to death is about 16 hours.
Management:
Non-pharmacological treatments:
• Positioning the patient on their side or in a semi-prone position may facilitate postural drainage.
• Trendelenburg for 1-2 minutes to moves secretions up into the oropharynx, for easier
suctioning; however, aspiration risk is increased.
• Gentle oropharyngeal suctioning, but this is often ineffective when secretions are beyond the
reach of the catheter. Note that frequent suctioning may disturb both patient and visitors.
• Reduce fluid intake.
Pharmacological Treatments:
Consider muscarinic receptor blockers (anti-cholinergic drugs). These include scopolamine,
hyoscyamine, glycopyrrolate, and atropine. These agents can cause varying degrees of blurred
vision, sedation, confusion, delirium, restlessness, hallucinations, palpitations, constipation, and
urinary retention. Tertiary amines (scopolamine, atropine) cross the blood-brain barrier, and
quaternary amines (hyoscyamine, glycopyrrolate) do not. Drugs which cross the BBB are more
likely to cause CNS toxicity (sedation, delirium).
Scopolamine (A: 0.32-0.65 mg/dose, C: 6 mcg/kg/dose, SC/IM/IV tid-qid. For > 11 yr old:
transdermal 1.5mg/patch, delivers 0.5 mg over 3 days, apply patch behind the ear, q72hr)
Hyoscyamine (A: 0.125-0.25 mg PO/SL, 0.25-0.5 mg IV/IM/SC. C: <2 yr old: 3-4 mcg/kg/dose, >2
yr old: 2.5-3 mcg/kg/dose, PO/SL, tid-qid)
Glycopyrrolate (A: 1-2 mg PO, 0.1-0.2 mg/dose IV/IM/SC. C: 0.04-0.1 mg/kg/dose PO, 0.004-0.01
mg/kg/dose IV/IM/SC, tid-qid)
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Atropine (A: 0.4-0.5 mg/dose, C: 0.01 mg/kg/dose, SC/IV/IM, max 0.4 mg/dose, tid-qid). May give
nebulized combination of atopine (A: 2 mg C: 0.04 mg/kg) + morphine (A: 2.5-5 mg C:0.05-0.1
mg/kg) + dexamethasone (A: 2 mg C: 0.04 mg/kg).
Anxiety, Restlessness, Agitation and Delirium

Anxiety, restlessness, agitation and delirium can make the care of actively dying patients difficult.
They all have many possible etiologies. Their occurrence can influence a family’s perception of
whether the death was peaceful or with much suffering and discomfort.
Anxiety is a common psychological problem in actively dying patients. (See Section on Anxiety).
Restlessness and agitation may occur as a result of a significant ongoing physical or
phychological discomfort, encephalopathy, organ dysfunction, metabolic problems, or fear and
anxiety in the dying patient. Restlessness is common in the final hours of life. Restlessness can
manifest in various ways, e.g. tossing and turning, moaning, grunting, crying, shouting. Avoid the
use of restraints if possible.
Terminal Delirium is a global cerebral dysfunction characterized by disordered awareness,
attention, and cognition, which occurs in many dying patients. It manifests more intensely than
restlessness. Delirium usually presents as an acute change in cognitive function, sleep
disturbance, mumbling speech, memory and perceptual disturbances. (See Section on Delirium)
Management:
• Identify and manage any underlying cause/s and contributing factors that can still be reasonably
and easily treated.
• If the patient is confused, avoid contradicting, or arguing with them. Avoid conversations that
may worsen anxiety, confusion, and/or agitation.
• Maintain a quiet, relaxed environment. Consider music therapy; use relaxing music, especially
the patient’s favorites.
• If there is a clinical suspicion that dehydration is a cause, a brief trial of hydration may be tried.
• Provide spiritual support if needed. Provide verbal and tactile reassurance. Psychosocial
interventions are seldom helpful and difficult to initiate when the patient is already actively
dying; try to initiate potentially helpful psychosocial interventions earlier in the dying process.
• Specific management to address symptoms (eg dyspnea, pain) that may be contributing to the
patient’s anxiety.
• Benzodiazepines are the principal drugs for anxiety. They can also be added to neuroleptics for
severe agitation and delirium; but they should not be used as monotherapy for delirium. They
may worsen agitation and delirium, and should be discontinued if this happens. Try to start with
lower doses and titrate as needed.
Midazolam (A: 0.5-5 mg, C: 0.01-0.1 mg/kg, IV/SQ q1-4 hr; continuous infusion of A:10-20
C:0.2-0.4 mg/kg in 24hrs.)
Lorazepam (A: 0.5-2 mg, C:0.01-0.04 mg/kg, PO/SL/IM/IV/SQ, q1-4 hr)
Diazepam (A:2.5-10 mg, C:0.05-0.2 mg/kg, PO/PR/IM/IV, q1-4 hr)
Clonazepam (A:0.5-2 mg, C:0.01-0.04 mg/kg, PO, bid-qid)
• Neuroleptics are the principal drugs for delirium. They may be used for anxiety if
benzodiazepines fail to relieve anxiety, if psychotic features or delirium accompany anxiety, or if
the patient cannot take benzodiazepines due to contraindications or their side effects (e.g.
respiratory depression, hypotension). Note that the parenteral dose is usually twice more potent
than the oral dose. Haloperidol is the drug of choice, due to its short half-life, lack of active
metabolites, and minimal anticholinergic and cardiovascular side-effects. Risperidone,
quetiapine and olanzapine are atypical antipsychotics with minimal side effects.
Haloperidol (A:0.5-1 mg, C: 0.01-0.02 mg/kg, PO/IM/IV/SQ, q1-6 hr; for acute situations, give
q1hr until symptom is controlled; continuous infusion A:5-15 mg C: 0.1-0.3 mg/kg in 24 hrs)
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Chlorpromazine (A:10-25 mg, C:0.2-0.5 mg/kg, PO/PR/IM/IV, q4-6hr)
Thioridazine (A:10-50 mg, C: 0.2-1 mg/kg, PO, tid-qid)
Risperidone (A:0.5-1 mg, C:0.01-0.02 mg/kg, PO, bid)
Olanzapine (A:2.5-5 mg, C:0.05-0.1 mg/kg, PO, qday)
Quetiapine (A:25-50 mg, 0.5-1 mg/kg, PO, bid)
• Antihistamines, particularly the anxiolytic, hydroxyzine, may be used for anxiety if the patient
cannot take benzodiazepines or neuroleptics due to contraindications or their side-effects. They
may also have co-analgesic effects.
Hydroxyzine (A: 10-25 mg, C: 0.2-0.5 mg/kg, PO/IM/IV/SQ, q2-4 hr)
Nausea and Vomiting

Occurs in about half of patients within the last 6 weeks of life. Etiology is usually multifactorial
especially in the final days.
Management
• Eliminate unpleasant odors.
• Avoid foods that precipitate nausea and vomiting.
• If the patient wants to eat, sips of clear liquid or soft food may be tried. Cold food may be better
tolerated. Avoid large volume feedings; give small frequent feedings. Sour foods, sipping lemon
juice may decrease nausea.
• Dopamine antagonist, haloperidol (A: 0.5-1 mg, C: 0.01-0.02 mg/kg, PO/IM/IV/SQ, q1-6 hr;
continuous infusion A:5-15 mg C: 0.1-0.3 mg/kg in 24 hrs) is commonly used.
• Dopamine antagonist/serotonin agonist metoclopramide (A:5-20 mg, C:0.1-0.4 mg/kg,
PO/IM/IV/SQ, q6 hr; continuous infusion of A:20-80 mg C:0.4-1.6 mg/kg in 24 hrs) can be used
as an antiemetic and a prokinetic especially for vomiting due to gastroparesis.
• Anticholinergic agents are useful especially for NV with colic and bowel obstruction.
Hyocine-N-butylbromide (A:10-20 mg, C:0.2-0.4 mg/kg, PO/IM/IV/SQ, q4-6 hr)
Hyocyamine (A:0.125-0.250 mg C:0.003-0.005 mg/kg, PO, q 4hr)
• Antihistamines may help with bowel obstruction, increased intracranial pressure, and motion
sickness.
Diphenhydramine (A:25-50 mg, C: 0.5-1 mg/kg, PO/IM/IV, q4-6 hr)
Meclizine (A:25-50 mg, C: 0.5-1 mg/kg, PO, q 4-6 hr)
Buclizine (A:50 mg, C: 1 mg/kg, PO, q 4-6 hr)
• Serotonin antagonists are effective but more expensive than other agents.
Ondansetron (A:8 mg, C:0.15 mg/kg, PO/IV/SQ, q8 hr; continuous infusion of A:8-24 mg,
C:0.15-0.5 mg/kg in 24 hrs)
Granisetron (A:0.5-1 mg, C:0.01-0.02 mg/kg, PO/IV/SQ, q12 hr)
• Steroids are rarely used as monotherapy; but they can be useful adjuncts, especially in
combination with metoclopramide or serotonin antagonists. They reduce edema associated with
GI tumors, or brain tumors.
Dexamethasone (A:1-4 mg, C:0.02-0.08 mg/kg, PO/IV/SQ, q 6 hr; continuous infusion A:2-12
mg, C:0.04-0.24 mg/kg, in 24 hrs)
• Benzodiazepines are rarely used as monotherapy for NV; but they can be used as adjucnts
especially for NV with anxiety.
• Somatostatin analog, octreotide, is useful for NV with bowel obstruction. It increases water
absorption, decreases GI secretions, and decreases peristalsis.
Octreotide (A: 50-150 mcg, C: 1-3 mcg/kg, SQ, tid; continuous infusion A:150-900 mcg, C:3-10
mcg/kg, in 24 hrs)
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Fever and Diaphoresis
Fever and diaphoresis may result from the disease process or the medications used to provide
pain and symptom control. Common causes of fever in the imminently dying patient include:
atelectasis due to shallow respirations, pneumonia from aspiration and other causes, tumor
infiltration of the liver, and brain metastasis causing a high fever that responds poorly to
antipyretics. Fever and diaphoresis usually do not cause any significant discomfort to the
imminently dying patient, and treatment may not be necessary.
Management
• Cooling blankets, ice packs, and cold compresses may not promote comfort.
• Acetaminophen or NSAIDs (e.g. ibuprofen, naproxen, indomethacin) may be used if the
physician and the family prefer to alleviate the fever. However, it is not imperative to achieve a
normal body temperature in the dying patient.
Massive Hemorrhage
Tumors may infiltrate large vessels and vascular structures, leading to catastrophic bleeding.
Identify the patients at risk based on available clinical information about the patient’s tumor, co-
morbid conditions that predispose to bleeding, and the presence of coagulation disorders, and
other risk factors. Anticipate, and plan in advance.
Management
• The goal of management is to prevent or minimize the stress, anxiety, and suffering during a
massive bleed. For the conscious patient, this occurs during the final minutes prior to lapsing
into unconsciousness. Management plans should be prepared in advance.
• Anticipate and sensitively instruct the patient, family, and caregivers on the possibility of a
massive bleed, management plans, what to expect, and what they can do.
• Emergency administration of a rapid-acting sedative for the patient, e.g. midazolam (A: 5-15
mg, C: 0.1-0.3 mg/kg, IV/SQ) or diazepam (A: 10-20 mg, C:0.2-0.4 mg/kg PR/IM/IV; rectal
diazepam can be used by family at home especially if there is no IV/SQ access) titrated to effect
if needed). If massive hemorrhage is likely, determine drug, dose, and route of administration in
advance; and have pre-drawn doses ready for immediate use- eg midazolam (A: 5 mg C: 0.1
mg/kg pre-filled syringes for IV/SC).
• Use dark towels to absorb blood and to apply pressure to site if bleeding is external. Dark
towels and a dark colored basin of water should always be near the patient- to disguise the
color of blood and decrease anxiety.
Myoclonus, Seizure, and Convulsions

Myoclonus manifests as random jerking and twitching, and should not be confused with agitation or
seizure. It may cause episodes of pain exacerbation, and increased wakefulness, leading to an
increase in discomfort and suffering. It can also distress family members.
Seizure and convulsions may be due to primary or metastatic brain tumors, or lesions from
neurosurgery or radiotherapy. Some patients may have a long time seizure disorder.
Management
• Look for easily reversible causes. It may be due to neuroleptics, opioids, metoclopramide, as
well as withdrawal from sedatives, anticonvulsants, or alcohol.
• Anticipate and sensitively instruct the patient, family, and caregivers on the possibility of
seizures and convulsions, management plans, what to expect, and what they can do.
• It can be managed with benzodiazepines, such as midazolam, diazepam, or clonazepam.
Severe episodes may require higher doses. Give q1-2 hr until episode is controlled. Consider
maintenance dosing regimen or continuous infusion if recurrence is likely.
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Midazolam (A: 0.5-5 mg, C: 0.01-0.1 mg/kg, IV/SQ q1-4 hr; consider continuous infusion of
A:10-20 C:0.2-0.4 mg/kg in 24hrs.)
Diazepam (A:2.5-10 mg, C:0.05-0.2 mg/kg, PO/PR/IM/IV, q1-4 hr; consider maintenance doses
qhs to bid; rectal route can be used by family at home especially if there is no IV/SQ access)
Clonazepam (A:0.5-2 mg, C:0.01-0.04 mg/kg, PO, bid-qid)
Acute Urinary Retention

Acute urinary retention can occur during the terminal phase.
Management
• Look for easily reversible causes.
• Relieve the discomfort by draining the bladder. Provide adequate analgesia prior to
catheterization (systemic analgesics, or urethral application of topical lidocaine may be used).
Leaving a draining catheter is usually better than intermittent catheterization during the terminal
phase. The catheter may be clamped and released intermittently, or freely drain in a bag. If the
is note of debris, bladder lavage may be considered.
• Suprapubic tap with possible suprapubic catheterization may be needed if urethral
catheterization cannot be done successfully (e.g. urethral obstruction). Suprapubic
catheterization done prior to the terminal phase is also an option to relieve recurrent pre-
terminal urinary retention and prevent terminal urinary retention.
Pain and Suffering

Many patients still die with pain and suffering that could have been relieved with appropriate
palliative care measaures. This problem may be due to an over-emphasis on treating diseases
rather than symptoms, or due to the difficulty in evaluating the severity of subjective symptoms.
Pain can be very difficult to assess at the end of life, but assessment is not impossible (eg it is
probably true that a patient who is restless, tachypneic, or diaphoretic may be in severe pain).
Patients who seem unconscious may show signs of pain (e.g. furrowed eyebrows, tension across
the forehead, and grimacing) when repositioned or moved. On the other hand, groaning and
moaning which is commonly seen in dying patients, may not be due to pain.
Pain may also decrease in actively dying patients due to many reasons. There is less movement
related pain as the patient becomes bed-bound. The body also naturally protects itself from
unpleasant symptoms during the dying process. Hypoxemia, uremia, reduced cardiac output,
ketosis, and dehydration may all cause reduced conscious level; and these effects may provide a
degree of "natural comfort care". However, some degree of pharmacologic management may
sometimes be needed in the terminal care of the dying patient.
Pharmacologic Approaches to Pain and Suffering (see Section on Pain Management)

Opioids
Opioids are the mainstay of comfort care at the end of life. Central mechanisms provide analgesia,
sedation, and a degree of euphoria. Morphine is commonly used because it is inexpensive,
effective, and easy to titrate. Fentanyl, a synthetic opioid, has fewer sedative and euphoric effects,
and does not cause histamine release. Fentanyl may be used if there is a history of problems with
morphine. Opioids should not be stopped abruptly when the patient becomes unresponsive to
stimuli, since patients may still feel pain even if unresponsive or comatose.
Benzodiazepines
Benzodiazepines have anxiolytic and amnesic effects, both helpful in the dying process. They act
synergistically with opioids and may address some of the suffering that is not due to pain. They
also have anticonvulsant properties and may prevent preterminal seizures.
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Other Options
Propofol, barbiturates, and other sedatives are also used, but proper use of opioids and
benzodiazepines are usually adequate in most cases. Neuromuscular blocking agents are not
useful, because they have no effect on symptoms, and may even cause suffering if there is
insufficient sedation.
Principles of Titration
The principle of double effect allows drugs, that may cause respiratory depression and
hypotension, to be given to a patient even if death may occur, provided the intent is to relieve pain
and suffering, and not death. In addition to a good documentation of the decision making process,
the way a drug is prescribed and given, should convey that the primary intent is to relieve pain and
suffering. For example, a bolus of a large 2 g of morphine to an opioid-naive patient gives the
impression that the intent is to end life. An appropriate but lower bolus dose, and initial
maintenance regimen that is carefully increased by small increments until the distressing symptom
is relieved, coupled with regular patient assessments and documentation show that the primary
intent is to relieve distress. It is appropriate and good practice to write a specific order, using
language such as "infuse morphine in dose of ___ to relieve pain and suffering." This clearly
documents that the primary intent is to provide comfort, and not to end life.
When rapid titration is required for severe distress in the terminal phase of life, parenteral dosing
should be used, if possible. The titrated dose should be based on a proportion of the last dose
given. For example, if a dyspneic patient is receiving 10 mg/h of morphine and is experiencing
some relief but is still breathless, a bolus of 15—20mg (150%--200% of the hourly dose) is
reasonable, after which the hourly infusion dose should be increased by approximately 50% to 15
mg/h. If reasonable relief through sedation is not achieved when the medication’s maximal effect
has occurred (15—30 minutes affer IV/SC dosing; 60—90 minutes after enteral immediate-release
dosing), the baseline dose and the rescue dose for breakthrough dyspnea can both be doubled.
Continue to titrate both the baseline and rescue doses by 50%--200% increments to desired level
of sedation or symptom relief.
Opioid Infusions
Opioid infusions, IV or SC, provide smooth and efficient relief of pain or dyspnea in the imminently
dying patient. Opioids that are correctly titrated to provide symptom relief will not cause respiratory
depression. The following is a step by step approach to opioid infusions in the dying patient.
• Calculate an equianalgesic dose of currently used opioids; then convert this to an equianalgesic
basal rate. (Example: patient on MS Contin, 60 mg q12, now unable to swallow; 60 mg q 12 =
120 mg/24 hours po morphine = 40 mg IV morphine/24 hours = approximately 2 mg/hr IV
infusion basal rate).
• If the current opioid dose is not effective, increase the basal dose by 25-100%, and based on
the degree of discomfort.
• If the patient is opioid naïve or when increasing the basal rate above the current equianalgesic
rate, give a loading dose when starting the infusion (Example: for a 1 mg/hr basal rate, give 2-5
mg loading dose).
• Choose a rescue dose (prn rescue dose or PCA dose). This can be a nurse initiated, prn, bolus
dose when using a standard IV infuser, or a patient, nurse or family initiative bolus using a PCA
device (Note: even though the dying patient may be unable to press the button, the nurse or
family members can use the PCA device, depending on local hospital policy). Based on
patterns of breakthrough pain, start with a bolus dose of 50-100% of the hourly rate. For
example, for a morphine infusion of 2 mg/hr, choose a starting bolus dose of 1-2 mg.
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• Choose a dosing interval. The peak analgesic effect from an IV bolus dose of morphine is 5-10
minutes; thus, the dosing interval (Lockout interval for a PCA device) should be in the range of
10-20 minutes.
• Reassess for desired effect vs. side effects every 10-15 minutes until stable. Adjust bolus dose
size every 30-60 minutes until desired effect is achieved.
• Change the basal rate as needed no more frequently than every 6-8 hours; use the number of
administered bolus doses as a rough guide when calculating a new basal rate-however, do not
increase the basal rate by more than 100% at any one time. When increasing the basal rate,
always administer a loading dose so as to more rapidly achieve steady-state blood levels.
Note: Differences in age, renal and pulmonary function and past responses to opioids must be
considered when developing an appropriate analgesic treatment plan. When patients become
anuric close to death, continuous dosing may be discontinued in favor of bolus dosing to
prevent metabolite accumulation and agitated delirium.
Many physicians inaccurately believe that morphine has an unusually or unacceptably high risk
of an adverse event that may cause death, particularly when the patient is frail or close to the
end of his or her life. If the intent in morphine in the scenario is to relieve pain and not to cause
death, and accepted dosing guidelines are followed then: the treatment is considered ethical;
the risk of potentially dangerous adverse secondary effects is minimal; and the risk of
respiratory depression is usually over-estimated.
Psychosocial Suffering
Psychosocial problems are common in patients and families during the terminal phase.
Common problems include: adjustment and coping problems, fear, anxiety, sadness, and
depression. (see Section on Psychosocial Issues)
Management
• Regularly assess the patient and family for psychosocial issues and problems. Identify and
manage unresolved physical, spiritual, or existential problems that may be contributing to the
patient’s psychosocial suffering.
• Simply listening to the patient and family member/s can be helpful.
• Reassure patients that they will not be abandoned by family and medical providers, will be
helped with their discomfort and suffering, will not be a burden to the people who are caring for
them, and will not be subjected to inappropriate or futile interventions and treatments that they
prefer not to have.
• Brief, focused psychosocial interventions can be helpful. Supportive care and counseling can
help relieve psychosocial problems and provide comfort.
• Use appropriate quick acting medications (sedatives, anxiolytics, stimulants, etc.) when needed.
• Regular visits by family, relatives, and friends can be very helpful. Encourage and arrange visits
if needed. Advise family and friends that even seemingly unconscious patients can still hear;
encourage them to continue to talk to the patient and provide words of caring and comfort.
• Psychosocial care providers who are members of the palliative care team can provide further
support and counseling.
• Many seemingly unconscious patients can still hear and sense what is happening around them.
Maintain a peaceful, relaxed environment. Consider music therapy; use relaxing music,
especially the patient’s favorites.
Spiritual and Existential Suffering

Spiritual and existential issues are common and become increasingly important to most patients
and families during the terminal phase. (see Section on Spiritual Issues)
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Common issues include: questions about the meaning of life, the meaning of suffering and death,
the significance of one’s life, one’s legacy to the world, how one will be remembered, family
conflicts, unresolved personal and family problems, forgiveness and reconciliation, not being
prepared for death, what lies ahead after death, and others.
Management
• Regularly assess the patient and family for spiritual and/or existential issues and problems.
Identify and manage unresolved physical and psychosocial problems that may be contributing
to the patient’s spiritual and/or existential suffering.
• Simply listening to the patient and family member/s can be helpful.
• Spiritual and/or existential support and counseling should provide comfort and refrain from
being judgmental.
• Regularly ask the patient and family if they want to talk to their priest, pastor, or any person who
has been a source spiritual and/or existential support. For some, regular visits by priests,
pastors, or friends from one’s spiritual group/church/temple can be very helpful. Encourage and
arrange visits if needed.
• Ask if there are practices, rituals, or sacraments that will provide comfort and a sense of peace.
This may include anointing with oils, sacraments for the sick; reading or having texts read from
holy books, or any text or book that may provide comfort and peace.
• Pastoral care providers who are members of the palliative care team can provide further
support and counseling.
Family and Caregiver Issues

Family and caregivers also experience significant psychosocial and even spiritual and existential
problems during the terminal phase.
Mangement
• Regularly assess for psychosocial and spiritual/existential problems, and manage appropriately.
• Address family/caregiver fatigue. Help develop an appropriate plan for caregiving. Provide help
and respite care if needed.
• Educate family and caregivers on what is the patient’s condition, what to expect, what they can
do, and how they can provide care to the patient. Listen to and address their fears and issues.
Regular family/ caregiver meetings are helpful.
• Encourage, and help facilitate open communication between the patient, family members, and
caregivers.
• Brief, focused psychosocial interventions and counseling can help family members/caregivers
resolve psychosocial problems due to unresolved conflicts and issues that involve the patient.
• Use appropriate medications (e.g. sedatives, anxiolytics, antidepressants, etc.) if needed.
• Provide appropriate spiritual and pastoral care and counseling if needed.
Removal of Life-Sustaining Treatments

There is no ethical difference between withdrawing an ineffective treatment and not starting it in the
first place. However, many physicians find this difficult. Lack of experience or fear that removal of a
treatment will lead to immediate death may lead to lack of action. If counseled carefully in advance,
many families are comfortable with the removal of treatments that are futile, and those that prolong
death rather than life.
Some families have clear ideas of what is appropriate for them, while others need help and
guidance. Some general helpful principles are:
• Counsel the family about the change in focus from cure to palliation and end of life care. Advice
them that that this does not mean "giving up."
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• Remove those treatments that will have the least immediate effect first. For example, first
discontinue antibiotics, prophylactic heparin, and H2 blockers.
• Concentrate on the positive aspects of the process-- eg, ending of suffering, relief of pain and
discomfort, no further uncomfortable tests or biopsies, and so on.
• Advice the family that it is normal for them to be concerned or even scared, but that their
decision is still the correct one. Know that death is a very traumatic event for the survivors, and
that it can be stressful even for the best prepared.
• Avoid specifying definite time frames. It is not possible to accurately predict when a patient will
die.
• Encourage the family to focus on the patient, not the blood pressure, monitors, or tests.
• Do not burden the family with guilt. The decision to withdraw medical therapies, done with the
support of the family is proper and right.
• Use judgment when using religious connotations. Families benefit enormously from appropriate
spiritual support, but this is by no means universal. Respect their beliefs.
• Try to gain a consensus from all stakeholders -- eg, medical and nursing staff; pastoral and
social workers; and family members. Try to make sure all those with an interest know the plan.
Probably the most important aspect of high-quality end-of-life care is general agreement on
why, how, and when the treatment withdrawal process will take place.
• Be aware that families deal with grief differently. Help the family through the grieving process.
• The physician and staff should be compassionate and involved, but not to the extent that it
adversely affects them and the care they give the next patient.
Nutrition and Fluids

As death becomes imminent, the continuation of nutritional support and intravenous fluids may
become more burdensome than beneficial to the patient and family. Families and caregivers may
struggle with decisions regarding food and fluids, and experience anxieties regarding starvation
and dehydration. Clear and thoughtful counseling and education about the dying process may
alleviate these anxieties. Explain the possibility of fluid overload, and its accompanying symptoms,
with continued hydration. The realization that these measures may just prolong the dying process,
especially in a patient who is already comatose, may lead the family to decide to discontinue these
therapies. An understanding of the patient and family’s cultural, spiritual, and personal beliefs may
help this process. Avoid the sense of cause-and-effect (eg, “he/she died because we decided to
stop food and fluids”).
Sedation in Palliative Care (AAHPM, 2006)

Ordinary sedation
The ordinary use of sedative medications for the treatment of anxiety, agitated depression,
insomnia, or related disorders, in which the goal of treatment is the relief of the symptom without
reducing the patient’s level of consciousness.
Palliative sedation (PS)
The use of sedative medication at least in part to reduce patient awareness of distressing
symptoms that are insufficiently controlled by symptom-specific therapies. The level of sedation is
proportionate to the patient’s level of distress, and alertness is preserved as much as possible.
Palliative sedation (PS) to unconsciousness
The administration of sedatives to the point of unconsciousness, when less extreme sedation has
not achieved sufficient relief of distressing symptoms. This practice is used only for the most
severe, intractable suffering at the very end of life.
Health care providers serving patients near the end of life have a responsibility to offer sedatives in
appropriate circumstances, usually targeted at specific symptoms (ordinary sedation). PS is
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occasionally necessary to relieve otherwise intractable suffering, with the degree of sedation
proportionate to the severity of the target symptom. PS to unconsciousness should only be
considered in the rare circumstance that thorough interdisciplinary assessment and treatment of a
patient’s suffering has not resulted in sufficient relief (or is associated with unacceptable side
effects), and when sedation to unconsciousness is needed to meet the patient’s goal of relief from
suffering. As with all treatment, the use of PS requires informed consent. Treatment of pain and
other symptoms should be continued with PS, as sedation may decrease the patient’s ability to
communicate symptoms. PS should not be considered irreversible; reducing the sedation should
be considered if clinical evaluation suggests that the symptom status may have changed.
Ethical principles and legal rulings support the use of palliative sedation even to the level of
unconsciousness to relieve otherwise refractory suffering. With regard to PS, the key ethical
features are:
1. The clinicians’ intent is to relieve suffering,
2. The degree of sedation must be proportionate to the severity of suffering, and
3. The patient should give informed consent; if the patient is not capable of decision-making, the
surrogate decision maker should give informed consent consistent with the goals of care and
values previously stated by the patient.
PS usually does not alter the timing or mechanism of a patient’s death, as refractory symptoms are
most often associated with very advanced terminal illness. The possibility that PS might hasten
death as an unintended consequence should be assessed by the health care team in its
consideration of PS, and then addressed directly in the process of obtaining informed consent.
Institutional bioethics committees may be consulted in cases where there is disagreement
regarding the provision of PS.
Controlled Sedation for Refractory Pain, Distress, and Suffering

Palliative Sedation, or Controlled Sedation for Refractory Suffering (a.k.a. total or terminal
sedation) can be defined as: "sedation for intractable distress in the dying". The use of sedation
has been reported to be anywhere from 2%-50% of hospice patients. Common indications for
sedation include: intractable pain or physical distress, anxiety/psychological distress, dyspnea, and
delirium/agitation.
While there exists objective criteria for quantifying and treating physical distress, evaluating
psychological distress (a.k.a. existential suffering) is more difficult; there are no simple way to
evaluate existential suffering. Many physicians find the idea of sedation for psychological or
existential suffering to be ethically more challenging than similar treatment for physical suffering. In
either case, the decision to begin a trial of sedation is always difficult, requiring thorough patient
assessment and discussions with the patient, family and other team members.
Controversy still surrounds the use of sedation, due to it being confused with euthanasia. From an
ethical and legal standpoint, the key difference is intent. In euthanasia the intent is to hasten death.
In palliative sedation, the intent is to relieve severe intractable distress and suffering, not hasten
death. Of note, recent studies have found no difference in survival between hospice patients who
required sedation for intractable distressing symptoms during their last days and those who did not.
Refractory or Intractable Symptoms

A refractory symptom, that is, one in which total sedation may be appropriate, should have the
following three attributes: (1) aggressive efforts short of sedation fail to provide relief, (2) additional
invasive/non-invasive treatments are incapable of providing relief, and (3) additional therapies are
associated with excessive/unacceptable morbidity, unlikely to provide relief with a reasonable time
frame.
As soon as refractory symptoms occur (or are likely to occur), clinicians should begin preparing the
405
patient and family with compassionate, recurring discussions of treatment options. After the
physician (in consultation with palliative care experts) has determined that a symptom is refractory,
a time-limited trial of sedation should be discussed with the health-care team, the family, and the
patient. Discussions with children should be developmentally appropriate.
Caregivers and family members should understand the following:

1. The patient cannot be kept both awake and in a relative state of comfort.
2. Sedation at the end of life is the only reasonable means of providing comfort.
3. Such sedation results in loss of consciousness.
Guidelines for Terminal Sedation

• The patient must have a terminal illness
• All other palliative treatment options to relieve the cause of the patient’s severe distress and
suffering must be exhausted, including treatment for depression, delirium, anxiety, etc
• Medical, and psychological assessment by skilled physicians or specialists
• Spiritual assessment by a skilled physician, spiritual counselor, or clergy
• A DNR order must be in effect and informed consent obtained and documented
• Nutrition/hydration issues need to be addressed prior to sedation
• Consider Respite Sedation -- a time limited trial (usually 24 - 48 hours) in an attempt to break a
cycle of suffering.
Principles of Terminal Sedation

• Ascertain the actual need, exhaust all other palliative treatments, obtain informed consent from
the patient or surrogate decision maker, and document a current do-not-resuscitate order.
• Allow family members and staff to express any concerns. Address these concerns fully with
empathy and compassion. Once terminal sedation is chosen; all involved staff members must
be informed of the decision. Clarify the principles of terminal sedation with the staff if needed.
• Review the medication history to determine if the patient has experienced any adverse effects
(e.g., paradoxical agitation) with benzodiazepines. Agitation may be dose related, but once it
occurs, consider a different medication if possible.
• During and after sedation, reassess the patient frequently and watch for breakthrough
symptoms and adverse effects.
• When a patient is receiving opioid therapy, sedation may involve increasing the dose of the
opioid. However, opioid tolerance and sympathetic stimulation due to distress may prevent
adequate sedation. If the increased opioid dose causes unwanted side effects, decrease the
opioid dose to its previous level, and consider giving a second agent for sedation. Continue
opioids at a dose that adequately relieves symptoms such as pain or dyspnea.
• When opioids do not result in adequate sedation, simply increasing the dose is unlikely to
relieve a symptom or provide adequate sedation to achieve relief without accompanying toxicity.
Begin a rapidly acting adjuvant agent, such as a neuroleptic (chlorpromazine), benzodiazepine
(midazolam, lorazepam or diazepam), or barbiturate (phenobarbital). When the patient has no
history of adverse effects with a class of drugs, the selection of a sedating agent is based on
route availability, sedating properties, and duration of action.
• Commonly used are midazolam, thiopental, and propofol. Each has a relatively short time of
onset and requires continuous infusion. The benzodiazepine midazolam is a favorite agent due
to its easy availability, rapid onset, short half-life, and ease of use in subcutaneous infusions.
• If cessation of a short trial of sedation (24-48 hours) is followed by a complete return of
symptoms, sedation should be re-instituted and should probably continue until the patient dies.
406
On occasion, a family may request that sedation be withdrawn so they can interact with the
patient, particularly when the patient is a child. They should be reminded gently that sedation
was started because the patient could not be kept both conscious and free of significant
distress. Re-emphasizing and re-exploring the goals of care with the family can be helpful.
• If the family continues to request the withdrawal of sedation despite repeated explanations and
reassurance, a trial of lower doses of medication is warranted, with the understanding that
sedation should resume if the patient appears distressed.
• Even in a sedated state, patients can live much longer than expected. Because caregivers may
become very exhausted, planning for adequate rest, food, exercise, and talk with a trusted
listener are essential to the well-being of family members and professional caregivers.
Basic Steps in Terminal Sedation

Preparing for Possible Sedation
• Discuss thoroughly the proposed plan and expected outcomes with the patient (if able), family
members and medical staff who are involved in the case (physicians, nurses, therapists, nursing
aides, chaplain, etc.).
• Discuss plans for the use of artificial nutrition/hydration while the patient is sedated.
• Discuss and obtain informed concents for the proposed sedation procedure, and for DNR status.
Document informed consent and DNR discussion, and write DNR order.
• Create a peaceful, quiet setting, with minimal intrusions.
• Determine if there are any specific goals that need to be met before starting sedation (e.g. visit
from a family member). Help the patient/family meet these goalsprior to sedation.
• Determine if the patient/family wants religious/spiritual support prior to starting sedation. Refer to
their choice of relious/spiritual caregiver.
• Review medication and treatment orders. Discontinue medications and orders that do not
contribute to comfort (e.g. vital sign monitoring, blood glucose checks).
Starting Sedation
• Many drugs have been used to provide effective sedation. Midazolam, other benzodiazepines,
barbiturates and propafol are all effective.
• Although many patients are already on opioids prior to the start of sedation, opioids are not
effective at producing sustained sedation. However, opioids should be continued during
sedation, along with the sedating drug, to avoid opioid withdrawal and to treat unobserved pain.
• The following lists starting doses for the use of sedating drugs including the initial dose (lower
doses are usually used unless symptoms are very severe), and a starting continuous infusion
(CI) rate; the CI rate can be increased as needed to achieve the desired level of sedation. The
palliative care specialist should always be present during the initial hours of this intervention.
Midazolam (SC,IV) – Initial dose: A: 2-5 mg C: 0.05 mg/kg; then A: 1 mg/hr C: 0.02 mg/kg/hr
Lorazepam (SC,IV) – Initial dose: A: 2-5 mg C: 0.05 mg/kg; then A:1 mg/hr C: 0.02 mg/kg/hr
Thiopental (IV) – Initial dose: A: 2-6 mg/kg; then A: 20-80 mg C: 1 mg/kg qhour or as needed
Pentobarbital (IV) – Initial dose: 2-3 mg/kg; then 0.5-1 mg/kg/hr
Phenobarbital (IV,SC)- Initial dose: A:100-200 mg C: 1-3 mg/kg (can repeat q10-15 min) then A:
25 mg C: 0.05 mg/kg every hour, titrate as needed
Propofol (IV) – Initial dose: A: 20-50 mg C: 0.4-1 mg/kg; then A: 5-10 mg C: 0.1-0.2 mg/kg qhour
Continuing Sedation
• The depth of sedation that is needed depends on the symptoms being relieved; and on prior
discussions with the patient and/or family regarding the goals of sedation.
407
• Generally, the infusion is initiated and then titrated to a point where the patient appears to be
comfortable. A useful strategy is to decrease the sedative dose during the daytime, and provide
deeper sedation at night to ensure peaceful rest.
• Once terminal sedation is initiated, survival can be quite variable, but generally is brief. Muller-
Busch reports survival of 63 +/- 58 hrs after initiation of sedation, Sykes reports 56% of patients
survived less than 48 hrs.
Vigil
Anticipated death may be an opportunity for personal and spiritual growth for the patient and family,
and a chance for resolution and closure for some. Families often gather, and sit vigil at the bedside.
Actively involving the family in the plan to provide comfort to the patient may relieve anxiety, give a
sense of contribution, and facilitate healthy mourning and grieving.
Pronouncement of Death (Marchland and Kushner, 1998; Weissman, 2005)

Preparation
• Review the important facts and issues.
• Determine the circumstances of the death: expected or sudden?; who is present? Get the
details from the nurse.
• Has the family requested an autopsy? Do you see a value in requesting an autopsy?
• Is the patient an organ donor? If so, has the organ donor network been contacted?
In the Room
• If there are family members that you have not yet met before, introduce yourself (including your
relationship to the patient) to them. Ask each person their name and relationship to the patient.
• You can have a psychosocial or pastoral support person of the team, the nurse, or chaplain
accompany you; they can help comfort the family.
• Show and express empathy: "I'm sorry for your loss...” or "This must be very difficult for you...".
• Explain what you will do. Allow the family to stay if they wish, while you examine their loved
one.
• Ask if the family if they have any questions; provide them with clear, understandable answers.
The Pronouncement
• Identify the patient. Note the general appearance of the body.
• Make sure that the patient does not respond to verbal or tactile stimuli. Avoid clearly painful
tests if family members are present.
• Auscultate for the absence of heart sounds; palpate for the absence of carotid pulse.
• Check for the absence of spontaneous respirations.
• Determine the size and position of the pupils and the absence of pupillary light reflex.
• Record the day and time of your assessment.
Documentation in the Medical Record
• Called to pronounce (name); Chart your findings.
• Note date and time of death; Note if family and other physicians were notified.
• Note if family declines/accepts autopsy; Note if the coroner and/or funeral home was notified.
Determination of Death (Puswella, DeVita and Arnold, 2004)

Death can mean: the cessation of cardiovascular and pulmonary function, and/or the cesstion of all
brain functions- including those of the brainstem (also called brain death). Tests required for the
determination of death may vary depending on the institution or the area of practice. However,
determination of death and brain death generally involves the following steps:
408
• Identify and reverse any reversible causes of unconsciousness (and cardiorespiratory failure),
such as sedatives, neuromuscular blockers, hypothermia, and other causes.
• Evaluate for evidence of cardiovascular, respiratory, and brain activity.
• For brain death, there must be no:
-- spontaneous movement or movement in response to any stimuli- including painful stimuli (
non-pueposeful spinal reflexes may not be included)
-- cranial nerve reflexes- including papillary light reflex, corneal reflex, caloric reflex, and gag
reflex. For caloric testing, elevate the head approx. 30 degrees, and slowly infuse 30-50 ml ice
water into the ear canal, and observing for nystagmus (positive test); wait 5 minutes and test
the other ear canal.
• Sometimes, the vagal nerve is tested using atropine- give A: 2 mg C: 0.04 mg/kg IV atropine,
and observe for an increase in heart rate by about 10 bpm (positive test).
• The central respiratory drive can be assessed using the apnea test: Ventilate the patient with
100% oxygen and check the blood gases. Stop the ventilatory support while oxygen is
continued. Monitor oxygen saturation, and check blood gases after 5-10 minutes. Observe for
any ventilatory/ breathing effort before and once pCO2 is above 60 mm Hg (positive test). Stop
the test if the patient develops an arrhythmia, or hypoxemia (also indicates a non-functioning
respiratory center).
• Other confirmatory tests may be needed for complicated situations- eg uremic encephalopathy,
hepatic encephalopathy. This may include an:
-- EEG (should be isoelectric)
-- Tests for cerebral blood flow (eg radionuclide angiography, contrast angiography; a
Transranial Doppler checks for the absence of diastolic blood flow or small systolic peaks)
-- Somatosensory Evoked Potential (bilateral median nerve stimulation shows an absence of
N20-P22 response.
Notification of Death
• Family should be notified of the death as soon as possible.
• Organize your thoughts before speaking with the family. Review the important facts about the
case, the trerminal phase, and the death event.
• Summarize the events in clear compassionate language.
• Support, comfort, and show empathy.
• The family is comforted to know that the patient did not die with pain, distress, and suffering.
• Describe any comforting and helpful details- such as last wishes and words spoken.
• Give the family time to be alone; but inform them that you will return shortly.
• After the immediate family is notified about the death, offer to assist the family in informing other
relatives and friends.
• Institute and offer bereavement care and support.
Being with the Patient after Death

• If the family is willing, encourage and allow them to see the patient and say their good-byes.
• Always refer to the patient by name; don’t call the patient “it” or “the body.”
• If needed, prepare the family by describing to them how the patient looks.
• The patient should be cleaned, and the bed and room should be tidy. Remove any catheters
and tubes. Control any oozing fluid or blood. Clear any body fluids such as blood and vomitus in
order not to upset the family.
• Give the family time to be alone; but inform them that you will return shortly.
• Provide comfort and assistance.
409
Suggested Readings
Standard References
Standard Textbooks
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Medicine.Third Edition. New York: Oxford University Press; 2005.
UNIPAC Series
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of-Life Care. 2nd ed. Hospice/Palliative Medicine Self-Study Program for Physicians. Storey
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Terminally Ill. 2nd ed. Hospice/Palliative Medicine Self-Study Program for Physicians. Storey
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• Storey P, Knight CF. UNIPAC Three: Assessment and Treatment of Pain in the
Terminally Ill. 2nd ed. Hospice/Palliative Medicine Self-Study Program for Physicians. Storey
F, Knight CF, eds. Larchmont, NY: Mary Ann Liebert; 2003.
• Storey P, Knight CF. UNIPAC Four: Management of Selected Non—pain Symptoms in
the Terminally III. 2nd ed. Hospice/Palliative Medicine Self-Study Program for Physicians.
Storey F, Knight CF, eds. Larchmont, NY: Mary Ann Liebert; 2003.
• Storey P, Knight CF. UNIPAC Five: Caring for the Terminally Ill: Communication and the
Physician Role on the Interdisciplinary Team. 2nd ed. Hospice/Palliative Medicine Self-Study
Program for Physicians. Storey F, Knight CF, eds. Larchmont, NY: Mary Ann Liebert; 2003.
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the Terminally Ill. 2nd ed. Hospice/Palliative Medicine Self-Study Program for Physicians.
Storey F, Knight CL, ed. Larchmont, NY: Mary Ann Liebert; 2003.
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Index
Advance Directives, 291
Acetaminophen, 128
Adjustment, 57
Adjustment Disorders, 60
Adjuvant Drugs, 143
Adrenal Insufficiency, 238
Airway Obstruction, 238
Analgesic Ladder, 127
Anger, 73
Anorexia, 161
Antimicrobial Drugs, 256
Anxiety, 61
Approach, Palliative Care, 3
Art Therapy, 79
Ascites, 239
Autonomy, 285
Autopsies, 300
BATHE Approach, 43
Beneficence, 285
Benzodiazepines, 64
Bereavement, 112, 115
Biopsychosocio-spiritual Approach, 6
Bleeding, 241
Blood Component Therapy, 247
Bony Metastasis and Pain, 158
Bowel Obstruction, 167
Brain Metastases, 243
Breakthrough Pain, 139
Brief Focal Group Interventions, 100
Brief Pain Assessment Inventory, 124
Brief Strategic Family Therapy, 96
Burn-out, 54
Cachexia, 161
Cardiac Tamponade, 266
Cauda Equina Syndrome, 269
CEA Method, 50
Chemotherapy, 276
Chronic Obstructive Pulmonary Disease, 320
Chronic Pain Syndrome, 125
CLASS Protocol, 44
Cognitive Behavioral Interventions, 82
Cognitive Restructuring, 83
Coma, 347
Communication and Counseling Skills, 40
Communication, Children 53
Communication, Team, 54
Communication Protocols, EPEC, 46
429
Communicating Bad News, 45, 46
Community Palliative Care Services, 35
Competence, 287
Complicated Grief, 113
Confidentiality, 287
Congestive Heart Failure, 308
Conscious Sedation, 155
Constipation, 172
Coping, 55
Coping Strategies, 57, 86
Core Outcomes of Palliative Care, 4
Cough, 177
CPR, 292
Crisis Interventions, 85
Cyclo-oxygenase-2 (COX-2) Inhibitors 129
Death Event, 408
Death Pronouncement, 408
Death, Determination of, 408
Death Notification, 409
Death Rattle, 396
Decision-Making Capacity, 287
Decision Making Tool, 52
Dehydration, 250
Delirium, 180, 244, 397
Dementia, 344, 389
Depression, 65, 300
Developmental Tasks of Death and Dying, 26
Diarrhea, 188
Dialysis, 332
Dignity 19, 287
Distraction, 78, 92
Distress, 18
DNR Orders, 292
Double Effect, Principle Of, 286
Dysphagia, 191
Dyspepsia, 193
Dyspnea, 195
Eastern Cooperative Oncology Group (ECOG) Scale, 31
Edema, 200
Electrolyte Disorders, 259
Emergent Conditions, 238
Enteral Tube Feeding, 165
Equianalgesic Opioid Doses, 137
Ethical Principles, 285
Euthanasia, 298
Exercise, 79
Existential Issues and Problems, 111
Family, 21
Family Assessment, 21
430
Family Meeting and Counseling, 47
Family Centered Interventions, 93
Family Focussed Grief Therapy, 118
Family Therapy Approaches, 95
Fatigue, 204
Fecal Impaction, 176
Fentanyl, 142
Fever, 253
FICA Assessment Tool, 104
Fluid Support, 250
Forgoing Treatment, 293
Functional Assessment Staging Scale, 346
Fungating Tumor Masses, 226
Futility, 292
Gastroesophageal Reflux, 193
Gastrointestinal Bleeding, 242
Geriatric Palliative Care, 382
Adverse Drug Reactions, 389
Anxiety, 386
Confusion and Delirium, 383
Dyspnea, 385
Fatigue, 385
Falls, 389
Functional Capacity, 387
Depression, 386
Dehydration, 386
Gastrointestinal Problems, 386
Hearing Impairment, 384
Infection and Fever, 386
Nutritional Problems, 385
Pain, 391
Sleep Problems, 385
Urinary Incontinence, 386
Vision Impairment, 383
Gestalt Counseling and Interventions, 89
Grief, 112
Grief, Children, 118
Group Based Interventions, 99
Guided Imagery, 76
Heart Failure, 308
Hematologic Problems, 245
Hemoptysis, 243
Hemorrhage, massive, 399
Herth Hope Index, 109
Hiccups, 207
History, 2
HIV/AIDS, 302
Honesty, 286
Hope, 109
431
Hospice, 35
Hypercalcemia, 259
Hyperkalemia, 261
Hyperleukocytosis, 247
Hyperphosphatemia, 264
Hypnosis, 79
Hypnotic Drugs, 156
Hypocalcemia, 260
Hypoglycemia, 266
Hypokalemia, 263
Hypomagnesemia, 264
Hyponatremia, 265
Hypophosphatemia, 265
Infections, 251
Informed Consent, 287
Intentional Family Method, 50
Invasive Interventions for Pain Control, 150
Journaling, 83
Justice, 286
Karnofsky Performance Status, 30
Ketamine, 149, 157
Ketorolac, 130
Key Elements, Palliative Care, 4
Kidney Failure, 324
Dosage Adjustment, 334
Leadership Skills, 54
Life Narrative, 87
Liver Failure, 337
Dosage Adjustment, 342
Loss, 56
Lymphedema, 200
Malaria, 307
Management Plan, 9
Massage, Therapeutic, 78
Malignant Wounds, 120
McGill Quality of Life Questionnaire, 12
Meaning, Search For, 109
Meditation, 78
Metabolic and Electrolyte Disorders, 259
Methadone, 148
Models of Palliative Care, 1
Multidimensional Approach, 7
Multidimensional Assessment, 7
Multidrug Resistant Tuberculosis (MDR-TB), 305
Muscle Spasms, 208
Music Therapy, 76
Naloxone, 147
Nausea and Vomitting, 209
Neutropenic Fever, 253
432
Neuroleptic Medications, 185
Neurological Diseases, 343
Neuropathic Pain, 140
Non-abandonment, 286
Nonmaleficence, 285
Non-Opioid Analgesics, 128
Non-Pain Symptoms, 160
Nonsteroidal Anti-Inflammatory Analgesics, 129
Nutrition and Fluids, 404
Opioid Analgesics, 131
Conversion, 137
Drug Abuse Potential, 139
Infusions, 401
Inpatient Therapy Guide, 135
Equianalgesic Doses, 137
Rapid Titration, 136
Side-Effects, 138
Oral Problems, 216
Oral Secretions, 231
Pain, 121
Pain and Symptom Diaries, 125
Pain Assessment Tools, 123
Pain Syndromes, 122
Physical Interventions for Pain, 125
Principles of Analgesic Use, 127
Psychosocial Interventions for Pain, 126
Palliative Care Interventions, Forms of, 6
Palliative Care Programs, 34
Palliative Chemotherapy, 276
Palliative Medicine, 1
Palliative Performance Scale (PPS), 31
Palliative Prognostic Score, 32
Palliative Radiation Therapy, 281
Palliative Surgery, 279
Paracetamol, 128
Patient Populations, 5
Peaceful Awareness, 47
Pediatric Palliative Care, 348
Adjuvant Therapies, 371
Adolescent Patients, 357
Analgesic Medications, 372
Assessment of Pain, 367
Child Life Interventions, 380
Collaborative Care, 360
Commonly Used Drugs, 375
Communication with the Dying Child, 351
Concepts of Illness and Death, 353
DEGRR Scale, 367
FLACC Scale, 369
433
Pediatric Pain, 366
Pediatric Pain Profile, 368
Phases in a Sick Child’s Acquisition of Information, 353
Psychosocial Interventions, 359, 380
Siblings, 357
Spiritual Care, 381
Symptom Management, 361
Performance Status Scales, 30
Pericardial Effusion, 266
Persistent Vegetative State, 347
Physician Assisted Suicide, 298
Play Therapy, 91
Pleural Effusion, 267
Pressure Ulcers, 223
Problems and Needs in Palliative Care Questionnaire (PNPC), 15
Process of Providing Palliative Care, 10
Professional Integrity, 287
Prognosis, 28
Pruritus, 227
Psychoeducation, 75
Psychosocial Approaches and Interventions, 74
Psychosocial Distress Continuum, 55
Psychosocial Interventions for Children, 90
Psychosocial Problems, 55, 402
Quality at the End of Life Instrument, 13
Quality of Life, 11
Rabies, 306
Radiation Therapy, 281
Refractory Pain and Other Symptoms, 148, 237
Reframing, 83
Relaxation Techniques, 75
Religion, 298
Religious Care, 111
Respect for Life and Death, 286
Respiratory Diseases, 319
Respiratory Secretions, 231, 396
Role Playing, 87
Routes for Drug Administration, 152
Secretions, 231, 396
Sedation, 154, 404
Sedatives, 156
Seizure, 268, 399
Self Monitoring, 83
Self Suggestion, 83
Sepsis and Septic Shock, 252
Settings for Palliative Care, 34
Skills Training, 87
Sleep Problems, 232
SPIKES Protocol, 45
434
Solo Specialist Model, 7
Spinal Cord Compression, 269
SPIRIT Spiritual History Tool, 105
Spiritual Assessment, 103
Spiritual Care Interventions, 106
Spiritual Coping, 106
Spiritual Counseling, 103
Spiritual Need, Dimensions of, 108
Spiritual Problems, 101, 402
Spirituality and Religion, 102
Standards of Palliative Care, 1
Stress, 54
Stroke, 271
Subcutaneous Administration, 152
Suffering, 18
Suicide, 72
Superior Mediastinal Syndrome, 272
Superior Vena Cava Syndrome, 272
Support Groups, 101
Supportive Counseling, 44, 80
Surgery, 279
Syndrome of Imminent Death, 394
Team Model, 7
Terminal Symptoms, 394
Death Rattle, 396
Delirium, 397
Dyspnea, 394
Fever and Diaphoresis, 399
Hemorrhage, Massive, 399
Myoclonus, 399
Nausea and Vomiting, 398
Pain, 400
Seizure, 399
Urinary Retention, 400
Terminal Therapeutic Sedation, 404
Therapeutic Proportionality, 286
Thought Stopping, 85
Total Pain, 121
Truthfulness, 286
Tuberculosis (TB), 305
Tumor Lysis Syndrome, 273
Urinary Problems, 234
Vigil, 408
Virtue and Professional Integrity, 287
Voluntary Cessation of Eating and Drinking, 296
Volunteers, 36
Vomiting, 209, 238
Withdrawal and Withholding Treatment, 295, 301, 403
435
436

Medina: Manual of Palliative Medicine 2nd Ed (Complete)

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Medina: Manual of Palliative Medicine 2nd Ed (Complete)

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Manual of

Supportive, Hospice and Palliative Care

You matter because you are you.

Supportive, Hospice and Palliative Care

Manuel F. Medina, Jr., MD

c 2005, 2007 Manuel Medina, Jr., M.D.

First edition published 2005

Printed in the Philippines

Whose love for her pediatric cancer patients

Whose smile and laughter give me and Mia

2. Communication and Counseling in Palliative Care 40

3. Evaluation and Management of

Spiritual Problems 101

4. Evaluation and Management of Pain 121

5. Evaluation and Management of

6. Evaluation and Management of

7. Palliative Chemotherapy, Surgery and

8. Ethical and Legal Aspects of Palliative Care 285

9. Palliative Care of Patients with

10. Palliative Care of Pediatric Patients 348

11. Palliative Care of Geriatric Patients 382

12. Palliative Care during the Terminal Phase and

Suggested Readings 401

Manuel Medina, Jr., MD

Models and Standards of Palliative Care

Definition of Palliative Care

History: Middle Ages to the 21st Century

Modern Palliative Care Approach (Frager, 1996)

Modern Palliative Care Structure of Care Delivery

Supportive Active Hospice Bereavement

Modern Palliative Care Structure of Care Delivery

■ Patient Population: Patients of all ages experiencing a debilitating chronic or life-threatening

Patient Populations (NCP, 2004)

Active or Disease-Modifying Interventions

The Bio-Psycho-Socio-Spiritual Approach to Care

Comprehensive Multidimensional Approach of Palliative Care

Disease Management Management of

Loss, Grief, Management of

Multidimensional Assessment in Palliative Care

Process of Developing a Management Plan

• Do an Initial Multidimensional Assessment (MDA)

Process of Providing Palliative Care During Sequential Encounters

The process of providing palliative care involves sequential physician-patient/family encounters.

Intake Ongoing Care Discharge

Patient & Family DEATH Family

Quality of Life Assessment Instruments

Quality of Life Assessment Instruments should be:

McGill Quality-of-Life Questionnaire (MQOL) (Cohen et al, 1995)

Measuring the Quality of Life of Seriously Ill Patients

Symptom #1 ___________________ Symptom #2 ___________________

Now, I have one last question.

The PNPC asks 2 questions at each item:

Suffering and Distress

Some Sources of Distress and Suffering of the Patient

Dignity Conserving Care Approach in Palliative Medicine (Chochinov et al, 2002)

Illness Related Concerns Dignity

Illness-Related Concerns (physical and psychological domain)

Dignity Conserving Perspectives

Dignity Conserving Practices

Social Dignity Inventory (psychosocial domain)

Specific Tools and Methods for Family Assessment

Areas of Inquiry for Outlining the Family’s Strengths and Vulnerabilities

Illness and History

Factors that Place Families At Risk

Symptom #1 _ Symptom #2 _