END OF LIFE CARE

INTRODUCTION
Life and death is the two main stages in a human beings of life, where we come across many
challenges, diseases and other problems. Olden days persons with chronic diseases, terminal
illness and dying is viewed as taboo topics due to which few new concepts developed for the
care of person who is at their end stage, one of those topics is end of life. End-of-life care
requires a range of decisions, including questions of palliative care, patients' right to selfdetermination (of treatment, life), medical experimentation, the ethics and efficacy of
extraordinary or hazardous medical interventions, and the ethics and efficacy even of continued
routine medical interventions.
DEFINITION
End of life is the concluding phase of normal life span although life can end at any age.
End-of-life care (or EoLC) refers to health care, not only of patients in the final hours or days of
their lives, but more broadly care of all those with a terminal illness or terminal disease condition
that has become advanced, progressive and incurable.
GOALS OF END OF LIFE CARE
Provide comfort and supportive care during process
Improve the quality of remaining life
Help to ensure dignified death
PHYSICAL CHANGES AT END OF LIFE
Sensory changes : Its mainly due to decrease oxygenation and circulatory changes.
Hearing and touch : Decreased perception of pain, touch and sensation
Taste and smell : Decreases with disease progression, blurring of vision, blinking reflex
absent
Integumentary System : Cold, clammy skin. Wax like skin due to loss of muscle tone,
cyanosis on nose, nail beds, knees due to decrease oxygenation and circulatory changes
Cardiovascular System : Pulse rate increases and slows down later and becomes weak,
blood pressure decreases, elevation in the body temperature due to changes in
hypothalamic function and delayed absorption of drugs
Respiratory System : Increased respiratory rate, Cheyne stroke respiration, death rattle,
irregular breathing.
Urinary System: Urinary output decreases due to loss of ability to form urine,
incontinence of urine & unable to urinate.

 Gastrointestinal System: Slowing of digestive tract, accumulation of gas due to

decrease gastric motility and peristalsis which lead to constipation.
Musculoskeletal System: Gradual loss of ability to move, difficulty in speaking and
swallowing, maintaining body posture, due to weakening of muscular system because of
metabolic changes.
PSYCHOLOGICAL CHANGES AT END OF LIFE
A variety of feelings and emotions affect the dying patient and family at the end of life.
Most patients and family struggle with a terminal diagnosis and the realization that there
is no cure.
Grief : is the emotional and behavioural changes to loss it is a positive coping mechanism
which also helps in individual well being.
ETHICAL, LEGAL AND COMMUNICATION ISSUES AT END OF LIFE
1) Assessing decision making capacity
The physician must assess the capacity of a given individual to take decision
for medical interventions
Decisions about competence are judicial determinations that involve ruling on
the patients global decision making ability.
Many people decide that the outcomes related to their care should be based on
their own wishes.
2) Legal documents used in end of life care
Advance directives: They are specific instructions, prepared in advance,
intended to direct a persons medical care in the event that he/she is unable to
do so in the future.
Durable power of attorney: A legal document that allows an individual to
appoint someone else to make medical or health care decisions in the event the
individual becomes unable to make and or communicate such decisions
personally.
Medical power of attorney: Its a term which describes a document used for
listing the person to make healthcare decisions when the patient is unable to
make decisions for self.
Directive to physicians : Under this acts patient can tell the physician that
what treatment is or is not desired. Verbal directives are given to physicians
with specific instructions in the presence of two witness.
Organ and tissue donation : The decisions to donate organs or to provide
anatomic gifts may be made by a person before death and family permission
must be obtained at the time of donation. These peoples will have the ID Card
given by the agencies.

 Euthanasia : It refers to the practice of ending life in a painless manner. Many

forms of euthanasia can be distinguished like voluntary and involuntary.
Euthanasia by conscent : Euthanasia may be conducted with conscent or
without conscent. Involuntary Euthanasia is conducted where an individual
makes a decision for another person incapable of doing so.
Assisted suicide: It is a form of euthanasia where the patient actively takes the
last step in their death. The term assisted suicide is contrasted with active
euthanasia when the difference between providing the means and actively
administering lethal medicine is considered important.
Resusitation: In recent days its the right of the patient and the family to decide
whether resuscitation to be done. For every patient physician order is
compulsory for the use of CPR.
TYPES OF CPR DECISIONS
FULL CODE: which allows CPR drugs and mechanical ventilation
CHEMICAL CODE: allows use of chemical drugs but no CPR
NO CODE OR DO NOT RESUCITATE: which allows the person to
die comfortably without interference of the technology
Advanced directives, organ donation information and doctors orders should be recorded in both
medical and nursing record.

ASPECTS OF END OF LIFE CARE

I . HOSPICE
Definition
Hospice is a concept of care that provides compassion concern and support for the dying.
Hospice care can be given by trained professionals.
Goals of Hospice care

Services

To enable the patient to continue an alert

To provide pain free life
To provide symptomatic treatment
To give social emotional and spiritual support to the patient
To improve quality of life during the last stages of advanced illness

An interdisciplinary health care team include doctors, nurses, social workers, counselors, home
health aids, clergy, therapist and trained volunteers manage hospice care. The services include
Pain and symptom control: The goal is to help the patient be comfortable while
allowing to stay in control and enjoy the life and make important decisions.
Respite care: Hospice service may offer them a break through respite care, which is
often offered in up to 5-day period. Families can plan a mini-vacation, go to special
events etc.
Family conferences: It gives a chance to share feelings, talk about expectations and learn
about death and the process of dying. Family members can find great support and stress
relief through family conferences.
Bereavement care: It is the time of mourning after a loss. The team works with
surviving loved ones to help them through the grieving process through visits, phone calls
etc. These services are often provided for about a year after the patients death.
Volunteers: Volunteers may be health professionals or lay people who provide services
that range from hands-on care to working in the hospice office or fund raising.
Staffs support: Hospice care staff members are kind and caring. They communicate
well, are good listeners and are interested in working with families who are coping with
life-threatening illness.
Hospice Care Settings
Hospice care may be provided in home or in a special facility. They are :
Home hospice care
Hospital based hospices
Independently owned hospices
Home hospice care
Here the person is with the patient most of the time and is trained by the nurse. Members of the
hospice staff will visit regularly to check on the patient and family and give needed care and
services.
Hospital based hospices
Hospitals that treat seriously ill patients often have a hospice programme. This arrangement
allows patients and their families easy access to support services and health care professionals.

Independently owned hospices

Many communities have free-standing, independently owned hospices that feature

care buildings as well as home care hospice services.

inpatient

II. PALLIATIVE
Definition
Palliative care is an approach that improves the quality of patients and their families facing the
problem associated with life threatening illness, through the prevention and relief of suffering by
means of early identification and assessment and treatment of pain and other problems, physical,
psychological and spiritual.
Goals of palliative care
To prevent or treat the symptoms of the diseases, side effects caused by treatment of the
disease
To provide quality of life to patient and their family
To emphasize management of psychological, social and spiritual problems
To give symptomatic treatment to the patient
PALLIATIVE CARE TEAM
Several health care professionals may participate as part of a team to give palliative care.
1. Doctor : The doctor serves as the health care team leader and makes treatment plans and
decides on medication and dosing and may consult with other doctors such as a pain
specialist or a radiation oncologist.
2. Nurses: The nurse gives direct care to the patient and helps with managing pain and other
side effects of cancer and its treatment.
3. Social worker: They may help with financial issues, arrange family meetings and helps
with the discharge from the hospital to home or hospice care.
4. Hospital chaplain or other spiritual advisor: They counsels the patient and family
members on religious and spiritual matters.
5. Dietitian : A dietitian helps the patient and family members plan healthy meals and
addresses nutritional concerns.
6. Physical therapist: A physical therapist helps the patient to maintain movement and helps
when the patient has difficulty moving around. They also addresses safety concerns in the
home.
7. Grief and bereavement co-ordinator : This professional counsels the patient and family
members and helps with planning memorial services.

PALLIATIVE CARE SERVICES

Some organizations that provide information and referrals to hospice and palliative care are:
1) National Hospice and Palliative Care Organization
2) Center To Advance Palliative Care
3) Hospice Education Institute
III. PREPARATION AT THE END OF LIFE
Despite a doctors best efforts and hard work, diseases treatment sometimes stops working
and a cure for long-term remission is no longer possible. This stage of illness is called
advanced, terminal or end stage.
Grieving your losses
Learning that persons illness has become terminal can bring about intense feelings of
anger, fear, grief, regret and other strong emotions
It is normal to grieve and mourn the loss of your abilities, the loved ones you will
leave behind and the days you will not have
Talking about your feelings and concerns with family, friends and care givers can
help bring you comfort
Getting your affairs in order, completing unfinished business and reviewing your life
are important steps in accepting death and finding peace.
Spirituality at the end of life
The spiritual assessment is a key component of comprehensive nursing assessment
for terminally ill patients and their families. The nurse should explore:

The harmony between the patients and family beliefs.

Other sources of meaning , hope and comfort
The presence or absence of a sense of peace of mind and purpose of life

IV. ADVANCED DIRECTIVES

Advanced directives are legal documents that explain the kind of medical treatment you
would want and would not want if you become unable to make these decisions for yourself.

Making an Advance directive

Any adult who is mentally and physically able to understand his or her medical condition and
express his or her preferences can make an advance directive.

1. In most states, an advanced directive can be oral, although it is less likely to be

challenged if it is in writing.
2. Most, but not all, states honor an advance directive made in other states.
3. If you move to another state, it is a good idea to complete a new advance directive. It is
important that you and other people involved in decisions about your health care have
accessible copies of your advance directive.
4. Copies should also be given to any institution where you are treated and where you live.
At this time, there is no advance directive form that is valid in all 50 states.
5. Check your states requirements and guidelines about advance directive documents.

Types of Advance directive

a) Living will: This is a written set of instructions outlining your wishes about types of
medical care you may or may not want in order to sustain life.
b) Durable power of attorney for health care: This type of advance directive
designates a person that will make medical decisions for you if you become unable to
make them yourself. Any competent adult age 18 or older can be a health care agent.

V. UNDERSTANDING CPR AND DNR

A DNR order is a type of advance directive, a document that instructs medical personnel that
you do not wish to receive CPR if your heart and or breathing stops. Once completed your
DNR order is added to your medical record.
VI. CARE DURING THE FINAL DAYS
Treatment for end stage focuses on keeping the person comfortable and free of pain as he or
she approaches the end of life. It is important to know that care will continue until the end of
life and that everything possible will be done to ensure that death will be peaceful and
dignified.

STAGES OF DYING
According to Kubler-Ross , there are five stages of dying.

i.
ii.
iii.
iv.
v.

Denial: Feelings of isolation. May search for another health care professional who
will give a more favorable opinion.
Anger : Feelings of range, resentiment or envy directed at God, health care
professionals family or others.
Bargaining: Patient and or family plead for more time to reach an important goal.
Promises are sometimes made with God.
Depression: sadness, grief mourning for impending losses.
Acceptance: patient and or family are neither angry nor depressed.

THE SIGNS OF APPROACHING DEATH

1. Loss of appetite
2. Excessive fatigue and sleep
3. Increased physical weakness
4. Mental confusion or disorientation
5. Labored breathing
6. Social withdrawal
7. Changes in urination
8. Swelling in the feet and ankles
9. Coolness in the tips of the fingers and toes
10.Mottled veins

NURSING PROCESS

1. Chronic pain related to progress of diseases as manifestated by facial expression.

Interventions
Assess pain thoroughly and regularly to determine the quality, intensity and location
Minimize irritants such as pressures
Provide diversional therapy such as music
Administer drug as per order
Evaluate effectiveness of pain relief measures frequently.
2. Deficient fluid volume related to less intake of food and fluids as manifestated by
dehydration.
Interventions

Assess condition of mucus membrane to prevent excessive dryness

Maintain regular mouth care to maintain hydration of mucus membrane
Encourage the patients to have sips of water and ice chips
Apply lubricants to lips and mucus membrane

3. Imbalanced nutrition less than body requirement related to dysphasia as

manifestated by weakness.
Interventions

Arrange regular meal time

Have the diet as favourable to patient
Allow family members to be present during meal time
Suction the patient before meal time
Provide medicines as per order

4. Constipation related to immobility and less intake of fluid as manifestated by

abdominal discomfort.
Interventions

Assess the bowel pattern of the patient

Encourage movement and exercises as tolerated
Encourage fiber rich diet
Encourage the patient to take fluid
Use suppositories, laxatives or enema if ordered

5. Nausea related to complication of drugs and disease as manifestated by weakness

Interventions

Assess the patient for complaints for vomiting and possible causes
Discuss modification to the drug regimen with health care provider
Provide frequent mouth care
Offer frequent meals
Administer antiemetic agents as per order

6. Anxiety related to lonliness as manifestated by facial expression

Interventions

Assess the anxiety level of the patient

Advice the patient attendees to spend time with the patient
Talk to patient and provide psychological support
Do not allow the patient to be alone, keep him engaged with some work
Provide medicine as per order

7. Skin integrity related to immobility and incontinence of urine as manifestated by

dryness
Interventions

Assess the condition of the skin

Prevent skin breakdown by mobilizing or keeping the skin clean from urine
Use absorbent pads for urinary incontinence
Discuss about the condom catheter with consultant
Apply petroleum jellies at the area of skin irritation

8. Disturbed sleeping pattern related to related to anxiety as manifestated by weakness

Interventions

Assess the sleeping pattern and level of anxiety of the patient

Allow the patient attenders to talk with him
Talk to patient about his concerns
Provide calm environment during night time
Administer medicine to reduce anxiety as per order

9. Self care deficit related to depression as manifestated by facial expression

Interventions
Assess the psychological status of the patient

 Advice the patient attenders to spend time with the patient

Talk to patient and provide psychological support
Dont allow the patient to be alone, keep him engaged with some work
Advice the patient to do his daily routine
Talk with consultant and arrange for counseling
Provide anti depressants as per order
10. Spiritual distress related to sense of abandonment by God and loss of significant
others
Interventions
Assess the psychological status of the patient
Allow patient to do spiritual activities without any disturbance
Talk to patient and provide psychological support
Talk with consultant and arrange for counselling
11. Ineffective coping related to impairment of body function as evidenced by
depression
Interventions

Assess the level of coping

Talk to patient and provide psychological support to the patient
Encourage the patient to express and share his feelings
Provide symptomatic treatment to the patient

12. Disturbed family pattern related to terminal illness as evidenced by significant

deviations in daily routine
Interventions

Provide psychological support to the family members

Encourage the family members to spend more time with patient
Provide counseling to the patient and family members
Maintain calm and quite environment

THEORY APPLICATION
I would like to apply Virginias Henderson Need Theory in this topic. Virginia Henderson is
the Nightingale of Modern Nursing. According to Henderson there are fourteen components
needed for providing effective nursing care. Virginia Hendersons need theory is considered close
to realism.

Nursing
Ms. X
Henderson's 14 Components

Assessment

of

Assessment Findings

1.

Breathing normally

She was experiencing difficulty in

breathing. Irregular respiration.

2.

Eat and drink adequately

Less intake of food and fluids

3.

Elimination of body wastes

4.

Movement and Posturing

5.

Sleep and Rest

Foley's catheter was in placed.

Administered enema
Fatigue , difficulty in walking, Gait
imbalance
Experiencing insomnia

6.

Select suitable clothes-dress and undress

Wearing loose fitted dirty dress.

7.

Maintain body temperature

Signs of hypothermia;

8.

Keep the body clean and well groomed

She had no interest to keep her

body clean and groomed due to
social withdrawl.

9.

Avoid dangers in the environment

10.

Communication

She had difficulty in speaking

11.

Worship according to ones faith

12.

Work accomplishment

Religion; Islam, mother reported

that she was not spiritual
Lost interest in self-care and
inability to perform activities

13.

Play or participate in various forms of

Recreation

She had lost physical strength and

developed weakness

14.

Learn, discover, or satisfy the curiosity

Finding difficult to cope with her

stress and present illness

JOURNAL / e -PRESENTATION

Dying in the hospital setting: A systematic review of quantitative studies identifying the
elements of end-of-life care that patients and their families rank as being most important
Abstract
Background: The majority of expected deaths occur in hospitals where optimal end-of-life
care is not yet fully realised, as evidenced by recent reviews outlining experience of care.
Better understanding what patients and their families consider to be the most important
elements of inpatient end-of-life care is crucial to addressing this gap.
Aim and design: This systematic review aimed to ascertain the five most important elements
of inpatient end-of-life care as identified by patients with palliative care needs and their
families.
Data sources: Nine electronic databases from 1990 to 2014 were searched along with key
internet search engines and hand searching of included article reference lists. Quality of
included studies was appraised by two researchers.
Results: Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and
3117 families. Synthesis of the top five elements identified four common end-of-life care
domains considered important to both patients and their families, namely, (1) effective
communication and shared decision making, (2) expert care, (3) respectful and
compassionate care and (4) trust and confidence in clinicians. The final domains differed
with financial affairs being important to families, while an adequate environment for care and
minimizing burden both being important to patients.
Conclusion: This review adds to what has been known for over two decades in relation to
patient and family priorities for end-of-life care within the hospital setting. The challenge for
health care services is to act on this evidence, reconfigure care systems accordingly and
ensure universal access to optimal end-of-life care within hospitals.

SUMMARY

bridgeshireandpeterboroughccg.nhs.uk

In medicine, nursing and the allied health professions, end-of-life care (or EoLC) refers to
health care, not only of patients in the final hours or days of their lives, but more broadly care of
all those with a terminal illness or terminal disease condition that has become advanced,
progressive and incurable. End-of-life care requires a range of decisions, including questions
of palliative care, patients' right to self-determination (of treatment, life), medical
experimentation, the ethics and efficacy of extraordinary or hazardous medical interventions, and
the ethics and efficacy even of continued routine medical interventions. In addition, end-of-life
often touches upon rationing and the allocation of resources in hospitals and national medical
systems. Such decisions are informed both by technical, medical considerations, economic
factors as well as bioethics. In addition, end-of-life treatments are subject to considerations
of patient autonomy. "Ultimately, it is still up to patients and their families to determine when to
pursue aggressive treatment or withdraw life support."

CONCLUSION
In the recent years end of life care concept is increasing in the society because of various reasons
and it is necessary that someone nearby death should spent his life peacefully with the help of all
medical and nursing group and the family. End-of-life often touches upon rationing and the
allocation of resources in hospitals and national medical systems. Such decisions are informed
both by technical, medical considerations, economic factors as well as bioethics. In addition,
end-of-life treatments are subject to considerations of patient autonomy. "Ultimately, it is still up
to patients and their families to determine when to pursue aggressive treatment or withdraw life
support."

BIBLIOGRAPHY
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1. Henderson,V.(1986). Some observations on health care by health services or health
industries. Journal of Advanced Nursing, 54(1), 1-2.
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Internet
1. https://en.wikipedia.org/wiki/End-of-life_care
2. www.ncbi.nlm.nih.gov/pubmed/22990423
3. hospicefoundation.ie/hospice/hospice-palliative-and-end-of-life-care/