HOSPICE CARE & END of LIFE

CARE
Hospice care provides medical care and support
services to a patient with a terminal illness where
the focus is on quality of life rather than life
prolongation or cure. The hospice philosophy
embraces the general principle of a comfortable death
with dignity: the care and treatment provided are based
on the patient and familys goals and values. The hospice
model is one of interdisciplinary team care that provides
comprehensive care by addressing the physical,
psychological, social, and spiritual aspects of suffering.
HOSPICE SETTINGS
Hospice care can be provided in
1.Hospital
2.nursing homes,
3. freestanding hospice inpatient facilities.
4.patients own home
HOSPICE AS A PALLIATIVE CARE
Palliative care focuses on preventing and relieving
suffering and on supporting the best possible
quality of life for patients and their families facing
serious illness. Within an integrated model of medical

care, palliative care is provided at the same time as

curative or life-prolonging care. Hospice is a model of
palliative care that is offered to patients at the end of life
when curative or life-prolonging therapy is no
longer indicated. While all care that is delivered by
hospices can be considered palliative care, not all
palliative care is delivered through hospice
programs.
'Who is a candidate for hospice?
Hospice services become appropriate
Patient has a terminal illness with prognosis of
less than 6 months.
when patients and their families decide to forego
curative therapies in order to focus on maximizing
comfort and quality of life,
when curative treatments are no longer beneficial,
when the burdens of these treatments outweigh
their benefits, or
when patients are entering the last weeks to months
of life.
For patients with a non-cancer terminal illness, it
may be difficult to identify a population with a
survival prognosis of six months or less. Clinicians
should err on the side of making the referral for
chronically ill patients with decreased functional
status, poor quality of life, physical and psychological
distress, family caregiver burden and stress under
circumstances where the goals of care are comfort,
being at home, and staying in control

SERVICES PROVIDED
While symptom control is one of the most important
services provided by hospice, other services include
nursing care and support at home, psychosocial and
spiritual care, respite care, and bereavement care.
In the US, home hospice care for patients over 65
years of age or for those who have been disabled
for longer than two years is covered through
Medicare. Medicaid and most private insurers also
cover hospice care. Eligibility for hospice under the
Medicare program requires the
Medicare-approved hospice
1.The patient must sign a statement choosing
hospice care instead of regular Medicare.
The patient's personal physician and the hospice medical
director both must certify that the patient has a terminal
CV illness and is likely to live for fewer than six

months if the disease follows its usual course.

The advantages of hospice care include

comprehensive interdisciplinary care, support to care for
dying patients in the home (including 24-hour phone
access to on-call nurses and clinicians, seven days per
week), and reduction in out-of-pocket expenses for
related medical costs, including medications and durable
medical equipment. Some limitations include reliance
on family or private pay caregivers to help attend

to daily needs of patients and the restriction of

insurance coverage for some life-prolonging or
expensive palliative treatments including specific
anticancer treatments.
However, patients may leave and return to the hospice
program at any time, as long as they continue to meet
the eligibility criteria (including a prognosis of under six
months
Studies have shown that early discussions of hospice as a
care option, which also include acknowledgment of the
serious and fatal nature of the patients underlying
disease, can increase the likelihood of future hospice
enrollment.
Adequate control of pain and other symptoms
Achieve a sense of control
Relieve burden on family members and
strengthening relationships
Gain a realistic understanding of the nature of the
illness
Understand the pros and cons of available treatment
alternatives weighed in context of the patients goals
and values
THE HOSPICE CARE RECIEVER MUST
Name decision makers in case of loss of
decisional capacity
Have financial affairs in order

NON pain symptoms

While pain is not the most common symptom, it is the

most distressing and feared symptom by both patients
and their families. Opioids are the mainstay of therapy
for cancer-related pain.
Most patients in the terminal phase of a serious and/or
life-threatening illness such as cancer develop gradually
worsening physical and psychosocial symptoms in the
weeks and months before death Terminally ill patients,
particularly those with advanced cancer, often present
with multiple symptoms simultaneously and are
frequently severely asthenic and distressed. Periodic
symptom reassessment is valuable for setting treatment
goals, monitoring the response to specific symptomatic
interventions, and for communicating between members
of the health care team.
1. Fatigue is a common typically multi-dimensional
symptom, often with multiple contributing causes.
Management includes aggressive treatment of
reversible causes, if any are identified . If a specific
cause cannot be identified, symptomatic
management (ie, with a short trial of a
glucocorticoid, or megestrol acetate ) is appropriate.
2 .For patients with nausea, if a potentially reversible
cause cannot be identified, and bowel obstruction is ruled
out, symptomatic treatment with prokinetic agents such
as metoclopramide is often helpful.
3.Cancer/ chemotherapy related anorexia Progestin
analogues

4. Cancer/ chemotherapy related vomiting 5 HT3

receptor antagonist ( ondansetron)
5.Treatment of constipation initially starts with
addressing underlying, potentially reversible factors .If a
reversible cause cannot be identified and modified,
symptomatic treatment, initially with senna , is
appropriate.
6.Frequent oral hygiene is the first step in treating
xerostomia. Rinsing with cold water, sucking on ice
chips, chewing sugarless gum to increase
salivation and artificial saliva may provide comfort.
Potentially beneficial approaches for patients who have
radiotherapy-related xerostomia include acupuncture and
oral pilocarpine
The great majority of patients in the terminal phase of an
advanced serious or life-threatening illness experience
reduced oral intake because of loss of appetite,
generalized weakness, nausea, vomiting, or impaired
cognition. For the vast majority, there is no evidence
that artificial nutrition prolongs life or improves
functional status and it is not indicated, particularly in
those with cachexia-anorexia syndrome.

7. parentral HYDRATION -The possibility that

dehydration may contribute to suffering and hasten death
in patients at the end of life has generated strong debate
with arguments for and against parenteral fluid
administration. A single randomized trial conducted in

terminally ill cancer patients provides some evidence that

parenteral hydration can result in palliation of some
symptoms. However, decisions regarding the use of
parenteral hydration should be individualized, and involve
the patient, family, and other healthcare professionals,
with a careful assessment of potential benefits and
drawbacks.
8.Depression is the most common mental health
problem encountered in palliative medicine, yet it is
widely underdiagnosed and undertreated. Individuals who
suffer from depression are at high risk of suicide, and
they may express to healthcare providers a desire for a
hastened death. Failure to diagnose and treat depression
impairs the quality of life of dying patients, and adds to
their burden of suffering. Tx is SSRI.
9.Delirium is common in palliative care, and there are a
number of contributing factors, especially opioids and
other drugs. Haloperidol is the drug of choice for the
symptomatic management of medically ill patients
presenting with delirium, especially when there is
evidence of psychomotor agitation, delusions, or
hallucinations.
10. In the last hours of life, increased airway
secretions may interfere with a patients ability to sleep,
worsen dyspnea, precipitate uncomfortable coughing
spells, increase caregiver distress, and predispose to
infection. Reassuring the patients family, proper
positioning, allowing patients to suction the secretions

when they have the capacity to do so, and judicious use

of anticholinergic medications may help
11.Effective treatment will successfully alleviate the
majority of symptoms that arise in terminally ill patients.
Palliative sedation may be indicated for patients in the
last stages of life who have refractory symptoms that
cannot otherwise be alleviated by an interdisciplinary
palliative care team

DISCUSSING PROGNOSIS
When to discuss prognosis Ideally, prognosis
discussions should take place when the patient is not ill
and is therefore better able to process and understand
information, and is not overwhelmed by anxiety due to an
acute medical event. Unfortunately, these discussions too
often are initiated after acute deteriorations or
progression of disease Patients may be overwhelmed with
anxiety and there is evidence to suggest that patients
tend to opt for highly aggressive therapies when
they are anxious or experiencing strong emotions].
A study of 1231 patients with stage IV lung or colorectal
cancer found that patients who have end-of-life
discussions with their physician prior to the last
month of life were less likely to receive highly
aggressive care, such as hospitalizations and
chemotherapy .

How to discuss prognosis As with any discussion in

which clinicians need to share bad news with patients,
clinicians need to prepare in advance for the discussion
.This includes making sure the discussion will take place
in a private setting without disturbances such as
frequent pager calls. Patients should have the support of
a caregiver, if desired, to provide support and help
process and interpret the prognostic information.

Stepwise strategy for discussion A stepwise strategy

for such discussions is presented as a general guide,
recognizing that clinicians will adapt this approach to the
case at hand and their own communication style:

Step one: Place the prognosis discussion in

context. A discussion of prognosis rarely occurs in a
vacuum, and is almost always tied to treatment
decisions. Clinician should explain that an understanding
of prognosis can be helpful, or even critical, to making
informed health care decisions and life choices

Step two : Ask patients and families about their

own understanding of prognosis. This can be
accomplished with a question such as:

So that I can understand where we are starting from, I

wonder if you have some general sense of how much
time you might have, and how you came up with that
information?
This step is often overlooked. However, studies of
surrogates of critically ill patients suggest that families
rarely rely on clinicians alone for prognostic information.
In one study of 179 surrogates of critically ill patients,
less than 2 percent relied exclusively on clinicians for
prognostic information .Other sources of information used
by patients and families include their own observations
about the trajectory of illness, the patients will to live,
their sense of optimism, and faith. Being aware of the
understanding of the patient and family about prognosis,
and the reasons for their perception, is a critical starting
point for clinicians, who may later wonder why their
prognostic estimates were not believed.

Step three : Negotiate the content of the

prognostic discussion with patients and families.
Preferences for receiving prognostic information vary,
with some patients preferring qualitative estimates,
others quantitative statistics, or best and worst case
scenarios. Some may prefer to discuss the numbers,
while other patients may prefer to receive information
visually. A number of decision aids have been developed
for these purposes .The website eprognosis.org presents
a number of these calculators.

Step four : Deliver the prognostic information.

When delivering the prognostic information, clinicians
should use language that emphasizes the range of
possible outcomes. Ranges are important because of the
inherent uncertainty in any prognostic information. For
example, one might give a prognosis for life expectancy
in hours to days, days to weeks, weeks to months,
months on one hand, or months to a year at most.
Clinicians can acknowledge that dealing with uncertainty
may be difficult psychologically for patients and families,
as in:

I wish the information were more certain. I

understand that you would like more certain
information. But that certainty does not exist. How
can I help you to cope with that uncertainty?
Some patients may find it helpful to refocus on the
present, rather than dwell on the uncertainty of the
future. When time is likely to be short, helping patients
focus on personal goals can be an antidote to strong
feelings that are often generated by an awareness of
limited time.

Clinicians should be mindful that the framing of the

prognostic information may influence the decisions
patients make. For example, in the case of chemotherapy

for cancer, patients are more likely to choose treatment if

the risks are presented as likelihood of cure rather than of
death. For this information, clinicians should consider
presenting risk information in both positive and negative
frames. For example:

Out of 100 people similar to you, 35 will die within

five years and 65 will survive.
Other patients may prefer to receive prognostic
information qualitatively In the example below,
qualitative prognostic information is tied in with a
recommendation for care , illustrating how these steps
can be adapted to the clinical situation:

I worry that, because your cancer has progressed

despite all the chemotherapy we have to offer, that
time may be short for you. At this time, I suggest
we focus on getting you enrolled in hospice now so
that we can get you out of the hospital and let you
be with your family.
Step five : Respond to emotion. Attending to the
affective response to prognostic information is of critical
importance. Clinicians need to be sensitive to patient and
family distress at hearing the prognosis. This can be
accomplished by providing supportive statements and
questions. However, it is important to avoid

providing false reassurance to the patient in

response to intense distress.
Step six: Agree on a plan for the next steps. This
may be a follow-up appointment to discuss treatment
options in light of the prognostic information, additional
testing that may help clarify the prognosis, or a
supportive visit to provide additional time to process the
emotional content of the prognosis and its implications.
For many patients, structure is the antidote to despair,
and they rely on a sense of a plan for the future to help
cope with unwanted news.

SUMMARY

Prognostic information is a critical component of informed

shared decision making. The risks and benefits of any test
or treatment must be considered in light of the patients
expected prognosis. Prognosis has bearing both on
medical decisions as well as other factors important to
patients, including addressing spiritual, financial, and
interpersonal issues
Patients who have a good understanding of their
prognosis tend to make different medical decisions than
those who are not aware. A clinicians fear of discussing
prognosis because it may provoke negative feelings is not
an adequate reason for avoiding discussions of
unwelcome news. Evidence is mounting that inadequate

preparation for death leads to poor bereavement

outcomes, including depression, a sense of regret, and
complicated grief
Although prognostic information from a prognostic tool is
not perfectly accurate, clinicians own empiric estimates
of prognosis are likely to be far less accurate. The
combination of information from prognostic tools and
clinical judgment results in a better prognostic estimate
than either alone.
A majority of patients with serious illness would want
their clinician to discuss prognostic information. Such
information should be offered to patients and never
forced upon them
Discussions of prognosis should proceed in a stepwise
manner that reflects the science of how patients and
families perceive and respond to prognostic information.
Above all, prognosis discussions must proceed with an
intense sensitivity to the emotional reactions of patients
and families.

HEART FAILURE
Palliative care should be provided throughout the course
of HF care, based upon patient and family needs,
rather than upon an estimate of prognosis.

Communication with HF patients and their families about

their preferences for care and the potential life-limiting
nature of HF early in the course of illness will facilitate
later conversations when the patients disease status
worsens or they approach the end of life. The majority of
HF patients prefer honest communication about their
illness from doctors.
Meticulous management of HF and associated
syndromes, such as sleep-disordered breathing, are a
critical component of palliation of symptoms in HF
patients.
Palliative care that is multidisciplinary is indicated to
address the broad physical and psychological symptom
burden in advanced HF. Some data support specific
treatments for symptoms, although extrapolation from
chronic HF data is necessary because few data inform
care for advanced HF patients.