Palliative care

PALLIATIVE CARE
MRS. GRACE LYDIA
ASST.PROFESSOR
OACN

INTRODUCTION
Palliative care is developing as an
areas of special clinical competence
throughout the world. The modern
hospice is a relatively recent concept
that originated and gained momentum
in the United kingdom after the
founding of St. Christopher‘s hospice
in 1967. It was founded by Dame Cicely
Saunders, widely regarded as the
founder of modern hospice movement.

• Palliative medicine has been
recognized as a specialty in UK since
1987, in Australia and New Zeland
since 1988. and more recently in
Canada.

Definition of palliative care
• Palliative care is an approach that
improves the quality of life 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 impeccable assessment and treatment
of pain and other problems, physical,
psychosocial and spiritual.
-WHO 2002

• ‘to mitigate the sufferings of the patient,
not to effect a cure’(Macpherson, 2002).

• Palliative care aims to relieve
symptoms and improve the quality of
living and dying for a person and/or
family living with a life threatening
illness.

• Palliative care strives to help individuals
and their families:
· address physical, psychological,
social, spiritual and practical issues and
associated expectations, needs, hopes
and fears,
· prepare for, and manage, life
closure and the dying process, and
· cope with loss and grief during the
illness and bereavement.
5/23/2014 Free PowerPoint Template from www.brainybetty.com 7

• The National Council for Palliative Care,
which is an umbrella organisation for
setting standards in specialist palliative
care in the UK, published its current
definition in 2002 NCPC definition of
palliative care
• Palliative care:
• Affirms life and dying as a normal
process;
• Provides relief from pain and other
symptoms;

• Integrates the psychological and
spiritual aspects of patient care;
• Offers a support system to help patients
live as actively as possible until death;
• Offers a support system to help the
family cope during the patient‘s illness
and in their own environment.
• Source: National Council for Palliative
Care (2002)

Palliative care…..
• Palliative care may:
complement and enhance treatment of
the disease at anytime during the disease
trajectory, or become the total focus of
care.
Palliative care may be provided to
individuals:
· with any diagnosis
· regardless of age, and
· when they have unmet needs and
are prepared to accept care.

TERMINOLOGIES
• Autonomy – ―the state of being self-
governed‖ (CPCA, 2001).
• Thinking and acting independently without
outside influence and direction.
• Bereavement – ―the state of having
suffered the death of someone significant‖
(CPCA,2001)

• Caregiver – ―anyone who provides care.
• Care givers are people who are willing
to listen to ill persons and responds to
their individual experiences (Twycross
R 2003).
• Formal caregivers are members of an
organization and accountable to defined
norms of conduct and practice. They
may be professionals, support workers,
or volunteers.

• Informal caregivers are not members of
an organization. They [usually] do not
have formal training, and are not
accountable to norms of conduct or
practice. They may be family members
or friends‖ (CPCA, 2001).

• Dignity – To treat individuals with respect,
esteem and regard
• Family – Whomever the person says is his or
her family. The family may include relatives,
partners, friends and pets.
• Grief – Reactions (physical, emotional,
behavioral, spiritual) experienced in
anticipation of, during and after a loss.
• Needs – Issues that patients and caregivers
mutually agree require attention in the plan
of care.

NEED OF PALLIATIVE CARE
• Cancer burden: global picture.
• Number of new cancer cases (in millions)a
2000 2020
2050
• World 10.6 15.3
23.8
• Developing
countries 5.4 9.3
17.0
• Developed
countries 4.6 6.0
6.8
• Parkin, D.M., Bray, F.I., and Devesa, S.S. (2001). Cancer burden in the year
2000. The global picture. European Journal of Cancer 37, 4–66.

ESTIMATION
• One million cases of cancer occur each
year in India, with over 80% presenting at
stage III and IV. Two thirds of patients with
cancer are incurable need palliative care
and approximately one million people are
experiencing cancer pain every year.
• Acc to WHO, more than four million cancer
patients would benefit from palliative care.
Less than one percent of those who need
palliative care services have access to
such services in India.

• Size of problem. Estimated number of
• people who would need palliative care (in
millions)
• Annual deaths globally 56
• Annual deaths in developing countries 44
• Annual deaths in developed countries 12
• Estimated numbers needing palliative
carea 33
• It can be estimated that approximately
60% of the dying need

Since death also affects family members and
close companions, perhaps one to two
persons giving care and support for every
one who dies, then a conservative figure
might be 100 million people who would
benefit from the availability of basic
palliative care.

Milestones in palliative care in
India
• 1986 - First hospice care- ―Shanti Avedana
Ashram‖ – at Mumbai.
• 1990 - Cancer Relief India (CRI) a UK charity
founded - provide education to doctors and
nurses in palliative care and providing pain
and symptom relief for cancer patients.
• 1994 – Pain and palliative clinic at Calicut.
• 1994- Indian association of Palliative care
with WHO and Govt of India - aim is to
propagating palliative care in India along with
facilitating education initiatives and drug
availability.

Milestones…..
• 1993-95- CRI and Cancer Relief Macmillan Fund
with WHO facilitated training of doctors and
nurses in palliative care.
• 1997- Can support, Delhi .(first palliative care
home in north India)
• 1999- first nurse from India sponsored by CRI to
complete the diploma in palliative nursing at
Oxford Brookes University.
• 2001- Neighborhood Netwrok in Palliative care
(NNPC) has a network of 150 such clinic
supported by 10,000 trained volunteers, 85
doctors and 270 nurses looking after about
25,000 patients at any point.

Milestones…..
• 2001- Guwahati Pain and palliative care
Society.
• 2008- first palliative care policy in Kerala.
The policy emphasis the community
based approach to palliative care and
considers home based care as the corner
stone of the palliative care services.
Psycho oncology in India- integrated services
linking training, clinical services and
research activities which are linked at
several levels involving volunteers in the
community.

• The word ‗palliative‘ has its origins in the
Latin word ‗pallium‘ meaning to cloak or
cover. In the context of how cancer was
perceived and poorly diagnosed from the
middle ages until perhaps the latter half of
the 20th century, it is an appropriate
description. Even today, there are many
cancers that grow unseen and without
symptoms for a considerable time before
the person seeks help.

• The term "palliative care" is increasingly
used with regard to diseases other
than cancer such as chronic, progressive
pulmonary disorders, renal
disease, chronic heart failure, HIV/AIDS,
and progressive neurological conditions.

• Palliative care (pronounced pal-lee-uh-
tiv) is specialized medical care for
people with serious illnesses. It focuses
on providing patients with relief from
the symptoms, pain, and stress of a
serious illness—whatever the
diagnosis. The goal is to improve
quality of life for both the patient and
the family.

Philosophy of Palliative Care
• ―To give people with life limiting illnesses
a reason to hope and a feeling of greater
self-confidence and dignity.
• We embrace a holistic approach to care
giving, which respects the dignity and
worth of each person.
• We believe in creating an environment that
nurtures the physical, intellectual, social
and spiritual wellbeing of those in our
care‖.

Philosophy….
• Palliative, or comfort care,
recognizes that death is a normal
part of life and strives to prepare
patients and their families so we can
all die on our own terms.

• From the start of a serious or terminal
illness, practitioners reduce the burden
on family caregivers by identifying and
providing for the needs of you and your
family.
• These needs may be physical,
emotional, social or spiritual.

PHILOSOPHY OF PALLIATIVE
CARE
• The Canadian Palliative Care Association
(2001)
Proposed Norms of Practice for Hospice
Palliative Care:
We believe
• Access is Foundational - Palliative care
services should be available to all who
require care.

• Care is Patient-Focused – Palliative cares
strives to meet the physical,
psychological, spiritual and social needs
of patients and families.
• It is sensitive to personal, cultural and
religious values, beliefs and practices,
developmental state,and readiness to deal
with the dying process

Philosophy……
• People Have the Right To Choice - Each person is an
autonomous and unique individual with the right to
participate in informed discussion related to care
and to choose the best possible options and
outcomes based on that information.
• Dying is Part of Life – Palliative care affirms life.
Euthanasia and physician assisted suicide are not
considered options. Palliative care never
intentionally hastens death.
• Quality of Life Guides Decisions – Care choices
should be guided by quality of life as defined by the
patient.

Philosophy…….
• Team Work Is Essential – Palliative care is
a network of services most effectively
delivered by an interdisciplinary team who
rely on shared knowledge, expertise and
effective interactions.
• Service is Coordinated – A palliative care
program should promote continuity of care
across settings and coordination amongst
all involved caregivers and
programs/services.

• Accountability is Demonstrated Through
Outcomes- We are accountable to
ourselves, each other, to our individual
sites, to the regional program and to the
public we serve. Accountability is
demonstrated through measurable goals.

Philosophy…..
• Confidentiality is Central – Patient information is
treated with the utmost respect. Team members
must adhere to this principle.
• Care Setting Is Important – Palliative care is
provided in a patient and family focused
environment in the most appropriate care setting
such as the home, hospice, continuing care
centers, acute hospitals or on a tertiary palliative
care unit. The needs and preferences of the
patient and family, as well as the resources
available, are taken into consideration.

Philosophy……
• Caregiver Well-Being Is Fundamental – The
provision of ongoing support to enhance
formal and informal caregivers‛ well-being is
integral to a successful palliative care
program.
• On-going Education is Essential – Patient,
family, caregiver and public education is
important to the maintenance and
enhancement of the quality of palliative care.

• Research Leads to Advancement in Care –
The development, dissemination and
integration of research are critical to
palliative care.
• Resources Influence Program Quality –
Adequate resources, responsibly
managed, are imperative to maintain and
advance palliative care programming.
• Collaborative Leadership is
Advantageous- The development and
maintenance

SCOPE
• Palliative care is the specialized medical
care for people with serious illness.
• provides relief from pain, shortness of
breath, nausea and other distressing
symptoms;
• affirms life and regards dying as a normal
process;
• intends neither to hasten nor to postpone
death;
• integrates the psychological and spiritual
aspects of patient care;

• offers a support system to help patients
live as actively as possible;
• offers a support system to help the family
cope;
• uses a team approach to address the
needs of patients and their families;
• will enhance quality of life;
• is applicable early in the course of illness,
in conjunction with other therapies that are
intended to prolong life, such as
chemotherapy or radiation therapy.

Main aims
Avoid the avoidable
suffering
Building Capacity :
empowerment to adjust,
relief and support the
unavoidable suffering
Wellbeing
Promote
comfort
Improve the
Quality of Life
Comprehensiv
e Care
OMS 2002

AIMS AND PRINCIPLES OF
PALLIATIVE CARE
• Respect the likes and dislikes, goals choices
of the dying person .
• Integrates the psychological and spiritual
aspects of patient care.
• Offers a support system to help patients live
as actively as possible until death.
• Patient centered rather than disease focused.
• Concerned with healing rather than curing.
• Affirms life & regards dying as normal
process i.e as a part of the life cycle.

Principles….
• Builds ways to provide excellent care at the
end of the life.
through education of care providers,
appropriate health policies and adequate
funding from insurers and the governemnt.
• Provides relief from pain and other
distressing symptoms.
• Death accepting but also life enhancing.
• Intends neither to hasten nor post pone
death.

• Adds life to days and not days to life.
• Partnership between the patient and the
care providers.
• Supports the need of the family members
• Helps then in gaining access to needed
health care providers & appropriate care
settings. Involving various kinds of trained
providers in different setting tailored to the
needs of the patient and his or her family.

• Offers support system to help the family to
cope during the patients illness and in
their own bereavement, including the
needs of children.
• Uses a team approach to address the
needs of patients and their families
including bereavement, counseling, if
indicated.
• Enhance the quality of life, may also
positively influence the course of a
patients illness.

• Palliative care for children is the active total
care of the child's body, mind and spirit, and
also involves giving support to the family.
• It begins when illness is diagnosed, and
continues regardless of whether or not a
child receives treatment directed at the
disease.
• Health providers must evaluate and alleviate
a child's physical, psychological, and social
distress.

• Effective palliative care requires a broad
multidisciplinary approach that includes
the family and makes use of available
community resources; it can be
successfully implemented even if
resources are limited.
• It can be provided in tertiary care facilities,
in community health centres and even in
children's homes.

• Palliative care is provided by a team of doctors,
nurses and other specialists who work together
with a patient‘s other doctors to provide an extra
layer of support. It is appropriate at any age and
at any stage in a serious illness and can be
provided along with curative treatment.
• The core team includes doctor, nurse and social
work palliative care specialists. Massage
therapists, pharmacists, nutritionists,
chaplains and others may also be part of
the team.

Goals of palliative care
• Achievement of the best possible quality of
life for patients and their families regardless
of the stage of the disease or the need for
other therapies.
• Three essential component of palliative care:
Hope
Honesty
openness
Symptom
relief
Psychological
support
Team work and partnership

• Palliative care is still sometimes defined as
solely being for people with cancer, but
palliative care is more often now defined
as being for people facing a life-
threatening illness. Palliative care is not
usually defined as being for people with
chronic diseases such as diabetes.

PALLIATIVE CARE MODEL
• TRADITIONAL MODEL:
TREAT
MENT
PALLIAT
IVE
CARE
ADVANCED
DISEASE
DIAGN
OSIS
TIME COURSE OF
ILLNESS

Cure/Life-prolonging
Intent
Palliative/
Comfort Intent
Bereavement
D
E
A
T
H
“Active
Treatment”
Palliative
Care
D
E
A
T
H
EVOLVING MODEL OF PALLIATIVE CARE

EVOLVING MODEL OF PALLIATIVE
CARE
Cure/Life-
prolonging Intent
Palliative/
Comfort Intent
Death Bereavemen
t

Modified palliative care model

• Palliative care focuses on symptoms such
as pain, shortness of breath, fatigue,
constipation, nausea, loss of
appetite, difficulty sleeping and depression.
It also helps you gain the strength to carry
on with daily life. It improves your ability to
tolerate medical treatments. And it helps you
have more control over your care by
improving communication so that you can
better understand your choices
for treatment.

A palliative approach
• Aims:
- to improve the quality of life for
individuals with a life-limiting illness and
their families, by reducing their suffering
through early identification, assessment
and treatment of pain, physical, cultural,
psychological, social and spiritual needs

Myths about palliative care
• Residents will become addicted to pain relief
drugs.
• The palliative approach is only provided in
hospital type settings
• You need to be an expert to be able to provide
the care
• You need to be a nurse to be able to provide the
care
• Applying the palliative approach will increase
the care worker‘s work load
• The palliative approach is only provided to
residents with cancer
• The palliative approach costs more.

PC team…
• Potential members of the
interdisciplinary team for a
palliative approach may
include but not be limited
to
• Care assistants
• General Practitioners
• Generalist nurses
•Specialist nurses
• Aboriginal health workers
• Trained volunteers and their
coordinators
• Pharmacists
• Chaplains/pastoral care
workers
Recreation activity officers
• Pain specialists
• Allied health practitioners
• Specialist physicians
• Community/palliative
services
• Psychologists/psychiatrists
• Specialist palliative service
providers
• Managers.
• Home attendants
• Physical, occupational, art,
play, music therapist.
• Bereavement coordinators.

SERVICES PROVIDED BY PALLIATIVE CARE
• Interdisciplinary team care- nursing serices,
medical, social, pastoral counseling, home
health aide.
• Bereavement counseling
• Dietary counseling
• Physical therapy
• Occupational therapy
• Speech therapy
• Investigations and drugs
• Durable medical equipments and supplies.

Palliative Care Patient Support
Services
 Three categories of support:
1. Pain management is vital for comfort and
to reduce patients‘ distress. Health care
professionals and families can collaborate
to identify the sources of pain and relieve
them with drugs and other forms of therapy.

Services
2. Symptom management involves treating
symptoms other than pain such as nausea,
weakness, bowel and bladder problems,
mental confusion, fatigue, and difficulty
breathing

Services
3. Emotional and spiritual support is
important for both the patient and family in
dealing with the emotional demands of
critical illness.

ELEMENTS OF PALLIATIVE
CARE
1.PRIMARY GOAL:
The primary goal is to prevent and
relieve sufferings imposed by disease and
their treatment, achievement of best
possible quality of life for patients and
their families regardless of the stage of the
disease or need for other therapies.

Elements…
2.PATIENT POPULATION:
Patients of all ages experiencing a
debilitating chronic or life threatening illness,
condition or injury.
3.PATIENT AND FAMILY CENTERED CARE:
The uniqueness of each patient and family is
respected. The patient family constitute the unit
of care.
4.TIMING OF PALLIATIVE CARE:
It ideally begins at the time of diagnosis of a
life threatening or debilitating condition and
continues through cure, or until death and into
the family‘s bereavement period.

Elements…..
5.COMPREHENSIVE CARE:
Palliative care employs multidimensional
assessment to identify and relieve sufferings
through the prevention or alleviation of physical,
psychological, social and spiritual distress.
6.INTERDISCIPLINARY TEAM:
Team work is an integral part of the
philosophy of palliative care. Require the
expertise of various providers in order to
adequately assess and treat the complex needs
of seriously ill patients and their families.

Elements….
7. COMMUNICATION SKILLS:
Effective communication skills are
requisite in palliative care. These includes
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.

Elements….
8. SKILL IN CARE OF THE DYING AND
BEREAVED:
Team must be knowledgeable and skilled in
providing care for the dying and the bereaved.
9.CONTINUITY OF CARE ACROSS SETTINGS:
Palliative care is integral to all health care
delivery system settings (hospital, emergency
dept, nursing homes, home care, assisted living
facilities, outpatient and non traditional
environments such as schools. The palliative
care team collaborates with professional and
informal care givers in each of these settings.

Elements….
10. EQUITABLE ACCESS:
Palliative care teams should work toward
equitable access to palliative care across all
ages and patient populations, all diagnostic
categories, all health care settings including
rural communities, and regardless of race,
ethnicity, sexual preferences or ability to pay.
11. QUALITY IMPROVEMENT:
Palliative care services are committed to the
pursuit of excellence and high quality of care
which enhances the quality of life.

Benefits of PC
• palliative approach offers many benefits to the
residents, their families and the health care team.
• Some of these are:
• reducing potential distress to residents and their
families caused by a transfer to an acute care
setting
• reducing the admission and/or transfer of
residents to acute care facilities as care staff
develop the skills to manage the palliative care
residents
• increasing the involvement of the resident and
their family in the decision making about their
care

• encouraging open and early discussion
on death and dying
• allowing for advance care planning
• providing opportunities, especially for
improved control of pain symptoms, in a
setting that is familiar to the resident
• offering the resident and family consistent
and continuous care

Approaches to Palliative Care
• Not a ―one size fits all approach‖
• Care is tailored to help the specific needs
of the patient
• Since palliative care is utilized to help with
various diseases, the care provided must
fit the symptoms.
Image courtesy of uwhealth.org

What does Palliative Care Provide
to the Patient?
• Helps patients gain the strength and
peace of mind to carry on with daily life
• Aid the ability to tolerate medical
treatments
• Helps patients to better understand their
choices for care

PALLIATIVE CARE NURSING
SPRITUA
L
PHYSICA
L
EMOTIO
NALAL
SOCIALL

PALLIATIVE CARE NURSING
• Reflects whole aspects care. It combines the
humanistic approach with a scientific approach.
• Physical wellbeing: Free of pain and discomfort,
functional ability etc.,
• Psychological well being: free from
anxiety/fears, ability to experience happiness
etc.,
• Social well being: Purposeful life role, free from
financial burden.
• Spiritual well being: feelings of hope, meaning to
life.

Physical needs
• Palliative care professionals provide highly
skilled management of pain and other
symptoms such as anxiety, constipation,
nausea, breathing difficulties and confusion.
• They also help patients and families cope
with common changes such as loss of
appetite, weakness, bowel and bladder
problems, as well as side effects of
therapies.

• Most pain and other symptoms can be
managed at home or in hospice. Some
treatments may require diagnostic tests
that must be done in a hospital.
• A small percentage of patients will need to
be admitted to a tertiary palliative care
unit for severe and complex symptoms.

Emotional and spiritual needs
• The health of the whole person is important
in hospice palliative care. Hospice palliative
care recognizes emotional and spiritual
distress as important sources of suffering
requiring support in addition to physical
symptoms.
• Care teams offer help with non-physical pain
through counseling and spiritual support to
manage the emotional, social and spiritual
impact

• We also offer a variety of bereavement and
counseling services to friends and family
members before and after a patient‘s
death.

PALLIATIVE CARE
COMPETENCIES / SKILLS
• Communication skills
• Physical skills
• Psychosocial skills
• Teamwork skills
• Intrapersonal skills
• Life closure skills

COMMUNICATION SKILLS
The ability
• To field and respond to sometimes profound
or rhetorical questions about life and death
• To know when to say nothing, because that is
the most appropriate response;
• To use therapeutic comforting touch with
confidence;
• To challenge colleagues who may wish to
deny patients information; and, perhaps
• To discuss the imminent death of a relative
with families

TEAM WORK SKILLS
• The growth of the
nursing role within
these teams has
been dramatic and
continues to
represent a much
admired model of
working .

PHYSICAL CARE SKILLS
• The knowledge and skills necessary to
deliver active, hands-on care in whatever
setting throughout a long period of illness.
• Observational skills and the intuitive ability
to recognise signs
• Advising doctors of the appropriate
prescription and dosage to manage pain
• The advocacy role nurses have towards
patients at a time of extreme vulnerability.

PSYCHOSOCIAL SKILLS
An ability
• work with families,
• Anticipating their needs,
• Putting them in touch with services and
• Supporting them when appropriate

INTRAPERSONAL SKILLS
Nurses need to recognise and attempt
to understand personal reactions that
occur as a natural consequence of working
with dying and bereaved people and to be
able to reflect on how this affects care
given in sensitive situations.
It is the most challenging of all
competency areas and plays a significant
part in the professional growth of those
who choose to work in this field.

LIFE CLOSURE SKILLS
• This area is concerned with nursing
behaviours and skills that are crucial to
patients‘ and families; dignity, as they
perceive it, when life is close to an end and
thereafter.
• Such care has been described as a sacred
work, in which the nurse enters into the
patient‘s intimate space and touches parts
of the body that are usually private

Skills need palliative care
nurse
• A committed person:
A Nurse stays with the patient or visits the
patients many times during the course of
the patients illness. She may have to stay
with her patient for a long time if it makes
the patient as ease. She may have to
become a person oriented nurse in order
to give holistic care.

A good listener
• Verbal expressions are always heard. Body
language tells many things. Activities like
sitting alone in an area of significance or
using articles of a particular person who
passed away tells us that area or the use
of that specific article gives him comfort
and he is preparing himself for leaving this
world.
• Nurse allow them to ventilate their anxiety
for coping with the present situation.

A good communicator
• A nurse needs to be honest with the patient
about the disease. She needs to answer in
simple ways so that the patient and the
relatives can understand.
• Your patient may need an extra minute or a
comforting word from you which makes a
difference. She needs to use right word, in
right tome and pitch with the right attitude for
reaching out to the patient effectively.
• Acute care nurse plays a pivotal role in
clinician - significant others, communication
in the acute are settings.

Empathetic to the emotions (of
patients and relatives)
• Patient and relatives may shout and
scream at you. They may blame God for
pain and all difficulties. Palliative care is
seen as the end of the road of care.
Reacting to their anticipated grief and
crisis and helping them appropriately
makes to be at ease.
• Families and the patient needs to know the
truth as they may need to reorganize and
adopt their lives towards the attainment of
more achievable goals, realistic hopes and
aspirations. (Fallowfield L J et al 2002).

Conti…
• Nurses role was a supportive one with
multiple dimensions. Model of the
supportive role in palliative care was
developed , comprised of six intervoven
dimensions. Valuing, connecting,
empowering, doing for, finding meaning
and preserving own integrity.

Able to understand the pain
• ‗Pain is what the patient says hurts‘ (Twycross R
2003). The intensity of pain increases or
decreases according to the mood of the patient. It
could be acute or chronic. Causes of pain can be
due to chemotherapy, constipation, radiation
therapy, physical or psychological problems. Pain
management in patient includes modifications of
the pathological process by giving radiation
therapy, chemotherapy or surgery.
• Along with opioids and non opioids are also
used. Adjuvant includes corticosteroids,
antidepressants, antiepileptic us, muscle
relaxants antispasmodics and biphos phonates .

Pain….
• Nurse teach the patient about non drug
methods include
• -massage, application of heat pads,
acupuncture, relaxation therapy,
behavioural therapy can be used to reduce
the pain.

Able to recognize associated
neuropsychiatry conditions
• Cancer related fatigue, and sleep
disturbances must be considered as a clinical
syndrome.(Barton Buake 2006).
• Cancer patient with advance disease may
prone to delirium, depression, suicidal
ideation, and severe anxiety. People who
receives systematic cancer treatment were
some what impaired in executive function,
verbal memory and motor functioning (Nail
2006).one third of cancer population
experiences some variety of distress , only
about 10% receives any psychosocial therapy
(Vanchon M 2006).

Role of nurse in palliative care
• CARING FOR THE PATIENT:
1. Direct nursing care
2. Meeting physical needs & symptoms management.
3. Providing psychological reassurances
4. Monitoring & administering pain relief intervention, both
pharmacological and non pharmacological.
5. Preventing complications – preventing, monitoring & relieving
discomfort relaxation & contentment & preventing
complication.
6. Educating family in basic nursing care.
7. Facilitating participation of significant others in patient care.
8. Specialized nursing care related to
-Lymph edema management
- wound care
- stoma care
- bowel and bladder care.

PALLIATIVE CARE PLAN
Palliative care plan includes
-care goals
-symptom management
-advance care planning
-financial planning
-family support
-spiritual care
-functional status support and
rehabilitation
-co morbid disease management

Role of nurse in palliative care
1. USE THERAPEUTIC COMMINICATION:
- Establish caring and trusting
relationship
- Assess the stage, types of the grief, and
its signs and symptoms.
-provide reassurance and respect
- invite the clients to reveal the emotions
& consensus of greatest importance to them.
-Avoid communication barrier.

2.PROVIDE PSYCHOSOCIAL CARE:
They may have anxiety, depression, altered
body image, powerlessness, uncertainty and
isolation.
Provide information that help the client to
understand their disease, the benefits and
burden of treatment options, and their values
and goals to preserve the autonomy of client
.

3. Manage the symptoms
• Managing the multiple symptoms commonly
experienced by the chronically ill or dying
clients remains a primary goal of palliative
care nursing.
• Ongoing clinical assessment, reassessing
pain and medication side effects, developing
pain management expertise and advocating
for change if the client does not get relief
from the prescribed regimen.

4. Able to understand the personal
need of the patient
• Personal hygiene and protection from
infections are two major needs of cancer
patients.
• Prevention of pressure sore
• Nutritional need – consider the taste and
desire to have specific food in
consideration.
• Catheter care
• Turning patient position freuquently.

5.MAINTAIN A COFORTABLE AND
PEACE FULL ENVIRONMENT
• It helps to relax, promote good sleep
patterns and minimize symptoms severity.
6.PROMOTE SPIRITUAL COMFORT AND
HOPE:
-helps the client to make connections to
their spiritual practice or cultural community.
- collaborates with the client own spiritual
leaders and community.
- demonstrate patience.

7.Protect against abandonment and isolation
- answer promptly, if they have doubts.
-involving the family members in clients care.
8. Support the grieving family:
- provide education and information
- inform family members are able to get
way to rest and relax.
- provide psychological support

9. Assist with end of life decision making
10. Facilitate Mourning
- help them to accept the loss
- support efforts to adjust to the loss
- encourage establishment of new
relationship
- Allow to grieve
- Interpret normal behavior
- Provide continuous support
- Be alert for ineffective coping.

FACILITATOR
CASEMANAGER
ADVOCATE
ASSESSMENT
AND
MANAGEMENT
EXPERT
P
A
L
L
I
A
T
I
V
E
N
U
R
S
E
S
R
O
L
E

Palliative care nursing
Doing for
Preserving
integrity
empowering
Finding
meaning
VALUING
connecting

Connecting
• Making a connection
– establishing a rapport
– building up trust
• Maintaining a connection
– being available, spending time, sharing secrets, sharing
self, maintaining trust.
• Breaking the connection
– usually as a result of the patient‘s death

Empowering.....
• facilitating –
– recognises patient autonomy
• encouraging
• defusing
– dealing with negative feelings
• mending
– - facilitating healing
• giving information

Doing for......
• Taking charge
– symptom control
– making
arrangements
• Team playing
– acting as the
patient‘s advocate
Finding meaning
• Focusing on living -
helping the patient to
live as fully as
possible
• Acknowledging death
– giving or reiterating
bad news
– talking about death
and the time left

Preserving Integrity
• Confronting own
mortality
• Burnout
• Supporting
Colleagues

Hope
Comfort
Attachment
Worth
Physical distress Physical Ease
Abandonment
& Isolation
Caring relationships
Feeling devalued Feeling valued

Hope nurturing interventions in
palliative care
• Comfort
Assessment, psychosocial issues.
• Attachment
Be there, caring environment, promote
communication
• Worth
Explore previous experience, future
wishes,enhance independence

The tyrannies of palliative care
(Aranda, 2001)
• Niceness
• Glowing
testimonial
• Depressing/Sad
• Passive

Care of the family
• Including patient & significant others in
decision making r/t patient care.
• Attending to their grief, worries, preparing
them for the loss
• Communicating with family facilitates to
1.Improve planning & coping.
2.Encourage realistic goals & autonomy.
3.Reduce uncertainty.
4.Maintain trust.

BARRIERS IN AVAILING PALLIATIVE
CARE
• Inadequate training of health care personnel
in symptom management & other End of life
skills.
• Inadequate standards of care
• Lack of accountability in the care of dying
patients.
• Lack of appropriate information & resources
• Lack of investment in research pertaining to
palliative & end of life care.

Barriers….
• There are over 135 hospice and palliative
care services in 16 states in India,
concentrated in large cities.
• There are 19 states or Union territories in
which no palliative care provision was
identified.
• Barriers to the development of palliative care
include – poverty, population density,
geographic distances, opioid availability,
work force development and limited national
palliative care policy.

Palliative care developments
around
the world
• The estimated number of persons needing
palliative care is just over 33 million.
• Death also affects family members and
with one to two persons shouldering the
heavy daily routine of care, this gives a
conservative
figure of 100 million people who would
benefit by the availability of basic palliative
care.

• The rise of hospice and palliative care in
its distinctly modern guise (combining
clinical care, education, and research) is
generally traced to the late 1950s and early
1960s.

• A 1999 listing of palliative care organizations
with a global perspective(43) also includes:
• British Aid for Hospices Abroad;
• the Hospice Education Institute;
• and the WHO Collaborating Centre for
Palliative Cancer Care, Oxford.
• Other groups include WHO experts and
international collaborators and WHO
collaborating centres in Milan, Saitama, and
Wisconsin.

• It is estimated that hospice or palliative
care services now exist, or are under
development,
on every continent of the world, in around
100 countries. The total number of hospice
or palliative care initiatives is in excess of
8000 and these include inpatient units,
hospital-based services, community-based
teams,
day care centres, and other modes of
delivery.

International associations and initiatives in
support of
hospice-palliative care
• 1973 - International Association for the Study of Pain,
founded
Issaquah, Washington, USA
• 1976 - First International Congress on the Care of the
Terminally Ill,
Montreal, Canada
• 1980 - International Hospice Institute, became
International
Hospice Institute and College (1995) and
International
Association for Hospice and Palliative Care
(1999)
• 1982 - World Health Organization Cancer Pain and
Palliative Care

International associations and initiatives in support of
hospice-palliative care
• 1990 - Hospice Information Service, founded at
St Christopher‘s Hospice, London, UK
• 1998 - Poznan Declaration leads to the
foundation of the Eastern and Central European
Palliative Task Force (1999)
• 1999 - Foundation for Hospices in Sub-Saharan
Africa founded in USA
• 2000 - Latin American Association of Palliative
Care founded
• 2001 - Asia Pacific Hospice Palliative Care
Network founded
• 2002 - UK Forum for Hospice and Palliative Care
Worldwide founded by Help the Hospices

Asia Pacific region
• Protocols for the introduction of the WHO
three-step analgesic ladder were first
introduced in China in 1991, leading to
increased opioid use and greater interest
in pain and palliative care.
• In Japan, cancer is the principal cause of
death, accounting for about 295 000
deaths in 2000.

• The country‘s first service for dying people
was
organized in the Yodogwa Christian Hospital
in 1973;
• In 1979, the Japanese Association for Clinical
Research on Death and Dying was
established;
• in 1981, the first hospice ward inside a
hospital was created;
• by 1993, the Ministry of Health and Welfare
had recognized palliative care units in 11
hospitals, with 231 beds in total

Palliative care services in the 14 sectors of the Asia
Pacific Hospice Palliative Care Networka
Sector Organizations
providing
hospice/palliative
care (millions)
Population
(million)
Estimated
annual
cancer
deaths
Estimated
coverage by
palliative
care
services
India 49 1000 ------ ---------
Japan 102 127 295 482 5
Malays
ia
30 22 78 25 24
New
zeland
42 4 7461 83
Singap
ore
10 4 4237 66
Taiwan 28 22 32000 5

• India, with one billion inhabitants, contains
one-sixth of the world‘s population and is
a country of striking ethnic, cultural, and
religious diversity.
• Around one million new cases of cancer
occur each year; and the vast majority are
incurable at diagnosis.

• An Indian Association of Palliative Care was
formed in 1994 with the support of WHO and by 2000
there were nearly 100 palliative care initiatives
across the country.
• A detailed analysis of opioid availability problems in
India shows that approximately one million people
experience cancer pain in India every year. There
was no official source of morphine in India in the
1980s, only ‗pump-priming‘ supplies for specific
centres and projects, so levels of morphine
consumption for pain relief were low.
• By 1997, they reached a low of just 18 kg and per
capita consumption ranked 113th among 131
countries around the world.

• There is evidence that governments at many
levels (national, provincial,federal, and state)
have begun to recognize the importance of
pain relief and palliative care through the
development of officially formulated policies.
• Palliative care has also been incorporated into
several cancer control and some HIV/AIDS
programmes.
• Some of these policies have had real impact,
others have been ‗paper tigers‘ with little
effect. Often, failure results from the lack of a
comprehensive strategy, for example,
omitting the community system.

Example of a suggested essential drug list for
palliative care
Analgesics
Non-opioids (mild pain)
Acetylsalicylic acid
Paracetamol
Ibuprofen
Opioids (mild to
moderate pain) Codeine
Opioids (moderate to
severe pain) Morphine
Methadone
Opioid antagonist
Naloxone
Corticosteroids
Dexametasone
Prednisone
Laxatives
Senna
Sodium ducosate
Mineral oil
Lactulose
Magnesium hydroxide
Appetite
Prednisole
Bowel obstruction
(when surgery not
indicated)
Dimenhydrinate
Haloperidol
Hyoscine butylbromide
Metoclopramide
Anxiety, depression,
insomnia, psychosis,
Amitryptiline
epileptic seizures
Diazepam
Lorazepam
Chlorpromazine
Haloperidol
Phenytoin
Sodium valproate
Diarrhoea
Codeine phosphate
Loperamid

Gastric protection
Omeprazol
Fluid retention
Furosemide
Spironolactone
Oral candidiasis
Cotrimoxazole
Ketoconazole
Nystatin
Nausea and vomiting
Dimenhydrinate
Holoperidol
Metoclopramide
Prednisolone
Prochlorperazine

WHO has produced guidelines for their
handling
Any essential drug list for palliative care will
include opioid drugs
• Legal issues: doctors, nurses, and pharmacists should be
empowered legally to prescribe, dispense, and administer opioids
to patients in accordance with their needs.
• Accountability: opioids must be dispensed for medical use only,
with responsibility in law.
• Prescription: a prescription for opioids should contain at least the
following
information:
patient‘s name,
date of prescription,
drug name, dosage, strength and form, quantity prescribed,
instructions for use,
the doctor‘s name and business address,
the doctor‘s signature.
• Accessibility: opioids should be available in locations that will be
accessible
to as many patients as possible.

QUALITY OF LIFE:
It is the state of well being that is composite
of two components.
1.The ability to perform every day activities that
reflect physical, psychological and social well
being and
2.Patient satisfaction with level of functioning and
control of the disease. It includes like well being,
satisfaction, happiness and physical
functioning.
Eg. Karnofsky performance status scale is used to
assess the functional performance of cancer
patients.
ECOG-PS (Eastern co-operative oncology group
performance status)

HOSPICE CARE
• Hospice refers to a philosophy of care that
seeks to support dignified dying or a good
death experience for those with terminal
illness. It involves a core inter disciplinary
team of professionals and volunteers who
provide medical, psychological and
spiritual support for the patients and
family.

HISTORICAL PERSPECTIVES OF HOSPICE CARE
• The term first developed from the word
hospitality by a physician Dame Cicely
Saunders in the year 1960 for dying patients,
who is the founder of the First modern
hospice St.Christopher‘s in a residential
suburb of London.
• 1969 – Psychiatrist Elizabeth Kubler Ross
explained about 5 stages of death in his book
―on death and dying‖ which emphasis the
need of death and dying.

• Hospice care is a type of palliative care for
people who are in their final weeks or
months of life.
• Palliative care is for a person of any age,
whether or not his or her illness is
terminal. Today, palliative care can help
anyone who has a serious illness.
Palliative care could help you manage
symptoms or side effects of treatment so
that you will feel better.
HOW IS PALLIATIVE CARE IS
DIFFERENT FROM HOSPICE CARE?

CRITERIA PALLIATIVE CARE HOSPICE CARE
Who can receive the
care?
Any one with a serious
illness, regardless of life
expectancy, can receive
palliative care.
Someone with an illness
with a life expectancy
measured in months or
days
not years
Need of care You may receive
palliative care and
curative care at the
same time
Treatments and
medicines aimed at
relieving symptoms are
provided
by hospice
What organization
provides these
services?
• Hospitals
• Hospices
• Nursing Facilities
• Health Care Clinics
-Hospice organization
- Hospital
• Other health care
organizations

CRITERIA PALLIATIVE CARE HOSPICE CARE
Where are services
provided?
• Home
• Assisted living facility
• Nursing facility
• Hospital
• Usually, wherever the
patient resides, in their
home, assisted living
facility, nursing facility, or
hospital
• Some hospices have
facilities where people can
live, like a hospice
residence, or receive care
for short-term reasons,
such as acute pain or
symptom management
Who provides these
services?
It varies. However
usually there is a team
including doctors,
nurses, social workers
and chaplains, similar
to the hospice team.
A team—doctor, nurse,
social worker,
chaplain, volunteer,
home health aide and
others

Palliative care

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