Evolution, and History

• Concept of palliative care

• Significance

• Components

• Differences between

conventional and palliative

care - approaches

• Ethical aspects

• Need for palliative care

Introduction
Nurses are often considered the heart of healthcare because they play a
vital role in providing
compassionate and competent care to patients. They are the frontline
healthcare professionals who
spend the most time with patients and their families, providing support,
education, and advocacy.
Nurses provide care to patients in all contexts and stages of their lives.
Their contributions are crucial
in meeting the needs of palliative care patients and their families.
Let us start with Virginia Henderson's definition of Nursing (1966) - "The
unique function
of the nurse is to assist the individual, sick or well, in the performance of
those activities contributing
to health or its recovery (or peaceful death) that he/she would perform
unaided if he/she had the
necessary strength, will or knowledge". The nurse provides much of the
care and support to patients
and families throughout a disease trajectory and is more likely to be
present at the time of death than
any other health professionals. It is a combination of clinical competence
and effective
communication with fidelity to the patient, the ability to listen and remain
present in the face of
much suffering and distress.
Despite medical technology and biomedical engineering advances,
patients and families with
health-related problems suffer needlessly. Palliative care(PC) is an
effective model for relieving pain
and other symptoms and ensuring the quality of care. Palliative care can
be provided from the time
of diagnosis and can be given simultaneously with curative treatment.
While caring for patients with
various diseases, nurses may come across patients needing palliative care
and support. Through the
units of this module, we shall look at the approach and gain knowledge,
skills and a favorable attitude
towards providing compassionate and quality palliative care.
Evolution and History of Palliative Care
The word "Palliate" is derived from the Latin word 'pallium' meaning cloak,
i.e., an allencompassing
care which "cloaks" or protects the patients from the harshness of the
distressful
symptoms of the disease, especially when cure is not
possible.
Care of the sick has been a constant concern of
human society throughout history. We have ancient
traditions in India for special care and attention for those
who are very old, ailing or dying. The eighteen institutions
built in India by King Asoka (273 – 232 BC) had
characteristics very similar to modern hospices.
Although the hospice movement claims its origins in the
11th Century through the work of the Sovereign Order of
St. John of Jerusalem during the Crusades, the modern
hospice movement has its roots in the nineteenth Century.
Dame Cicely Saunders, a triple-qualified
professional as a nurse, social worker and then doctor, Fig.1.1: DAME
CICELY SAUNDERS
11
founded the first modern hospice - St. Christopher's Hospice, in 1967, in
South London. It quickly
became a source of inspiration to others. A new view of caring for the
dying began to emerge, which
helped to refine

ideas about the dying process and to explore the extent to which the
patients need
to know about their terminal condition. Saunders recognised that nurses
were central to caring for
people at the end of life because of their constant presence and skill in
assisting patients in finding
opportunities in suffering and peace. Her work provided the foundation for
modern hospice care.
Concept of Palliative Care
Palliative Care
The World Health Organization defines Palliative care as - "an approach
that improves the
quality of life of patients and their families facing the problems
associated with life-limiting
illnesses by the prevention and relief of suffering through
identification and impeccable
assessment and treatment of pain and other problems- physical,
psycho-social and spiritual."
Palliative care is thus the total, active care of patients suffering from life-
limiting illnesses
along with the care of their families." It relieves suffering and improves
the quality of both life and
death. Palliative care is all about looking after people with
illnesses that cannot be cured,
relieving their suffering and supporting them through difficult
times.
Key Concepts in the WHO Palliative Care Approach
• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten nor postpone death;
• 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
bereavement;
• uses a team approach to address the needs of patients and their
families, including
bereavement counselling, if indicated;
• will enhance the quality of life and may also positively influence the
course of illness;
• applicable early in the course of illness, in conjunction with other
therapies intended to
prolong life, such as chemotherapy or radiation therapy, and includes
those investigations
needed to understand better and manage distressing clinical
complications.
WHO definition of Palliative care for children
Palliative care for children represents a special, albeit closely related, field
to adult palliative care.
The WHO’s definition of palliative care appropriate for children and their
families is as follows (the
principles apply to other pediatric chronic disorders too):
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 the 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 multi-disciplinary approach,
which includes the
family and makes use of available community resources; it can be
successfully implemented
12
even if resources are limited.
• It can be provided in tertiary care facilities, community health centers
and even in
children’s homes.
Scope of Care
Palliative care aims to improve a person's quality of life when faced with a
severe or lifethreatening
illness. It can begin during an illness, last days or even years, and be
provided with
curative treatments.
Palliative care is not restricted to people receiving end-of-life care. It can
be offered to
anyone whose illness is reducing their quality of life, impacting their
ability to function normally, or
placing an undue burden on family or caregivers.
ideas about the dying process and to explore the extent to which the
patients need
to know about their terminal condition. Saunders recognised that nurses
were central to caring for
people at the end of life because of their constant presence and skill in
assisting patients in finding
opportunities in suffering and peace. Her work provided the foundation for
modern hospice care.
Concept of Palliative Care
Palliative Care
The World Health Organization defines Palliative care as - "an approach
that improves the
quality of life of patients and their families facing the problems
associated with life-limiting
illnesses by the prevention and relief of suffering through
identification and impeccable
assessment and treatment of pain and other problems- physical,
psycho-social and spiritual."
Palliative care is thus the total, active care of patients suffering from life-
limiting illnesses
along with the care of their families." It relieves suffering and improves
the quality of both life and
death. Palliative care is all about looking after people with
illnesses that cannot be cured,
relieving their suffering and supporting them through difficult
times.
Key Concepts in the WHO Palliative Care Approach
• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten nor postpone death;
• 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
bereavement;
• uses a team approach to address the needs of patients and their
families, including
bereavement counselling, if indicated;
• will enhance the quality of life and may also positively influence the
course of illness;
• applicable early in the course of illness, in conjunction with other
therapies intended to
prolong life, such as chemotherapy or radiation therapy, and includes
those investigations
needed to understand better and manage distressing clinical
complications.
WHO definition of Palliative care for children
Palliative care for children represents a special, albeit closely related, field
to adult palliative care.
The WHO’s definition of palliative care appropriate for children and their
families is as follows (the
principles apply to other pediatric chronic disorders too):
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 the 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 multi-disciplinary approach,
which includes the
family and makes use of available community resources; it can be
successfully implemented
12
even if resources are limited.
• It can be provided in tertiary care facilities, community health centers
and even in
children’s homes.
Scope of Care
Palliative care aims to improve a person's quality of life when faced with a
severe or lifethreatening
illness. It can begin during an illness, last days or even years, and be
provided with
curative treatments.
Palliative care is not restricted to people receiving end-of-life care. It can
be offered to
anyone whose illness is reducing their quality of life, impacting their
ability to function normally, or
placing an undue burden on family or caregivers.

The scope of palliative care may involve:

• Reduce or stop the pain, suffering, and other physical symptoms caused
by disease and its
treatment
• Coordinating care between medical and non-medical providers
• Minimizing side effects from treatments
• Addressing the emotional, spiritual, and social needs of the individual
• Finding and supporting the needs of the family or caregivers
• Cure the condition whenever it is possible
• Help to regain and sustain health
• Early identification and prevention of diseases and complications
• Addressing a person's spiritual needs or concerns
• Addressing a person's practical needs, such as transportation and
financial concerns

Standard Terms Used in Palliative Care

Life-limiting illnesses: This term describes illnesses where all activities
that make a person feel
alive get restricted, e.g., paraplegia. The term may also be used for
diseases where death is expected
as a direct consequence, e.g., advanced cancer.
Hospice and Hospice Care: Hospice care is used when a disease, such
as advanced cancer, gets to
the point where treatment can no longer cure or control it. Hospice care
should generally be used
when a person is expected to live about six months or less if the illness
runs its usual course. People
with advanced cancer should discuss with their family members and the
doctor to decide when
hospice care should begin.
Supportive care: It is all that helps the patient to maximize the benefits
of treatment and to live as
best as possible with the effects of the disease. This may be nutritional
advice, physical therapy,
antibiotics, symptom control, transfusions, or counselling. It helps the
patients and their families
through pre-diagnosis, diagnosis, treatment, cure, death, and
bereavement.
Quality of life: WHO defines Quality of Life as "an individual's perception
of their position in life
in the context of the culture and value systems in which they live and with
their goals, expectations,
standards, and concerns. It is a broad-ranging concept affected complexly
by the person's physical
health, psychological state, personal beliefs, social relationships, and their
relationship to their
environment."
Terminal Care: Palliative care is often misinterpreted as terminal care.
However, it refers to the
management of patients during their last few days or weeks of life when it
becomes clear that the
patient is in a progressive state of decline. Another term used is end of life
care. Thus, terminal care
is a part of the spectrum of palliative care.
Continuum of care: It is a concept involving an integrated system of
care that guides and supports
a patient with chronic illnesses through a comprehensive array of health
services. This includes
outpatient care (assessment, evaluation, management), patient family
education, linking with
community-based care facilities (GPs, home-based care programs, link
centers) and acute episodic
needs and care during advanced stages of the disease (in-patient
services).
Caregivers: Refers to the relative or friend who cares for the patient or a
paid caregiver appointed
to take care of the patient.
Multi-disciplinary care: Multi-disciplinary care occurs when
professionals from various
disciplines with different and complementary skills, knowledge, and
experience work together to
deliver the most appropriate health care. Here, physiotherapists, social
workers, psychologists,
nutritionists, etc., have significant roles, along with doctors and nurses.
This approach aims at the
best possible outcome based on a patient's and family's physical and
psycho-social needs. As the needs of the patients change with time, the
team's composition may also need requirements to meet.
Nurses are the mainstay professional in the palliative care team, providing
frontline care.
Suffering: It is the distress associated with events that threaten the well-
being or wholeness of the
person.
Serious Health-Related Suffering (SHS): Suffering is health-related
when associated with illness
or injury of any kind when it cannot be relieved without professional
intervention and when it
compromises physical, social, spiritual, and emotional functioning.
Spiritual pain: Spirituality is that unique dimension in human beings that
gives a purpose to their
life. It includes searching and finding meaning in life and death, the
reason for suffering, and the
need for love, acceptance, and forgiveness—faith in God, prayers,
religious belief, and their
relevance, maybe a path some choose. A person may be spiritual without
being religious. Spiritual
pain is when these dimensions get disturbed or questioned, leading to
suffering. For example, I was
kind and fair and did not drink or smoke. Why did this happen to me?"
Psycho-social pain: It includes anxiety, fear, apprehension, depression,
loss of dignity, loneliness,
a sense of being a burden on others, and no longer being valued as a
person.
Dying with dignity: Refers to the humanitarian concept that a terminally
ill patient should have
peaceful, natural, and comfortable death rather than being subjected to
aggressive, isolating,
distressful, costly, and invasive intervention. An example of an undignified
death would be a patient
with multisystem failure being kept "alive" with long-term mechanical
ventilation and regular
dialysis in an ICU against his wish.
Bereavement support: When a person dies, we say that their family is
bereaved. This means they
are grieving and have lost someone dear and close to them. The support
given to the family to go
through this period and return to regular productive life is called
bereavement support.
Dimensions of Palliative Care
Before learning the dimensions of palliative care, let's revise the
dimensions of health. The
World Health Organization defines health as "a complete physical, mental
and social well- being
and not merely the absence of disease or infirmity. Health has physical,
emotional, social, and
spiritual dimensions.
As we discussed earlier, palliative care primarily aims to provide comfort
and has a holistic
approach, integrating four domains of care: physical,
psychological/emotional, social, and spiritual.
The domains are intertwined and have an essential impact on each other.
Thus, palliative care follows
holistic principles, and each person will have a holistic assessment of
needs.
DIMENSIONS OF PALLIATIVE CARE (A)
Physical Dimension: The most common physical problems seen among
patients are pain, nausea,
vomiting, constipation, breathlessness, delirium, nutrition and hydration
issues, fatigue, and oral
health problems. Common physical issues and their management will be
explained in the upcoming
chapters.
Psychological Dimension: People with progressive, incurable illness
may have a depressed mood,
fear of metastasis, the unpredictability of the future, anger (Why me?),
fear (What will happen to
me?), loss (I have lost everything that gave my life value), guilt/blame (I
should have gone earlier
to the doctor/I did not have the money to see a proper doctor), shame
(How will people now treat
my family and me?), confusion about what has happened, the future and
choices available, family
issues, caregiver burnout, grief/despair, loss of hope, fear of separation
from loved ones. Moreover,
isolation, solitude, helplessness, and despair build up pessimistic feelings
in the patient. They also
may develop self-hate, low morale and feeling down.
As a nurse, we should explore these concerns. For example, a patient may
experience fear, and you
need to assess the reasons for his/her apprehension.
The patients may have:
• Fear of isolation
• Fear of loneliness
• Fear of being a burden / helplessness
• Fear of pain or other symptoms
• Fear of leaving unfinished tasks
• Fear of dying
Physical Psychological
Dimension Dimension
Care
Social Spiritual
16
Social Dimension: Serious illness can have several social and economic
consequences. Some of
these are related to the inability to perform social roles. The most
common issues are:
• loss (or fear of loss) of job, social position, family role
• feels isolated (actual or perceived)
• feels a burden on family and carers
• Unfinished business: personal, interpersonal
• financial hardship due to higher medical expenses because of prolonged
stay in the hospital
and staying far from the hospital costs too much for transportation to and
fro, having to pay
for someone else to look after the children etc.
• Fears for family, including lack of insurance, financial, legal, housing, or
job-related issues.
Spiritual Dimension: When people become sick and approach the end
of their life's journey, there
is often a great deal of spiritual suffering. Each person needs to come to
terms with their losses in
their way. Also, spiritual issues like - "Why has God done this to me? What
have I done to deserve
this? / Why is God punishing me?" may worry them. Sometimes patients
will have-religious issues,
bargaining with God, remorse, guilt, unfulfilled expectations, and
meaninglessness - a sense of life
and suffering has no meaning and regrets with faith can also be a
concern. It is essential to understand
that spiritual issues are related to the "meaning and purpose of life", and
people may or may not use
religious vocabulary to express such needs. Hence spirituality does not
necessarily mean religion or
faith. It could be that the person needs time to think about their life, have
close family with them or
for comfort, or have their favorite music playing quietly in their room.
Concerns may include who
can touch the body, confessional deathbed prayers, funerary practices,
and burial clothing. Contact
with someone from their faith should be allowed and encouraged if this is
essential to their personal
life and wishes.
Total Pain
Pain is traditionally perceived as "TOTAL PAIN" with Physical, Social,
Psychological and
Spiritual dimensions. The term "Total Pain", coined by Dame Cicely
Saunders, is used when psychosocial,
physical, and spiritual distress combines to affect the patient. All the
components should be
addressed and treated to relieve 'pain completely'. Relief from total pain
improves the quality of life
of the diseased and the family. The considerable need for ongoing care for
those with long-term,
progressive, or incurable diseases needs to be met within the healthcare
delivery system. Thus,
exploring a patient's anxiety and frequent misconceptions about these
factors can be very beneficial.
The pain will not be adequately controlled unless patients feel a degree of
control over their
situation. Ignoring such psychological aspects of care may often be the
reason for persisting pain.
Thus, a holistic approach to treatment is essential in palliative care.
Significance of Palliative Care
Palliative care is essential because it gives patients options for pain and
symptom management
and higher quality of life while pursuing curative measures. When a
patient is seriously ill, they
understand the value of each day. While they face their illness, the
support of palliative care in
controlling pain and other symptoms can make each day a more positive
experience that allows the
patient to make the most of their time with their families like:
• Puts the patient's desires, goals, and decisions first.
• Supports the patient and family
• Helps patients and families understand treatment plans.
• Improves quality of life
• Provides pain and symptom control
• Focuses on body, mind, and spirit
• Reduces unnecessary hospital visits
• Receive medical, social, emotional, and spiritual care from people who
know what you are
going through
• Receive guidance and support in dealing with the healthcare system and
individual
healthcare needs
• Don’t let the symptoms of a chronic illness or the side effects of its
treatment stop you from
living your life

Components of Palliative Care

The components of palliative care are those of good clinical practice.
Usually, healthcare
professionals tend to focus mainly on organs and their diseases. Palliative
care recognizes that people
are much more than organs; their minds, spirit and emotions are all part
of who they are. It also
acknowledges the patient's families and communities. So, the problems a
sick person and their family
face are not just confined to the disease; there may be pain and other
symptoms in conjunction with
psychological, social, and spiritual concerns. Sometimes problems in one
area may worsen others,
e.g. pain is often worse when people are anxious or depressed. When we
address all these areas, we
are helping the whole person. It is this holistic approach that distinguishes
palliative care from
conventional medical care.
COMPONENTS OF PALLIATIVE CARE
Every care sphere is only adequate considering its relationship with the
other two. A holistic
approach, incorporating the whole spectrum of care –medical, nursing,
psychological, social,
cultural, financial, and spiritual– is a good practice of palliative care. This
usually necessitates
genuine interdisciplinary collaboration and social interventions. They
include:
• Safety of the patient and the caregiver
• A caring attitude with the effectiveness of the interventions
• Comfort with both physical and psychological
• Consideration of individuality, including the individualization of the
interventions and
treatment
• Caregiver’s support
• Cultural considerations
• Consent
• Choice of place of care
• Communication

Clinical context and appropriate treatment

• Comprehensive inter-professional care
• Continuity of care
• Crisis prevention
• Care excellence with adequate and updated knowledge and necessary
skills
• Fair use of resources
When we address all these areas, we are helping the whole person. It is
this holistic
approach that distinguishes palliative care from conventional medical
care. No single sphere of care
is adequate without considering its relationship with the other two—this
usually necessitates genuine
interdisciplinary collaboration and social interventions.
Palliative Care Team
The holistic nature of
palliative care is ideally provided
by a multi- disciplinary or
interdisciplinary team of
professionals and other people
who have received proper
training in the field. Members of
this team can include but are not
restricted to doctors, nurses,
psychologists, social workers,
counsellors, social workers,
dieticians, physiotherapists,
spiritual leaders occupational
therapists, and music and art
therapists. Volunteering is when
someone spends unpaid time
doing something to benefit
others. An important volunteer
task in palliative care is to
provide emotional and social
support, as well as
companionship, which is connected to the idea that the volunteer can
become a friend to the patient.
Hospitals, home care agencies, cancer treatment centers, and long- term
care facilities may offer
it. Communication and coordination are critical to the team's success in
reducing any stress, fear,
exhaustion, and anxiety experienced by the patient and the family.
Where can Palliative care be given?
Palliative care can be provided at small Primary Health Centers (PHC),
secondary-level
hospitals, referral hospitals, and the patient's regular treatment. It should
be part of existing health
care at all levels of care. Even in far-off areas, low-cost, effective palliative
care can be delivered as
primary care. Most palliative care is needed in the community and can be
provided in villages by
training doctors, nurses, community health workers, volunteers, and
family members. Some patients
with complex symptoms may need to be referred for specialist palliative
care.

Models of Palliative care provision

The service should ease the patient's stay and care in the home setting
whenever possible.
The following are ways in which care can be delivered.
• Out-patient Services: Addresses the needs of ambulatory patients. In
many PC units, as the
disease progresses and the patient gets sicker, he continues to access PC
services through his
caregiver visiting the OPD, thereby reducing the frequency of his visit.
• Hospital-based palliative care: Operates with or without dedicated
beds in a secondary or
tertiary referral hospital. Here patients are admitted for symptom control
and occasionally endof-
life care.
• Stand-alone In-patient palliative care unit Hospice: What makes a
hospice different from a
hospital is the holistic, personalised approach and treatment plan, along
with the attitude and
focused commitment of the staff.
• Day palliative care unit: It is a setting for caring for the patients living
at home but brought in
daily for clinical and social care. These are community-based service
centers mostly run by
Non- Government Organizations.
• Home-based palliative care services (HBPC): This is based on
caring for patients at home.
Some patients may be too sick to be travelled to clinics, and some may
have economic issues.
There is continued need-based care for homebound patients. Home-based
palliative care aims
to provide comfort and support to the patient and their family and help
them manage the
physical, emotional, and spiritual challenges that come with a serious
illness. Home- based
palliative care can be provided by a team of healthcare professionals,
including doctors, nurses,
social workers, and chaplains, who work together to address each
patient's and their family's
unique needs by visiting them at their homes periodically. The team may
provide services such
as pain management, symptom control, emotional and spiritual support,
and assistance with
daily activities.
Community-based palliative care services (CBPC): Home-based
services can become even
more effective when the local community takes ownership and actively
provides services within
their locality. Home care in India is considered better because most
patients are more
comfortable. It is cheaper and allows the family to care for their loved one
without travelling or
losing employment. Social support is also more readily available in their
native place. Most of
the problems are social and beyond the scope of a physician, nurse, or
hospital to solve. Thus,
most palliative care is required in the community. Community-based
palliative care (CBPC) is
an emerging field that seeks to integrate palliative and serious illness care
with local healthcare
systems. The resource centre/palliative care organizations train and
coordinates volunteers to
provide home-based care for patients with advanced illnesses, including
cancer, HIV/AIDS, and
neurological disorders. Volunteers may provide practical assistance, such
as helping with
bathing and feeding, or emotional and spiritual support, such as listening
and providing
companionship. These organizations offer training and support to
volunteers and may also
provide opportunities for volunteers to contribute to other aspects of
palliative care, such as
fundraising, advocacy, and public education. Good quality home care
services, with
participation of family and trained volunteers can help in reversing the
present trend of
financially and emotionally expensive institutionalized health care models.
In addition, it can
free up hospital beds for much needed emergency care.

Differences Between Conventional and Palliative Care

Approaches
Usually, healthcare professionals focus on physical problems – organs and
diseases. Palliative
care recognizes that people are much more than their organs; their minds,
spirits, and emotions are
all part of who they are. It also acknowledges the families and
communities to which they belong.
So, the problems a sick person faces, and their family are not just
physical; there may be a
psychological, social, and spiritual concern that is as important as any
other problem. Sometimes
problems in one area may worsen other existing issues; for example, pain
is often worse when
anxious or depressed. Only when we address all these aspects, our care
can be helpful to the patient.
Let us focus on what we can do to care rather than be discouraged by
what we cannot cure. This holisticapproach distinguishes Palliative care
from conventional medical care. Palliative care is not
primarily aimed at the length of life. Still, improving quality of life so that
the remaining time, be it
days, months, or years can be as comfortable, peaceful and fruitful as
possible.
Fig.1.9: THE TRAINED VOLUNTEERS IN KERALA
TRANSPORTING A PERSON IN THE APPROPRIATE MANNER
ACROSS A DIFFICULT TERRAIN

Conventional approach Palliative approach

 The disease is the central concern.
 The physician is the general
 Intent – curing.
 The disease is a problem to be solved.
 "Don't just be there, do something."
 The goal is to improve the quantity of life.
 Death: A failure of treatment to be
prevented at all costs.
 The valuable approach in caring for acute
episodic diseases.
 Human dignity is the central
 The patient is sovereign.
 Intent – healing
 The disease is an experience to be lived.
 "Don't just do something… be there."
 The goal is also to ensure life and dea
with dignity.
 Death: An inevitable reality, neither to b
hastened nor postponed at the cost o
quality of life
 The valuable approach in caring for chron
progressive disease.

COMPARISON OF CONVENTIONAL BIO-MEDICAL AND PALLIATIVE

CARE APPROACHES
Ethical Aspects in Palliative Care
Palliative care providers meet many issues and ethical dilemmas while
caring for patients; are we in
the right way? Can this intervention improve the quality of life of our
patients? This can only be
solved by understanding ethical principles and precedents, which will help
us decide while providing
care to them. Ethics in palliative care provides guidelines and codes for
the PC provider's duty,
responsibility, and conduct. As we practice Nightingale Pledge as the
guiding principle in nursing,
23
similarly, doctors use the Hippocratic Oath. Modern medical ethics was
developed in the Nuremberg
Code. In 1948 the Declaration of Geneva gave the laws and policies; it
was modified in 2006 and, in
1964, incorporated in the Declaration of Helsinki, and the latest
modification was made in
October 2008. Nurses in palliative care settings must be familiar with their
legal, ethical, and
professional obligations.
There are a variety of legal and ethical issues relevant to the palliative
care nursing context:
• Confidentiality
• Right to refuse
• Competence and ability
• Proxy decision-making
• Euthanasia or 'assisted suicide'
• The provision of artificial nutrition and hydration
• Withholding or withdrawing other life-prolonging treatments
• Organ and/or body donation
As you have seen throughout this section, various legal and ethical issues
are relevant to the palliative
care nursing context. In all nursing contexts, including palliative care
nursing, ethical decisions are
based on several key concepts:
• Autonomy: a commitment to enabling patients to make decisions in
their best interests. This
involves respecting what a patient considers to be in their best interests,
provided they can
decide on and communicate this.
• Beneficence: It is doing good for the patient and relevant others
• Non-maleficence: It is no harm to the patient or appropriate others.
This involves weighing
therapy's possible harms and anticipated benefits to decide what is best.
• Justice: ensuring the care provided to a patient is fair and equitable.
And other two critical principles are:
1. Dignity - the patient and the persons treating the patient have the
right to dignity.
2. Truthfulness and Honesty - the concept of informed consent and
truth-telling
World Health Organization (WHO) and various national bodies/associations
of palliative care, with
their continuous effort in most countries, have taken steps to ensure that
relief from pain is a legal
right and availability of Morphine is a societal responsibility. Everyone who
needs palliative care
should never be denied. It will be considered a violation of human rights.
Therefore, as PC providers,
we need to manage their concerns like pain and symptom control, psycho-
social care, and end-of-life
issues while respecting their dignity, and ethical care must be provided.
Need for Palliative Care in India
• Less than 4% of India's 1.3 billion people have access to palliative care.
• One in five suicides in India is committed by a person living with a
progressive, chronic, or lifelimiting
condition.
• Every year, catastrophic health expenditures push fifty-five million
people below the poverty line
in India.
• While the lower-income groups suffer significantly due to the above
reason, paradoxically, the
affluent in our country are also marginalized due to the absence of
palliative care in healthcare
institutions, including the government and private sectors.
• Millions of people cannot access a healthcare facility because they are
bed-bound or elderly and
24
living alone with no one to accompany them. Care must reach their
homes.
• Socially and culturally marginalized groups – women, children, the
Lesbian, gay, bisexual, and
transgender (LGBTQI) community, people with mental health conditions,
migrant populations,
prisoners, and geographically isolated groups –are often forgotten.
Equitable care must reach
people, whoever they are, wherever they are, whenever they need it.
• There is a huge need for palliative care in India. Out of the 7 million
people who die yearly, over
5 million need palliative care, but less than 4% get palliative care. There
are 2.8 million new
cancer cases every year. Two-thirds of these are incurable when they
reach the hospital, and 70
to 80% have severe pain. Almost 80% of hospitalized HIV/AIDS and 40 to
50% of heart failure
patients have moderate to severe pain. Unfortunately, less than 4% of
patients get proper pain
relief.
• According to the WHO guideline, palliative care is integral to COVID-19
management.
Health conditions that may need palliative care
People of any age whose health condition commonly result in death or
suffering need
palliative care. Remember: palliative care is provided to people with one
or more medical conditions
which are: (1) active, (2) progressive, and (3) unlikely to be cured. Today,
palliative care can be
applied to many serious or life-threatening conditions, whether terminal or
non-terminal. As
highlighted earlier in this section of the chapter, there are a variety of
conditions for which a person
may be palliated:
• Cancer
• Diseases involving failure of the organs
• Neuro-degenerative disorders like Alzheimer's disease, Parkinson's
disease, Multiple
Sclerosis (MS), and Amyotrophic Lateral Sclerosis (ALS)
• Incurable diseases
• Congenital conditions
• Severe traumatic injury
• Old age
• Palliative care is also essential for some patients with COVID-19
The goal of palliative care is to improve the quality of life. It is essential
to understand that palliative
care is not provided to a person only during the days or hours before their
death. The care starts
from the time of diagnosis of such health conditions mentioned above.
When is Palliative Care Appropriate? Simultaneous therapy
Palliative care works alongside and within other treatment regimes. It
does not replace other
forms of care. It ought to be integrated into existing comprehensive care
of different disease
programs. It should be seen as a part of a continuum of care given to
everyone with a life-limiting
illness.
Many hospital programs, such as comprehensive cancer care centers with
chemotherapy or
radiotherapy services, HIV clinics, and super-specialty centers, are
competent in providing disease
interventions but not well-trained in helping patients with symptom relief
and psycho-social
problems such as anxiety, grief, isolation, and stigma. This often leaves
the patient unsupported and
may influence compliance with curative inputs. When integrated into such
programs, Palliative care
can complete the care inputs and improve compliance with treatments
and overall outcomes.
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Palliative care should accompany curative measures, providing medical
management of
complicated symptoms and side effects and giving social, emotional, and
spiritual support to the
patients and their family. The requirement for palliative care enhances
visibly during critical
transition phases in the disease trajectory. For example, in cancer, as
given below, the need for
palliative care can be perceived at different stages of the disease, and the
inputs required may be
variable. With the progress of the disease, the person's needs may
change, and palliative needs may
overshadow curative treatment.
At diagnosis
There is an increased need for communications here. It is essential to
communicate
effectively with patients and family, provide symptom control and
maximize support to help
complete curative therapy.
E.g., clarifications on the cancer diagnosis, the impact of that cancer,
available interventions
and adverse effects of interventions, and expectations of cure are all to be
discussed with the patient
for decision making.
CONTINUUM OF CARE
Post cure phase
This is a phase with heightened anxiety, where the patient needs
adequate information to
clarify doubts and fears and support their genuine concerns. Due to the
curative therapy, a few
distressing symptoms, e.g., lymphoedema of the arm post-mastectomy,
shoulder pain syndrome after
radical neck dissection, etc., may need competent long-term
management.
At recurrence or when cancer becomes unresponsive to disease-
modifying therapies
Here the symptoms and psycho-social concerns keep increasing due to
progressive disease.
The patient and family require regular medical, nursing, and counselling
while facing complex issues
during illness.
Terminal phase
Here the emphasis would be to allow a dignified, peaceful, and symptom-
free dying without
burdening family resources.
Bereavement support
After the death of a loved one, it may take many months for family
members to accept
their loss and rebuild their life. Supporting them through this process is an
essential part of palliative
care.
Skills Required by Nurses in Palliative Care
Some skills that are important for a palliative care nurse include:
1. Communication skills: Palliative care nurses need to be able to
communicate effectively
with patients and their families to understand their needs, preferences,
and concerns. They
must also be able to communicate with other healthcare professionals to
coordinate care and
provide updates on the patient's condition.
2. Clinical skills: Palliative care nurses must have a solid understanding
of their patients'
medical conditions and treatments. They must be able to assess the
patient's condition,
monitor symptoms, and provide appropriate interventions to manage
symptoms.
3. Pain and other symptom management skills: Pain is a common
symptom for patients
receiving palliative care. Palliative care nurses must have expertise in
pain/other symptoms
management techniques, including medication administration, non-
pharmacologic
interventions, and pain assessment tools.
4. Emotional support skills: Patients and their families may experience
a range of emotions
during palliative care, including fear, anxiety, and grief. Palliative care
nurses must be able
to provide emotional support and counselling to patients and families to
help them to cope
with these emotions.
5. Cultural competence: Palliative care nurses must have an
understanding of cultural
differences and how they can impact a patient's care. They must be able
to provide care that
is sensitive to the patient's cultural beliefs and values.
6. Teamwork and collaboration: Palliative care nurses work as part of a
team of healthcare
professionals, including physicians, social workers, and chaplains. They
must collaborate
effectively with other team members to provide comprehensive care to
patients and their
families.
7. Advocacy skills: Palliative care nurses must be able to advocate for
their patients and ensure
that they receive the care and support they need. They must also be able
to advocate for their
patients' families and help them navigate the healthcare system.
Conclusion
Palliative care aims to relieve symptoms and improve the quality of life of
people with serious
or life-threatening illnesses. It may be included as a part of hospice care,
but it is not the same thing
as hospice care. With palliative care, you can still receive care whether
your condition is terminal.
A team that includes medical and allied health professionals delivers
palliative care to
patients. The