PALLIATIVE CARE

FRANCIS BOMER MSN RN

OUTLINE

• Define palliative care

• Differentiate palliative care from hospice care
• Explain why palliative care is integral to primary care
• Describe the domains of palliative care
• Discuss social aspects of care
• Recognize members of the multidisciplinary care team
• Identify palliative care assessment tools that may be used in primary care settings
DEFINITION OF 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 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.
• 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
• Palliative care is the active total care of the patients’ 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 patient receives treatment directed at the disease.
• Health providers must evaluate and alleviate patient’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 even if resources are
limited.
• It can be provided in tertiary care facilities, community health centers and
even in patient’s homes.
COMPONENTS OF PALLIATIVE

• 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.
• 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.
• 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.
• When we address all these aspects, our care can be helpful to the patient. It
is important to focus on what we can do to care rather than be discouraged
by what we cannot cure.
• This holistic approach 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.
DIFFERENCE BETWEEN THE OLD AND NEW
CONCEPT
Conventional approach • "Don't just be there, do something."
• The disease is the central concern. • The goal is to improve the quantity
• The physician is the general of life.

• Intent – curing. • Death: A failure of treatment to be

prevented at all costs.
• The disease is a problem to be
solved. • The valuable approach in caring for
acute episodic diseases.
PALLIATIVE APPROACH

• Human dignity is the central • The goal is also to ensure life and
• The patient is sovereign. death with dignity.

• Intent – healing • Death: An inevitable reality, neither

to be hastened nor postponed at the
• The disease is an experience to be
cost o quality of life
lived.
• The valuable approach in caring for
• "Don't just do something… be
chronic progressive disease.
there."
• Palliative care address all these areas, by
helping the whole person.
• It is this holistic approach that distinguishes
palliative care from conventional medical care.
PALLIATIVE CARE AS INTEGRAL TO PRIMARY CARE

COST IMPLICATION QUALITY OF LIFE

SCOPE OF CARE

• Aims to improve a person's quality of life when faced with a severe or life
threatening 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.
• Structure and Processes of Care • Spiritual Aspects of Care
• Physical Aspects of Care • Cultural Aspects of Care
• Psychological Aspects of Care • Care of Imminently Dying
• Social Aspects of Care • Ethical & Legal Aspects of Care
SCOPE OF CARE
AIMS OF PALLIATIVE CARE

• 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.
DIMENSIONS OF PALLIATIVE CARE

• 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.
DOMAINS OF PALLIATIVE CARE

• 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.
• 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
The patients may have: • Fear of pain or other symptoms
• Fear of isolation • Fear of leaving unfinished tasks
• Fear of loneliness • Fear of dying
• Fear of being a burden /
helplessness
• 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.
STRUCTURE AND PROCESS OF CARE

• Begins with a comprehensive assessment and a care plan that is consistent

with a patient’s values and goals
• Advance Care Planning: patient and family treatment goals are clearly
documented
• The primary non-medical needs expressed most frequently include: a need
to express emotional pain, a need to explore spiritual pain, and a need for
practical financial and legal help.
PHYSICAL ASPECTS OF CARE

Assessment should focus on relieving symptoms, improving/maintaining

quality of life and functional status;
• -Symptoms may include pain, shortness of breath, fatigue, nausea,
constipation, etc.
• -Lack of assessment is the most common cause of unrelieved pain
• •Care is delivered in a manner that is patient centered as defined by the
patient's wishes
PSYCHOLOGICAL AND PSYCHIATRIC ASPECTS
OF CARE

• Psychological status needs to be assessed and managed

• Watch for signs of family members struggling with psychological issues
• Programs and resources should be available to patients and families based
on assessed need for services
• Process for appropriate referrals:
• -Directly
• -Through Consultation
• -Specialist Referral
SOCIAL ASPECTS OF CARE

Social assessment should address environmental and social factors,

including, but not limited to:
• -Social support network
• -Financial barriers
• -Access to care (e.g. transportation, medications)
• Family Meeting: powerful clinical tool for completing the comprehensive
assessment and planning process
• Warm handoffs and referrals to local/community service providers
SPIRITUAL, RELIGIOUS, AND EXISTENTIAL ASPECTS OF
CARE
• Spirituality is a multifaceted, multidimensional human
experience that includes religious and nonreligious factors
• Care Team members must acknowledge their own
spirituality
• Offer support of spiritual counselor: priest, pastor,
chaplain, rabbi, imam, or other religious leader
• Faith, Importance, and Influence, Community and
Application (FICA) assessment
CULTURAL ASPECTS OF CARE

• Racial and ethnic minorities experience persistent health care disparities

• Cultural origins influence the way patients and health care providers think
about palliative and end of life care
• Respect values, beliefs, and traditions related to health, illness, family
caregiver roles and decision making
• Incorporate culturally sensitive resources and strategies into the plan of
care
• Remove barriers to communication by ensuring that linguistic needs are
met
CARE OF IMMINENTLY DYING

• Whenever possible, early access to • Signs and symptoms of impending death

hospice care should be facilitated are recognized and communicated to
patients and families
• Place particular emphasis on days
• Provide support and education to the
leading up to and just after death of the
family
patient
• -Assist in making critical decisions
• -Ensure patient receives adequate
management of pain and other symptoms • -Relieve possible burdens imposed on
loved ones
• -Avoid inappropriate prolongation of
• -Develop post-death care and
dying
bereavement follow up plan
• -Address spiritual and cultural needs
ETHICAL AND LEGAL ASPECTS OF CARE

• Address guardianship and goals of care

• -Identify the health proxy
• Honor patient preferences or those made by legal proxies or surrogate
decision makers
• Maintain professional boundaries
• Remain knowledgeable of organizational policies
• Communicate prognosis essential for informed decision making
ETHICAL PRINCIPLES

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
• Dignity - the patient and the persons treating the patient have the right to
dignity.
• Truthfulness and Honesty - the concept of informed consent and truth-
telling
PATIENT CENTERED APPROACHES

• Decisions are driven by the patient's goals of care and wishes

• Provide support to patient to express wishes
• Provide support to family and caregivers so that patients may realize goals
of care
• Navigate, coordinate a complex/confusing healthcare system, understand
the plan of care
MEMBERS OF THE MULTIDISCIPLINARY CARE
TEAM
CHALLENGES AND OPPORTUNITIES
VALUE OF PALLIATIVE CARE IN PRIMARY
CARE
Increased primary care involvement in the care of seriously ill individuals is
associated with:
• 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
HOW AND WHERE OF PALLIATIVE CARE
PALLIATIVE CARE ENHANCED CARE MODEL
VALUE OF ASSESSMENT TOOLS

• Patient assessment is a critical step in identifying palliative care needs

• PCPs need to consider the palliative care needs of all patients with life-
limiting illnesses including metastatic cancer, end stage organ failure and
advanced degenerative neurological conditions
• Assessment should address prognosis, current and anticipated symptoms,
distress, and the availability and support needs of family and caregivers
EXAMPLES OF TOOLS USEFUL IN PALLIATIVE CARE
MODELS OF PALLIATIVE CARE

• Out-patient Services: Addresses the needs of ambulatory patients. In

many palliative care 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 end of-life care.
• Stand-alone In-patient palliative care unit Hospice: What makes a
hospice different from a hospital is the holistic, personalized 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.
• 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.