Principles

Of
Palliative Care

DR. GEORGE MUGENYA

MBCHB, M.MED, FCS (ECSA)
 Palliative care
• Palliative Care is defined by WHO as “the active
total care of the patients and their families by a
multi-professional team at a time when cure is
not an option and life expectancy is relatively
short.
• It responds to physical, psychological, social
and spiritual needs, and extends
if necessary to support in
bereavement.”
(WHO1990)
 Palliative care…
Treatment approach that improves quality
of life of patient and their family members,
that deal to the diseases that threaten on
life, by prevention and alleviation of the
suffering by means of early detection and
professional estimation of pain and
additional symptoms, bodily, psychosocial
and spiritual.

(WHO 2002)
 AAHPM Definition of Palliative
Care:
“Comprehensive, specialized care provided by
interdisciplinary team to patients and families
living with life-threatening or severe advanced
illness expected to progress toward dying and
where care is particularly focused on alleviating
suffering and promoting quality of life.
Major concerns are pain and symptom
management, information sharing and advance
care planning, psychosocial and spiritual
support and coordination of care.”
AAHPM 2003
 Other Descriptions of PC
1. “Care beyond cure”
2. “Low technology and high touch”
3. “Adding life to days not just days to Life”
4. Palliative care means never saying “there
is nothing we can do” but saying “there
is always something we can do”
 All Must Die Someday
• It is not an ‘if’ but a ‘when’, ‘where’ and ‘how’.
• If death is inevitable, we can only hope for a
good death…or perhaps we can try to plan for
one.
• Advance care planning may mean the
difference between a good death and a bad
death.
 Death does not mean health provider
failure.
 Why Palliative Care?
“Health is a fundamental human right
indispensable for the exercise of other human
rights.
Every human being is entitled to enjoyment of
highest attainable standard of health
conducive to living a life of dignity”
WHO (2002)
 This link between human rights and health
care is well argued and forms the basis
for asserting Palliative care as
a universal right.
 Symptoms at the End of Life:
Cancer vs. Other Causes of Death
Cancer Others
Pain 84% 67%
Trouble breathing 47% 49%
Nausea and vomiting 51% 27%
Sleeplessness 51% 36%
Confusion 33% 38%
Depression 38% 36%
Loss of appetite 71% 38%
Constipation 47% 32%
Bedsores 28% 14%
Incontinence 37% 33%

Seale and Cartwright, 1994

 Key Principles Of Palliative Care

1. Holistic approach:
 Holistic means patient is viewed as a person with
physical, psychological, social, spiritual and cultural
gifts and needs which are special to that person.
 Each of these aspects must be taken into account.
 The team takes a holistic approach, using the
different talents in a team to assist in various
aspects of the illness.
 Physical
Spiritual
 Pain caused or related to the
 Feelings of meaninglessness disease itself
 Guilt  Pain related to therapy
 Regret  Incidental/benign pain
 Unresolved religious questions  Other symptoms

PAIN
Social Psychological

 Interpersonal relationships  Depression

 Family problems  Anger
 Legal problems  Mood and morale
 Environment  Personality
 Culture  Anxiety
 Socio- economic  Self esteem
 Gender role and sexuality  Fear
 Family Beliefs  Past experience
 Language barriers  Communication
 Culturally insensi tive management
 Key Principles of PC…
2. Patient centered:
The patient’s wish is the focus of care.
3. Teamwork and partnership
4. Appropriate ethical considerations:
- Beneficence : Do good
- Non-maleficence: Do no harm
- Autonomy : Patient’s right to decide
- Justice : Fairness
 Key Principles of PC….
5. Continuum Of Care:
 Involves a network of resources and services
that provide holistic and comprehensive support
for the patient and family caregivers.
i.e: Home – community agency – lower level
health units – hospital.
 Nature of Suffering and
Goals of Medicine

Relief of suffering and cure of disease must be seen as

twin obligations of medical profession that is truly
dedicated to the care of the sick.

Physicians’ failure to understand the nature of suffering

can result in medical intervention
that, not only fails to relieve suffering but
becomes a source of suffering itself.

Cassell, Eric NEJM 1982;306:639-45.

 Restoring The Balance

Palliative Care
Life Prolonging Care
 Old Model Of Care
ABRUPT TRANSITION TO HOSPICE

D
I CURATIVE PALLIATIVE
A D
D
G D
E
N A
PROLONGATION RELIEF OF
O T
OF SUFFERING
S H
I LIFE
S
Modern Model Of Care
 Most Recent MODEL OF CARE
Continuum of Care

Curative Treatment Bereavement Care

(Cancer, CHF, COPD, AIDS, Hospice
Dementia debilitating
Neurological diseases …)

Palliative Treatment

Diagnosis Death
 What is Hospice?
 The primary goals of hospice care are to:
1. Provide comfort.
2. Relieve physical, emotional, and
spiritual suffering,
3. Promote the dignity of terminally ill
persons.
 Hospice care neither prolongs nor
hastens the dying process
 Hospice Care vs Palliative Care
Hospice Care
Hospice care is
appropriate during the last 6
months of life.
Hospice care usually
cannot be given at the same
as curative or aggressive
treatments.
Hospice care most often
provides care in a patient's
home setting.  
Palliative Care
Palliative care should start at
the time of diagnosis.
Palliative care occurs
simultaneously with aggressive
or curative treatments, often
managing symptoms that
these therapies cause.
Palliative care is most often
done in the hospital setting.
 Attributes of PC
Success of palliative care depends on:
• Individualized patient care
• Support for the family
• Interdisciplinary teamwork
• Trust
• Safety
• Effective Communication
 Individualized Patient Care
• Individualized patient care focuses on the
physical, emotional, social and spiritual needs
for that particular patient.
• It focuses on all aspects of the patient care,
rather than just controlling the symptoms.
• Patients and their family members are asked to
contribute to their specific goals of care.
• Care is focused on the patient and their
idea of quality of life.
 Support for the Family
• Palliative care does not focus solely on the
patient, but rather encompasses both the
patient and family as units of care.
• Family support is incredibly important to the
patient at end-of-life.
• Palliative care and resources can offer
opportunities for families to heal relationships,
provide professional support in terms of
counseling, respite care, financial
counseling and bereavement
support.
 Interdisciplinary Teamwork
• Many different health care professionals are
involved in palliative care programs: physicians,
nurses, social workers, chaplains, nurse aides,
dieticians and volunteers.
• All members of the palliative care team work
together, along with the patient and family, to
create the best goals of care for the patient.
 Trust

Patients must be able to trust the judgment of the team in

that they will provide the best care available.
It is crucial for the palliative care team to create a trusting
relationship with the patient and family in order for the
patient to receive the most beneficial care available to them.
Patients and family members must also be able to trust in
the treatments given.
It is up to the medical team to properly educate the patient
and family about the treatments the
patient will be receiving and why they are
important.
 Safety

Continuity of Care: Competence of

 By maintaining continuity Care:
of care, patients and  Patients and family
family members have a members have a feeling
feeling of safety. of safety when they
They are able to build believe that competent
trusting relationships with care is being provided.
team members, and do
not have to worry about
new team members that
may not know the
patient’s goals of care,
needs or wants.
 Effective Communication
Communication is vitally important in palliative
care.
It allows the patient, family and care team to
have open conversations about advanced care
planning and prognosis.
Palliative Care allows patients and family
members to get involved in the care and to help
create goals of care.
Team members must maintain open
communication with patient and family
in order to continually develop and
change care plan.
 Consequences Of Ideal PC
Patient Consequences:
Advanced Care Planning.
Increased Coping.
Increased Quality of Life.
Relief of Suffering and
Symptoms.
Enhancement of Human
Dignity.
Effective Closure.
Family Consequences:
Effective Closure.
Improved Bereavement
Outcomes.
Healing of Relationships.
Decreased Guilt.
Decreased
Psychological Distress.
Improved Coping.
 Barriers to Palliative Care:
• There are 3 main categories of obstacles for
patients to receive palliative care:
– Family members creating obstacles.
– Health professionals creating obstacles.
– Conflict between ideal care and patient’s
wishes.
 Families Creating Obstacles
Lack of openness of communication between
family members and patient and between family
members and health care team.
Forbid the health care team to discuss the
patient’s diagnosis and prognosis with the
patient.
Demand complete control over the patient’s
goals of care.
Want to continue treatment that is futile
to the patient.
Limit medications or care delivered
to the patient.
 Health Professionals Creating Obstacles

• Double Effect (eg. pain relief -vs- death)

• Active Euthanasia
• Own Fear of Dying
• Medicare Laws
• Opioid Prescribing Laws
• Lack of Knowledge about Palliative Care
 Conflict Between Ideal Care and Patient
Wishes

• Patient may want to stay at home, even when

symptoms are too great to be treated at home.
• Fear of hospitalization.
• Wish to maintain their autonomy.
• Loss of control.
Are we meeting our patients and their families
wishes when they enter end of life pathway ?
THANK YOU