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Palliative Care
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What is Palliative Care?
 Medical care that focuses on alleviating the intensity of
symptoms of disease.
 Palliative care focuses on reducing the prominence and
severity of symptoms.
What is Palliative Care?
 The World Health Organization describes palliative care as
"an approach that improves the quality of life of patients and
their families facing the problems associated with lifethreatening 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 Definition of Palliative Care
Palliative care:
 provides relief from pain and other distressing symptoms;
 affirms life and regards dying as a normal process;
 intends neither to hasten or 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;
WHO Definition of Palliative Care (cont.)
 offers a support system to help the family cope during the
patients illness and in their own bereavement;
 uses a team approach to address the needs of patients and
their families, including bereavement counseling, if indicated;
 will enhance quality of life, and may also positively influence
the course of illness;
 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, and includes those
investigations needed to better understand and manage
distressing clinical complications.
What is the goal of Palliative Care?
 The goal is to improve the quality of life for individuals who
are suffering from severe diseases.
 Palliative care offers a diverse array of assistance and care to
the patient.
The History of Palliative Care
 Started as a hospice movement in the 19th century, religious
orders created hospices that provided care for the sick and
dying in London and Ireland.
 In recent years, Palliative care has become a large movement,
affecting much of the population.
 Began as a volunteer-led movement in the United states and
has developed into a vital part of the health care system.
Palliative vs. Hospice Care
 Division made between these two terms in the United States
 Hospice is a “type” of palliative care for those who are at the
end of their lives.
Image courtesy of
http://www.ersj.org.uk/content/32/3/796.full
Palliative vs. Hospice Care
 Palliative care can be provided from the time of diagnosis.
 Palliative care can be given simultaneously with curative
treatment.
 Both services have foundations in the same philosophy of
reducing the severity of the symptoms of a sickness or old
age.
 Other countries do not make such a distinction
Death
Diagnosis
Bereavement
Specific cancer treatment
Supportive Care
Palliative care
Terminal care
Complexity vs prognosis Flexible, shared, cooperative
Integrated model
Who receives Palliative Care?
 Individuals struggling with various diseases
 Individuals with chronic diseases such as cancer, cardiac
disease, kidney failure, Alzheimer's, HIV/AIDS and
Amyotrophic Lateral Sclerosis (ALS)
Cancer and Palliative Care
 It is generally estimated that roughly 7.2 to 7.5 million
people worldwide die from cancer each year.
 More than 70% of all cancer deaths occur in developing
countries, where resources available for prevention, diagnosis
and treatment of cancer are limited or nonexistent.
 More than 40% of all cancers can be prevented. Others can
be detected early, treated and cured. Even with late-stage
cancer, the suffering of patients can be relieved with good
palliative care.
Palliative Care and Cancer Care
 Palliative care is given throughout a patient’s experience with
cancer.
 Care can begin at diagnosis and continue through treatment,
follow-up care, and the end of life.
Palliative Care and Cancer
 "Everyone has a right to be treated, and die, with dignity. The
relief of pain - physical, emotional, spiritual and social - is a
human right," said Dr Catherine Le Galès-Camus, WHO
Assistant Director-General for Noncommunicable Diseases
and Mental Health. "Palliative care is an urgent need
worldwide for people living with advanced stages of cancer,
particularly in developing countries, where a high proportion
of people with cancer are diagnosed when treatment is no
longer effective."
“Cancer Control: Knowledge Into Action”
 Excerpts from the WHO guide for Palliative Care:
“Palliative care is an urgent humanitarian need worldwide
for people with cancer and other chronic fatal diseases.
Palliative care is particularly needed in places where
a high proportion of patients present in advanced stages
and there is little chance of cure.”
Who Provides Palliative Care?
 Usually provided by a team of individuals
 Interdisciplinary group of professionals
 Team includes experts in multiple fields:
 Doctors
 Nurses
 social workers
 massage therapists
 Pharmacists
 Nutritionists
Volunteers
Physicians
Nurses
Therapists
Patient
and
Family
Home Health
Aides
Spiritual
Counselors
Social Workers
Pharmacists
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
SYMPTOM
PATIENTS (%)
SYMPTOM
PATIENTS (%)
Pain
84
Edema
28
Easy fatigue
69
Taste change
28
Weakness
66
Hoarseness
24
Anorexia
66
Anxiety
24
Lack of energy
61
Vomiting
23
Dry mouth
57
Confusion
21
Constipation
52
Dizziness
19
Early satiety
51
Dyspepsia
19
Dyspnea
50
Dysphagia
18
Weight loss
50
Belching
18
Sleep problems
49
Bloating
18
Depression
41
Wheezing
13
Cough
38
Memory problems
12
Nausea
36
Headache
11
Most Common Symptoms of Patients with Advanced Cancer
Walsh D, Donnelly S, Rybicki L. Support Care Cancer 2000;8:175-179.
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.
Palliative Care Patient Support
Services
2. Symptom management involves treating symptoms other
than pain such as nausea, weakness, bowel and bladder
problems, mental confusion, fatigue, and difficulty breathing
Palliative Care Patient Support
Services
3. Emotional and spiritual support is important for both
the patient and family in dealing with the emotional demands of
critical illness.
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
What Does Palliative Care Provide
for the Patient’s Family?
 Helps families understand the choices available for care
 Improves everyday life of patient; reducing the concern of
loved ones
 Allows for valuable
support system
Image courtesy of mdanderson.org
1.ILLNESS
MANAGEMENT
8. LOSS,
BEREAVEMENT
7. CARE
AT THE END OF LIFE
/
DEATH
MANEGEMENT
2. PHYSICAL
PATIENT &
FAMILY
6. PRACTICAL
3. PSYCHOLOGICAL
4. SOCIAL
5.SPIRITUAL
1. ILLNESS MANAGEMENT
•Primary diagnosis, prognosis, tests
•Secondary diagnosis (for example,
dementia, psychiatric diagnosis, use of
drugs, trauma)
•Co-morbid (delirium, attacks, organs
failure)
•Adverse episodes (collateral effects,
toxicity)
8. LOSS, BEREAVEMENT
•Loss
•Pain (for example, chronic acute,
anticipatory)
•Bereavement planning
•Mourning
7. CARE AT THE END OF LIFE/DEATH
MANAGEMENT
•End of life (businesses ending,
relationships closing, to say goodbye)
•Delivery of gifts (objects, money,
organs, thoughts)
•Creation of legacy
•Preparation for the awaited death
•Anticipation changes in agony
•Rituals
•Certification
•Care of agony
•Funerals
2. PHYSICAL
•Pain & other symptoms
•Conscience level, cognition
•Function, safety, materials:
•Motor (mobility, shallowness,
excretion)
•Senses (hearing, sight, smell, taste,
touch)
•Physiologic (breathing, circulation)
•Sexual
•Fluids, nutrition, wounds
•Habits (alcohol, smoking)
PATIENT & FAMILY
Characteristics
Demographic (age, sex, race,
contact information)
Culture (ethnic, language, nurture)
Personal values, beliefs, practices,
strengths
Development status, education,
alphabetization
Disabilities
6. PRACTICAL
•Everyday activities (personal care,
home work)
•Dependents, pets
•Access to telephone, transport
•Care
3. PSYCHOLOGICAL
•Personality, strengths, behavior,
motivation
•Depression, anxiety
•Emotions (anger, distress, hope,
loneliness)
•Fears (abandonment, burdens, death)
•Control, dignity, independence
•Conflict, guilt, stress, assuming answers
•Self-image, self-esteem
4. SOCIAL
•Values, cultural, beliefs, practices
•Relations, roles with the family, friends,
community
•Isolation, abandonment, reconciliation
•Safe, comforting environment
•Privacy, intimacy
•Routines, rituals, leisure, vocations
•Financial resources, expenses
•Legal (powers of attorney for
businesses, health attention, advanced
directives, last desire/testament
beneficiaries)
5.SPIRITUAL
•Significance, value
•Existential, transcendental
•Values, beliefs, practices, affinities
•Spiritual advisors, rituals
•Symbols, icons
Patient / Family
Characteristics
Demographic (age, sex, race, contact information)
Culture (ethnic, language, nurture)
Personal values, beliefs, practices, strengths
Development status, education, alphabetization
Disabilities
1. Illness management
 Primary diagnosis, prognosis, tests
 Secondary diagnosis (for example, dementia, psychiatric
diagnosis, use of drugs, trauma)
 Co-morbid (delirium, attacks, organs failure)
 Adverse episodes (collateral effects, toxicity)
2. Physical









Pain and other symptoms
Conscience level, cognition
Function, safety, materials:
Motor (mobility, shallowness, excretion)
Senses (hearing, sight, smell, taste, touch)
Physiologic (breathing, circulation)
Sexual
Fluids, nutrition, wounds
Habits (alcohol, smoking)
3. Psychological







Personality, strengths, behavior, motivation
Depression, anxiety
Emotions (anger, distress, hope, loneliness)
Fears (abandonment, burdens, death)
Control, dignity, independence
Conflict, guilt, stress, assuming answers
Self-image, self-esteem
4. Social
 Values, cultural, beliefs, practices
 Relations, roles with the family, friends, community
 Isolation, abandonment, reconciliation
 Safe, comforting environment
 Privacy, intimacy
 Routines, rituals, leisure, vocations
 Financial resources, expenses
 Legal (powers of attorney for businesses, health attention,
advanced directives, last desire/testament beneficiaries)
5.Spiritual
 Significance, value
 Existential, transcendental
 Values, beliefs, practices, affinities
 Spiritual advisors, rituals
 Symbols, icons
6. Practical
 Everyday activities (personal care, home work)
 Dependents, pets
 Access to telephone, transport
 Care
7. Care at the end of life/ death
management
 End of life (businesses ending, relationships closing, to say goodbye)
 Delivery of gifts (objects, money, organs, thoughts)
 Creation of legacy
 Preparation for the awaited death
 Anticipation changes in agony
 Rituals
 Certification
 Care of agony
 Funerals
8. Loss, bereavement
 Loss
 Pain (for example, chronic acute, anticipatory)
 Bereavement planning
 Mourning
Approaches to Palliative Care
A palliative care team delivers many forms of help to a patient
suffering from a severe illness, including :
 Close communication with doctors
 Expert management of pain and other symptoms
 Help navigating the healthcare system
 Guidance with difficult and complex treatment choices
 Emotional and spiritual support for the patient and their family
Palliative Care Is Effective
 Successful palliative care teams require nurturing
individuals who are willing to collaborate with one
another.
 Researchers have studied the positive effects palliative care
has on patients. Recent studies show that patients who
receive palliative care report improvement in:
 Pain and other distressing symptoms, such as nausea or
shortness of breath
 Communication with their doctors and family members
 Emotional and psychological state
Where to find Palliative Care?
 In most cases, palliative care is provided in the hospital.
 The process begins when doctors refer individuals to the
palliative care team.
 In the hospital, palliative care is provided by a team of
experts.
 The Palliative Care Provider Directory of Hospitals at
www.getpalliativecare.org can locate hospitals which provide
palliative care.
Settings for Palliative Care
 Outpatient practice
 Hospital Inpatient
 Unit based
 Consultation Team
Home care
 Nursing Home
 Hospice
Cost of Palliative Care
 Most insurance plans cover all or part of thepalliative care
treatment given in hospitals.
 Medicare and Medicaid also typically cover palliative care.
Palliative Care is Growing
 Data suggest there is growth in palliative care programs
throughout the nation's hospitals, larger hospitals, academic
medical centers, not-for-profit hospitals, and VA hospitals are
significantly more likely to develop a program compared to
other hospitals.
Palliative Care is Universal
 Numerous governments have already adopted national
palliative care policies, including Australia, Canada, Chile,
Costa Rica, Cuba, France, Ireland, Norway, Spain, Uganda,
South Africa and the United Kingdom.
Palliative Care in WPRO
 The Western Pacific Regional Office (WPRO) represents the
WHO in 37 countries of Asia Pacific.
 About a quarter (25%) of the countries in the WPRO region
have an established system (“approaching integration”) for
palliative care that encompasses the entire country or have
services typically in large cities or highly populated regions
(“localized provision”).
Countries with established systems
 Australia
 In 1987, Ian Maddocks accepted the world’s first Chair in Palliative Care at
Flinders University.
 Palliative care is recognized as a medical specialty in 2005.
 Around 320 palliative care services are operational.
 Japan
 Palliative care standards were first introduced in 1997.
 Palliative care education is included in the curriculum of most medical
schools in the country and all nursing schools.
 120 services related to palliative care are available country-wide.
 Singapore
 13 organizations providing palliative care.
 Palliative care module added to medical school curriculums.
Countries with established systems
 Malaysia
 In 1998, the Government began requiring every district and general hospital
to introduce a palliative care provision.
 Mongolia
 Palliative care incorporated into National health plan.
 Palliative care module included in medical school curriculum.
 New Zealand
 A palliative care education program has been established for care assistants.
 41 services are currently delivering palliative care throughout the country.
Countries with localized provisions
 China
 South Korea
 Philippines
 Vietnam
Countries with building capacity
 Brunei Darussalam
 Fiji
 Papua New Guinea
The countries are aiming to create conditions for the
development of programs focused on palliative care.
Countries with no palliative care
 American Samoa
 Northern Mariana Islands
 Cook Islands
 Palau
 French Polynesia
 Pitcairn Islands
 Guam
 Samoa
 Kiribati
 Soloman Islands
 Laos
 Tokelau
 Marshall Islands
 Tonga
 Micronesia
 Tuvalu
 Nauru
 Vanuatu
 New Calendonia
 Wallis and Futuna
 Niue
WPRO Palliative Care Systems
The model of intervention
The Square of Care
How do you
want to be care?
Definition
 "An approach that improves the quality of life
of patients and their families facing problems
associated with life-threatening illnesses
through prevention and relief of suffering by
early identification and impeccable
assessment and treatment of pain and other
physical, psychological and spiritual problems”
WHO 2002
First of all
Family
Patient
You
matter
Main aims
Improve the Quality of
Life
Promote comfort
Avoid the avoidable
suffering
Building Capacity :
empowerment to adjust,
relief and support the
unavoidable suffering
Wellbeing
Comprehensive Care
OMS 2002
Values
Respect
their
values
Active,
alive
conception
Trust
Integrity
Patient
and
relatives
Honesty
Principles
•We are focused on the patient and his/her
family
•We are Accessible
•We are Collaborative
•We provide high quality:
•We are Safe and Effective
•We are based on Evidence
•We have resources
Ferris and Gómez- Batiste
10 instruments for palliative care
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
Needs assessment.
Systematic therapeutic Plan.
Symptom control.
Emotional support.
Information and communication.
Clinical ethics as the method for decisions
Change in the micro organization: the team work
Change in the organization of resources.
Evaluation and monitoring results quality and results.
Education, training, and research
And….. Advance Care Planning and Case management
and continuity of care
The Model of Care
The model of ICO
Characteristics of the model
• Centered on the relation Patient-Professional
• “Style” and behaviors related to the individual
professional values, and skills
• Not only based on technical aspects
• Applicable by any professional, and in any context,
service and situations
• Pragmatic, feasible
“You matter”
Values: commitment, empathy,
compassion, honesty,
congruence, trust, confidence, ….
Respect / Spiritual / Dignity / Hope
Clinical
Communication
Ethical /ACP
Continuity
Basic Competences
Context: Team / Atmosphere / Values
Organization oriented to patients and families
The Basic Competences
Basic Competences I
1. Clinical skills:
•Assessment
•Disease management
•Symptom control
•Use of drugs: opioids and others
Basic Competences II
2. Communication skills.
 Therapeutic attitudes
 Basic Skills to communicate
 Assertively
 Counseling
 To recognize the emotional issues
 Validation
 Crisis management
 Emotional support
Modified from J Barbero, 2009
 Setting
Basic Competences III
3. Ethical decision- making
Patient
without
Advance
Directives
Limit
therapeutic
effort
Assisted
Suicide…
Most
frequent
dilemmas in
terminal ill
Palliative
Sedation /
Terminal
Sedation
Demands of
Euthanasia
Hidratation
/ Nutrition
We have
to….
We have to preserve the
patient’s authonomy, promoting
its welfare, always trying not to
be maleficent and in a context of
an equal distribution of resources
for everyone
Basic Competences III
3. Advance Care Planning II
Professionals have to explore
Preferences/
Wishes
Objectives/
Expectatives
Values
Advance
Directives
A process and an attitude…
Advance Care Planning
As a process:
 Qualitative and progressive
 Carefully
 Integrative: patient and family
 Preventive
 Registered
 Follow-up
As an attitude:
 To recognize “the other”
 Based on respect
 Communication skills are
necessary
 Competence required
 Confidence
 Accessibility
Basic Competences IV
4. Continuity of care and Case Management
 Continuity: commitment to accessibility in any circumstance, specially







in response to crisis
Reference: being advocate of patients’ trajectory
Case management : planning and follow up of appropriate resources
and accessibility
Interdisciplinary Coordination
Share information
Continued learning
Care-givers’ support
Care in the dying phase
The nuclear needs
Nuclear needs of patients
“To be considered as a person”
Spiritual
2. Dignity
3. Hope
4. Respect
1.
1. Spiritual needs
 Sense of life/ Significance
 Trascendence
 Legacy
 The others ( the love one’s)
CONNECTIO
N
SENSE
TRASCENDENTA
L
SPIRITUAL RELIEF
2. Dignity
The essence of “You Matter”
A: Attitudes
B: Behaviors
C: Compassion
D: Dialogue
3. Hope/ Hopefully
Redirecting
main goals
( Survival vs
Comfort)
Identifying
their own
skills
Increasing
hope
Improving
autocontrol
Promoting
Adaptative
goals
Giving
Emotional
and Social
Support
4. Respect
To be recognized as a person
To care as we would like to be cared….
We need to explore more…..
Personal Behaviors and Values
Personal behaviors / and values
• Empathy
• Compassion
• Commitment
• Coherence
• Honesty
• Congruence
• Others
Model of micro-organization
A systematic approach to multidimensional
needs practiced by a competent
interdisciplinary team with ethical decisionmaking, case management, and advance care
planning
In conclusion……
Bibliography
 http://www.who.int/cancer/palliative/definition/en/
 http://www.who.int/cancer/media/FINAL





Palliative%20Care%20Module.pdf
http://www.cancer.gov/cancertopics/factsheet/support/pa
lliative-care
http://en.wikipedia.org/wiki/Palliative_care
http://www.getpalliativecare.org/whatis
http://www.nlm.nih.gov/medlineplus/palliativecare.html
http://www.nhpco.org/i4a/pages/index.cfm?pageid=5953
http://www.liebertonline.com/doi/abs/10.1089/jpm.200
5.8.1127