PALLIATIVE ETHICK ISSUE

FOR ANASTETIK NURSE

Dr. TJOKORDA GDE DHARMAYUDA, SpPD KHOM
Finasim
 CURICULUM VITAE
• Name : dr. Tjokorda Gde Dharmayuda,. SpPD,. KHOM,.
Finasim
• Birth : Waingapu, 21 Agustus 1956
• Address : Jl Pratu Made Rambug No 34 A. Br.
Manguntur Batubulan Gianyar Bali. 80250
• Telp./ WA : 081 139 4108.
• Job : Hematology and Medical Onkology Division Staff.
Internal Medicine Departement , Sanglah General Hospital
/ Medical Faculty UdayanaUniversity Bali. Indonesia
 CURICULUM VITAE
• Formal Education :
– Medical Docter : 1983 Medical Faculty Udayana University
– Internist 1993 Medical Faculty Airlangga University
– KHOM 2008 FK UNUD-FKUI-RS Kanker Darmais
• Non Formal Education :
– Yoga Asanas ( when young age )
– Transcendental Meditation ( TM Sidhi ) 1977 - 2000
– Tetada Kalimasada 1997 - 1999
– Rei Ki Tummo Padmajaya. 2000 - sekarang
– Master Yoga Level I- 5 Padma Sejati 2000 - sekarang
 ORGANISATION ACTIVITIES

• Member of IDI . Denpasar, Bali Branch

• Member of PAPDI Bali Branch
• Member / commity PHTDI Bali Branch.
• Member / commity PERHOMPEDIN Bali Branch
• Chief of SP3T Bali Provinc
• Chief of Indonesian Palliative Society Bali Provincy
• Chief of Blood Donor Society Denpasar City
• Commity of Indonesian Cancer Fondation Bali Branch
Coordinator
 UNDERSTANDING
HOSPICE, PALLIATIVE CARE
AND
END-OF-LIFE ISSUES

TJOKORDA GDE DHARMAYUDA

 IT’S ABOUT WE ARE LIVE
• WE ARE A HUMAN
• WE ARE BIRTH, LIVE, DEATH
• WE ARE LIVE TOGATHER WITH OTHERS, BELIVE
AND HANGING TO TRUE SOURCE AND IT’S LOVE
WHO ATTAND ALL FOREVER
• WE ARE CHALLENCE IS HOW WE ARE LIFE
ATTITUDE TILL GOAL OF HUMAN LIFE
• UNDERSTAND THE PROBLEM AND SOLUTION TO
LIVE AS HUMAN AS A TRUE SOURCE LOVE
 MANUSIA
MAKHLUK SPIRITUAL
 HUMAN IS TRUE SOURCE LOVE
SPIRITUAL
EXTERNAL POLUTI0N CONSCIOUSNESS
PHYSIC HAPPINESS
CHEMICAL
BIOLOGY JIWA

HUMAN
BIRTH MIND
ATTITUDE HOPE
NEED
WANTED

SADNES
EGO

BIRTH DIEDTH
DEVELOP AS INTERNAL POLUTION
HUMAN
LATE STATE OF OVARIAL CARCINOMA
PATIENT
 PALLIATIVE & HOSPICE CARE
BACK GROUND
UNIVERSE TRUE SELF BACK HOME

HEALTHY

LIFE

BIRTH SICKS

PALLIATIVE HOLISTIC HEALTH

III – Description Palliative Care

Palliative
Care
Hospice

Medicare
Life Prolonging Care Hospice
Benefit
 JCAHO & End of Life Care
JCAHO Standards

Standard PC.8.70 Comfort and dignity are optimized during end of life
care. EP 1 To the extent possible, as appropriate to the patient’s and
family needs and the hospital’s services, interventions address patient and
family comfort, dignity, and psychosocial, emotional, and spiritual needs,
as appropriate, about death and grief.

PATIENT AND FAMILY RIGHTS (PFR)

PFR.2.2 The organization informs patients and families about their rights and
responsibilities related to refusing or discontinuing treatment.
PFR.2.3 The organization respects patient wishes and preferences to withhold
resuscitative services and forgo or withdraw life-sustaining treatments.
Joint Commission International Accreditation Standards for Hospitals 3rd Edition
Standards Only © 2007 Joint Commission International
PFR.2.4 The organization supports the patient’s right to appropriate assessment and
management of pain.
PFR.2.5 The organization supports the patient’s right to respectful and compassionate
care at the end of life.

CARE OF PATIENTS (COP)

COP.6 Patients are supported in managing pain effectively.

COP.7 The organization addresses end-of-life care.
COP.7.1 As appropriate to the care and services provided, assessments and
reassessments of the dying patient and their family are designed to meet
individualized needs.
COP.7.2 Care of the dying patient optimizes his or her comfort and dignity.

© 2007 Joint Commission International All Rights Reserved 13

 Barriers to Quality End Of Life Care
Lack of knowledge Delayed access to
Aging of the
on part of health hospice &
population
care professionals palliative care

Realities of life Rules &

limiting diseases regulations

• Lack of knowledge of health care professionals can significantly impact

how well patients & their families will have their physical, psychological,
social & spiritual needs managed through the dying process.
• Aging population refers to the approximately 70 million individuals
reaching age of 65 by the year 2030 (Administration on Aging 2000).
Increased life expectancy means increase in number of elderly having to
cope with concurrent chronic illness and their associated physical, social
and spiritual difficulties.
• Delayed access refers to the need for more timely referrals by healthcare
professionals to hospice & palliative care in order for patients and their
families to reap the full benefit of these services.
• Realities of life limiting diseases refers to the failure to acknowledge that
the limits of medicine may lead to futile care. Use of aggressive curative
treatments can prolong the dying process and contribute to physical and
emotional distress of the patient.
• Rules and regulations refers to issues regarding access to care, insurance
coverage and the potential need to hire a caregiver from outside the
family which can contribute to financial barriers to care.
 Quality of life differs from person to person. The patient is the only one who
can define quality of life which is based on his or her own life experiences,
values, and beliefs. It is important to consider each of the dimensions
Physical described here from the patient and family perspective. Quality of life must
well-being
be considered throughout the illness and end of life period to include the time
of death and bereavement periods. It is imperative that healthcare respond to
the psychological and spiritual needs of patients and families coping with life-
threatening illnesses to avoid increasing their suffering and isolation.
Concept of Psychosocial
Suffering well-being Physical well-being: The physical well-being of the patient is affected by
Quality various symptoms due to organic and metabolic changes, disease progression
and debilitation. Physical aspects include functional ability, sleep, rest, and
of Life appetite. Pain is one of the primary concerns of terminally ill patients and
Issues their family members or caregivers. Family members can develop or may have
existing physical needs that impact their ability to care for the patient, as well
as their ability to care for themselves. Physical symptoms can manifest during
the bereavement period as well.

Spiritual Social
Well-being Well-being Psychosocial well-being: Patients experience a wide range of emotions,
psychological issues/concerns, and losses (such as body image and
role/relationship changes) throughout their terminal illness journey and at the
end of life. Communication and support are important components in the
management of the psychological domain.

Social well–being: The social structure and integrity of the family may be threatened. Becoming a burden to one’s family is often a concern to a
patient. Expressions of sexuality may change between partners as illness progresses. Children may show their emotional concerns by isolating
themselves or by acting out in school or at home. Financial concerns may arise due to loss of income. Friends and extended family stop visiting,
creating social isolation for patient and family.

Spiritual well-being: Religion gives expression to a person’s regarding suffering, illness, pain and death. Skillful attention to
maintaining a person’s unique meaning of hope can enhance quality of life and help make the dying process more meaningful to the patient and
family.

Concept of Suffering : Suffering is a highly personal experience and depends on the significance or personal meaning of events and losses. It is a
state of severe distress that threatens the intactness of the individual. Suffering may be associated with an event(s) such as fear of physical
distress, issues regarding family relationships and other roles, perceptions of self, witnessing another’s distress, an inappropriate focus on cure.
Palliative Care & Hospice
during End of Life
An overview of the philosophy of hospice and palliative
care is that dying is a unique experience and part of the
normal life cycle. Support and care is provided using an
interdisciplinary team approach with the focus on
enhancing the quality of life for persons facing a life-
threatening illness across settings.
Palliative care can and should co-exist with curative care.
Introduction of palliative care earlier in the course of an
illness makes it possible to recognize when subtle shifts
occur and allows patients, families and professionals to
adapt goals accordingly.
Goals of care change often throughout the course of
illness by integrating physical, psychological, social and
spiritual aspects of care. Frequent reassessment and
clarification of goals, is needed by the interdisciplinary
team, the patient and family.
In many healthcare settings, during clinical rotations,
students have opportunities to work with patients and
families experiencing the dying process.

16
 Palliative Care

Definition of Palliative Care:

“an approach that improves the quality of life of patients
and their families, facing the problems associated with
life-threatening illness, through them prevention and
relief from suffering, by means of early identification,
impeccable assessment, treatment of pain and other
problems - physical, psychosocial, and spiritual” (World
Health Organization, 2002; Sepulveda et al., 2002).

Eligibility for initiation of Palliative Care:

Palliative care is appropriate and can be implemented at
any time during the illness experience.
 Principles of Palliative Care
* The patient and family (as defined by the patient) are a unit of care.

* No single discipline can fully address the many concerns that patients and
families have during end of life, therefore utilizing the expertise and
combined efforts of the interdisciplinary team members is the key to
providing holistic, comprehensive care.

* The patient and family are at the center of the team.

* Education and support of the patient and family about the dying process
provides essential information and decreases fear. Information needs may
include:
· Management of physical care
· Medications
· Spiritual and emotional needs
· Guidance with practical issues such as insurance coverage
· Scheduling of treatments and what to anticipate
· Coping strategies
· Bereavement support

* Professional caregivers should support and be an advocate for the needs of

the patient and his family so that death is a more meaningful experience for
them
 Hospice
Definition:
Hospice care is the support and care for persons in the final phases
of an incurable disease so that they may live as fully and
comfortably as possible (NHPCO, 2000). Hospice also supports the
surviving family through the dying and bereavement process (Egan
& Labyak, 2001). Hospice provides comprehensive palliative,
medical and supportive services across a variety of settings and is
based on the understanding that dying is a part of the normal life
cycle. Care can be provided in the home, in residential facilities,
long-term care facilities and other settings (i.e. prisons).

Eligibility for Hospice:

Enrollment is limited to those expected to die within six months.
The Medicare Hospice benefit has currently expanded its hospice
service options so that patients/families can receive end of life care
long before the last six months of life to better meet the needs of
patients dying from chronic illnesses.
An additional option that has been made available to patients (and
their families) who are actively in the dying process or have been
determined as terminal is that they can be designated as an inpatient
hospice.
 Principles of Hospice Care

* The Family is the unit of care

* Care involves an interdisciplinary approach to expert medical and nursing

care, pain management, and emotional and spiritual support

* Patient has the right to die pain-free and with dignity

* Loved ones will receive necessary support

* Focus is on caring, not curing

* Care is provided primarily in the home, but can also be provided in free-
standing hospice facilities, hospitals, and nursing homes
 Advance Directive
(also called a Living Will)

• An Advance Directive is a document that lets patients state their

wishes about medical care in the event that they develop a terminal or
irreversible conditions and can no longer make their own medical
decisions (TxPEC, 2009).

• An Advance Directive (Living Will) becomes effective when

1. the patient’s physician certifies in writing that the patient has
a terminal or irreversible condition, and
2. after the patient’s physician writes a “do not resuscitate
(DNR) order specifying the patients wishes to withhold
medical care.
3. The patient may revoke the Directive at any time.
• Hospitals are required by Medicare Conditions of Participation and
JCAHO to inquire about Advanced Directive status upon the patient’s
admission and to instruct the patient about his/her option of having an
Advance Directive if so desired. If the patient has a Directive, the
hospital is required to make it part of the patient’s medical record.
However, hospitals are not required to make the patient create an
Advance Directive or Power of Attorney for medical care.
 Other Laws and Directives
related to End of Life:
• Federal Patient Self Determination Act is a law that allows for
patients to make choices about what is done to their bodies while
they are receiving medical care through the development of the
Advanced Directive (Living Will).
• Texas Natural Death Act (1991) is a state law that allows the
withdrawal or withholding of medical care to be requested by a
competent adult who is terminally ill.
• Texas Medical Power of Attorney Lets the patient name someone
to make decisions about his/her medical care-including decisions about
life support-if he/she can no longer speak for him/herself.
The patient’s attending physician must certify in writing that the
patient is unable to make health care decisions, and file the
certification in the patient’s medical record.
• This person does not necessarily have to be a family member.
• This person may be a Court Appointed Guardian to make
decisions for an individual who is deemed incapable of making
an informed decision.
 Nursing &
Advance Directives
Nurses have a unique opportunity to enact the federal Patient Self-
Determination Act through communication with patients and by
assisting them explore their values and beliefs regarding the end of
life. The nurse can promote patient comfort with decisions
concerning advance directives. They can also be sure that the entire
healthcare teams is aware of the patient’s wishes (Nevidjon & Sowers,
2000).

Note: Any problems/questions associated with Advance Directives or

Durable Power of Attorney should be referred to the nurse in charge.
Each organization has its own policies about who can/can’t witness a
signature.
 BASICS OF PALLIATIVE CARE

MODEL OF NEEDS AND MODEL OF CARE

Tjokorda Gde Dharmayuda

 AGENDA
• We need answers…
• Clinical / individual perspective
• The symptoms and the consequences
• The Model of Needs
• Model of Intervention: SQUARE OF CARE
• Basis of Palliative Care
• Model of care : The Model of ICO
• Basic Competences
• Nuclear Needs
• Personal Behaviors and Values
• Model of Micro-organization
• In conclusion…..
 WE NEED ANSWERS…
• How do you feel when are you suffering?

• How do you want to be care?

• What is a good professional of palliative care?

• The clinical / individual perspective

What is your current situation?

 YOUNG PEOPLE WITH
ADVANCE DISEASE….

OLD PEOPLE WITH

CHRONIC AND
ADVANCE DISEASE….
 McNamara, 2006
Minimal: 50%, Mid-range: 55.5 %, High range: 89.4%
Death trajectories. Lunney JR, et al. Profiles of older Medicare decedents. J Am Geriatr Soc

2002;50:1108-1112 .
 2

Murray, S. A et al. BMJ 2008;336:958-959

3

Murray, S. A et al. BMJ 2008;336:958-959

 CHARACTERISTICS OF TERMINAL SITUATION

• Disease or diseases: Advanced, progressive,

incurable
• Treatment: reduced chance response to specific
• Limited prognosis
• Symptoms: multiple, multifactorial changing,
severe, different by diseases
• Emotional impact on patient, family, and teams
• Frequent crisis of needs
• Frequent ethical dilemmas
• Frequent need and demand of resources

SECPAL 2002, and XGB et al, 2009

THE SYMPTOMS AND THE
CONSEQUENCES
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.

 FREC
90
CONTROL
80
70
60
50
40
30
20
10
0
DEB PES ANOR DOLOR XER SOM N CONS INS NAU TOS

Frequency and degree of control of 10 symptoms at “Morir de Càncer” XGB et al, 1996
 SYMPTOM HOSPICE NURSES SELECTING
THE SYMPTOM (%)
Agitation 45

Pain 40

Shortness of 34
breath
Confusion 33
Symptoms
difficult to Pressure ulcers 27

manage Nausea 26

Fatigue 25

Constipation 24

Depression 22

Anxiety 21

From Johnson DC, Kassner CT, Houser J, Kutner JS. Barriers to effective symptom management in
hospice. J Pain Symptom Manage 2005;29:69-79.
HOW DO YOU FEEL WHEN YOU SUFFER?
 CONSEQUENCES OF TERMINAL SITUATION

Suffering, difficult experience, impact,

isolation, multiple crisis

• High need and high demand of care

and services
• Frequent emergencies and
admissions
• Frequent ethical decisions
THE MODEL OF NEEDS
 CHARACTERISTICS OF NEEDS

Multidimensional
Evolutive Crisis
Ethical dilemmas
 MODEL OF NEEDS
From Saunders to Ferris….

Frank D. Ferris, MD is the Director,

International Programs, San Diego Hospice &
Palliative Care, a teaching affiliate of the
University of California, San Diego, School of
Medicine.
1.ILLNESS
2. PHYSICAL 3. PSYCHOLOGICAL
MANAGEMENT

8. LOSS,
BEREAVEMENT
PATIENT & FAMILY 4. SOCIAL

7. CARE
AT THE END OF LIFE /
DEATH
MANEGEMENT
6. PRACTICAL 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)
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)
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

8. LOSS, BEREAVEMENT 4. SOCIAL

•Loss •Values, cultural, beliefs, practices
•Pain (for example, chronic acute, PATIENT & FAMILY •Relations, roles with the family, friends,
anticipatory) Characteristics community
•Bereavement planning Demographic (age, sex, race, contact •Isolation, abandonment, reconciliation
•Mourning information) •Safe, comforting environment
Culture (ethnic, language, nurture) •Privacy, intimacy
Personal values, beliefs, practices, •Routines, rituals, leisure, vocations
7. CARE AT THE END OF LIFE/DEATH strengths •Financial resources, expenses
MANAGEMENT Development status, education, •Legal (powers of attorney for businesses,
•End of life (businesses ending, relationships alphabetization health attention, advanced directives, last
closing, to say goodbye) Disabilities desire/testament beneficiaries)
•Delivery of gifts (objects, money, organs,
thoughts)
•Creation of legacy
6. PRACTICAL 5.SPIRITUAL
•Preparation for the awaited death
•Everyday activities (personal care, home •Significance, value
•Anticipation changes in agony
work) •Existential, transcendental
•Rituals
•Dependents, pets •Values, beliefs, practices, affinities
•Certification
•Access to telephone, transport •Spiritual advisors, rituals
•Care of agony
•Care •Symbols, icons
•Funerals
 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
THE MODEL OF INTERVENTION
THE SQUARE OF CARE
THE PROCESS OF CARE
Needs patients and 1. Assessment 2. Sharing information, 4. Plan of care 5. Care activities 7. Measure
families ethical decision-making, results, review,
define aims update

Disease management

Physical

Emotional

Spiritual

Ethical

Family

Social

Practical

End of Life

Grief and loss

“The square of care” (Modified from Ferris F, XGB, Furst CJ, Connor S, JPSM, 2007)
 Therapeutic Relationship

Time
Presentation Diagnosis Discharge /
Death

“The square of care”

(Ferris F, 2007)
 6. Confirm
• Understanding 1. Evaluation
• Satisfaction • History of active and
• Complexity potential issues,
• Stress opportunities for growth,
• Concerns, other issues, expectations, needs, hopes,
questions fears
• Ability to participate in the • Examination (assessment
plan of care scales, physical examination,
laboratory, radiology,
procedures)

5. Do Care
• Care team composition,
leadership,coordination,
facilitation, education,
training, support
• Consultation
• Setting of care
• Essential services
• Support network
• Therapy delivery
• Process
• Storage, handling,
disposal
• Infection control
• Errors
4. Plan care
3. Decisions
• Setting of care 2. Share information
• Capacity
• Process to negotiate • Confidentiality limits
• Goals for care
and develop plan of • Desire and readiness
• Issue prioritization
care that addresses for information
• Therapeutic options
issues and
• Treatment choices, • Process for sharing
opportunities, delivers
consent information
chosen therapies
• Translation
• Includes plan for • Withholding,
withdrawing therapy,, • Reactions to
dependents, backup
hastened death information
coverage, respite care,
• Surrogate decision- • Understanding
emergencies
making • Desire for additional
• Discharge planning
• Advance directives information
• Bereavement care
• Conflict resolution
 ETHICS , PALLIATIVE, HOSPICE,
ANASTETIC NURSE
• Challenges facing us
• Ethics and ethical principles in health care
• Cultural/spiritual considerations
• Importance of excellent communication
• Hydration at the end of life
• Withdrawing/withholding treatment
• Advance Care Planning Quality of life
• Value of life
• Meaning of life

It’s not death itself that people fear – rather the manner of their
dying
“An ethical problem is a situation involving
conflict about the right thing to do. Any
health care decision that involves
competing values is an ethical problem”
Cameron, 2002, p 637
 Death is nothing new

• • The fact we die is nothing new

• • Illness and death have always been part of human experience
• • However how we get sick today and how our society responds to
sickness has changed radically
• • As the nature of illness has changed … so too has dying
• • Palliative care is trying to respond to these changes and uses the
tools developed by modern medicine to meet the needs of the
dying to relieve suffering and enhance quality of life
• • Dying is an important phase of life, one in which people have the
right to expect quality of life to ensure a death with dignity occurs
 Ethical issues in aged care
• The older person, and those caring for them at the end-of-
life face many complex issues surrounding physical,
psychological and spiritual needs. Challenging issues such
as:
• • Ensuring informed consent
• • Determining capacity
• • Ensuring confidentiality
• • Withdrawing/withholding life sustaining treatments
• • Continuing futile treatments
• •Utilising ethical guidelines means we can help the patient
and family make decisions about the care they would like
 Ethical issues in context

• • Ethical issues are raised by virtually all clinical decisions

we make – we make them on a daily basis and most of the
time don’t realise it
• • Clinical decisions are often made not knowing in advance
whether the decision will prove to be right or wrong
• • Knowledge of abstract principles that follow is helpful but
difficult ethical issues cannot be resolved simply by
applying principles
• • Patients, families and health workers often hold different
values and they may come into conflict requiring creative
resolution
 Responding to Ethical Issues in
Palliative Care

• Ethical dilemmas on macro and micro levels

emerge daily in palliative care
Prince-Paul & Daly, 2010

66
 Responding to Ethical Issues in
Palliative Care

• Changes in social/family systems have

added to complexity of end-of-
life/palliative care
• Palliative care staff help patients make
fully informed decisions

67
 Ethics Competencies

• Palliative care staff play a critical role in

legal/ethical issues
• Acquisition of knowledge, skill and core
competencies
• Identification, evaluation, resolution of ethical
issues

68
 Ethical Principles
(From a Western Perspective)

• Autonomy
• Beneficence
• Nonmaleficence
• Justice

69
Issues of Communication and Shared
Decision Making

• Disclosure
• Confidentiality

70
Issues of Communication and Shared
Decision Making
(from a Western Perspective)

• Informed Consent
• Decisional Capacity

71
 Issues of Communication and Shared
Decision Making (cont.)

• Decision making capacity for marginalized

groups
– Patients with dementia/mental illness
– Patients with developmental disabilities
– Prisoners

72
 Preventive Ethics

• Health professionals should focus efforts on

preventing the occurrence of conflicts
• Early identification of issues
• Knowledge of the natural history of many
illnesses
Hameric & Delgado, 2005

73
 Preventative Ethics (cont.)

• Understanding of patient/family wishes

• Cultural and spiritual assessment
• Communication skills

74
Answering the Unanswerable
Questions

75
 Facilitating Ethical and Legal Practice

The 4 Box Method

Clinical Patient
Indications Preferences

Quality of Contextual
Life Features

Jonsen et al., 2006

76
 Clinical Indications

• Indications for and against the intervention

• Reflects the goals of care
• What are common ethical dilemmas in your
culture?

77
 Patient Preferences

• Cultural, ethnic and age related differences

must be taken into consideration.

78
 Quality of Life

• Evaluation of prior quality of life

• Expected quality of life with and without
treatment

79
 Contextual Features

• Social, legal, economic and institutional

circumstances
• Context features must be determined and
assessed

80
 Conclusion

• Address values and understanding of

needs
• Advocate for patient/family rights
• Work closely with other disciplines

81
Collaboration 82
 Culture Defined

• A system of shared symbols

• Provides security, integrity, belonging
• Constantly evolving

83
 Cultural Context

• Making meaning of illness

• Not limited to race or ethnicity
• Health disparities

84
 Cultural Competence

• Components
• Importance of interdisciplinary
approach

85
 Cultural Assessment

• Cultural attributes
• Variation within groups

86
A Mother's Touch 87
 Components within Culture

• Ethnicity
• Race
• Gender
• Age
• Religion and spirituality
• Sexual orientation

88
Fathers Watch 89
Components within Culture (cont.)

• Differing abilities
• Financial status
• Employment
• Education level
• Cause of death

90
 Components of Cultural Assessment

• Patient/family/community
– Birthplace
– Ethnic identity, community
– Decision making
– Language and communication

91
 Components of Cultural Assessment
(cont.)

• Religion
• Food preferences/prohibitions
• Economic situation
• Health beliefs regarding death, grief,
pain, traditional therapies, care of the
body

92
 Self Assessment of Culture

• Self assessment
• Cultural beliefs of co-workers

93
Reaching Out 94
 Cultural Considerations of
Communication

• Use of interpreters
• Conversation style
• Personal space
• Eye contact

95
 Cultural Considerations of
Communication (cont.)

• Touch
• Time orientation
• View of healthcare professionals
• Learning styles

96
 Role of the Family

• Who makes decisions?

• Who is included in discussions?
• Is full disclosure acceptable?

97
 Cultural Influences on
Decision Making

• Beliefs about autonomy and other values

differ
• Disclosure of diagnosis and prognosis
• Ascertain desire for disclosure

98
 Language Used at the
End of Life

• "Discontinuation"
• "DNR"
• "Withdrawing/withholding"

99
 When Cultures Clash

• Clashes occur
• Assess your reactions
• Never lie
• Offer information
• Use interpreters

100
 Conclusion

• Culture is a major influence on end-

of-life care
• Self-assessment of culture
• Many dimensions of culture
• Culturally sensitive care
• Interdisciplinary care

101
Caring for the Body and Soul 102
Summary
 Summary

• Appropriately trained doctors must see sick

patients in a timely manner

• The systems of care need to be overhauled to

ensure that emergency patients get a uniformly
high standard of care
 Summary

• Communication, documentation and handover

must improve

• Care of dying patients should be better planned

and coordinated across social, primary and
secondary health care environments