ETHICAL ISSUES

IN PALLIATIVE CARE

13th APHC, Surabaya-Indonesia

Maria A. Witjaksono
Dharmais National Cancer Center
 INTRODUCTION
 Every single patient deserves and has rights for the best
care until the end of life

 Palliative care aims to relieve suffering and to improve

quality of life

 Ethical dilemmas and issues potentially arise in

palliative care

 Palliative care professionals should have an

understanding about medical ethics, awareness of
potential ethical issues and strategy to deal with in a
complex decision making
CASE STUDY

You have a referral from an oncologist who asks

you for a palliative care intervention for Mrs. A.
52 years old with breast cancer who complained
of SOB and anxiety. The radiology work up shows
a multiple lesions in her both lung suggested lung
metastases and pleural effusion. You plan to give
her chemotherapy
Her daughter gives you a sign of “please do not
tell mom”. “She will get distressed…I will get
married in six months time”
MEDICAL ETHICS
Definition:

Is a system of moral principles that apply values to

the practice of clinical medicine and in scientific
research

Is a moral obligation in medical practice (Duncan et al,

1992)

…that professionals can refer to in the case of any

confusion, disagreement or conflict
MEDICAL ETHICS
Aims:
• To respect the dignity of each patient in any
condition including at the end of life

• To support the patients and their families through

decisions that are prognostically uncertain

• To achieve a qualified medical services

Classic Version of the Hippocratic Oath
I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making
them my witnesses, that I will fulfil according to my ability and judgment this oath and this covenant:
To hold him who has taught me this art as equal to my parents and to live my life in partnership with him,
and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers
in male lineage and to teach them this art - if they desire to learn it - without fee and covenant; to give a
share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has
instructed me and to pupils who have signed the covenant and have taken an oath according to the medical
law, but no one else.
I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep
them from harm and injustice.
I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect.
Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my
art.
I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are
engaged in this work.
Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional
injustice, of all mischief and in particular of sexual relations with both female and male persons, be they
free or slaves.
What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life
of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to
be spoken about.
If I fulfil this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with
fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be
my lot.
EVOLUTION OF MEDICAL ETHICS

• Hippocrates's Oath :
commitment to patient’s “well-being”,
paternalistic

• + the concept of “Human Right”

Decision making is the patient’s autonomy
based on the given information & his
understanding

“I will respect the autonomy and dignity of my

patient” (2017)
PRINCIPLES OF MEDICAL ETHICS
• Respect for persons self
Autonomy determination & wishes
Beneficence & • Do good, do not harm, benefits
Non- versus risks” cost
Maleficence
• Physician’s decision is made fairly
Justice and impartially

• Faithfulness to physician’s duties

Fidelity & obligations

Utility • Good result, maximum benefit

dignity, truthfulness/honesty
PRINCIPLE OF PALLIATIVE CARE
 Affirm life and regards dying as normal process
 Aims to neither hasten nor postpone death
 Gives the patient a central role in decision making
 Provide relief from distressing symptoms
 Integrates the psychological, emotional, spiritual and social
aspects of care for the patients, the family and carers in a
culturally sensitive manner
 Avoids futile interventions
 Offers a support system to help patients live as actively as
possible until death
 Offers a support system to help the family and carers coping
during the patient’s illness and after the patient’s death.
 Uses a team approach to address the needs of patients and their
care givers
ETHICAL ISSUES
 Is more than an issue of making a difficult choice

 Problems in professional practice in which there is conflict

about the morally right action to take or in which the
duties and obligations of health care professionals are
unclear. What should I do?

 Ethical issues arise when there is dilemma or

disagreement among health care professionals, patient,
family

 Disagreement often concerns sensitive and personal issues

such as beliefs, values, patient’s best interest,
communication, decision making
DILEMMA IN DECISION MAKING IN PC

 Is the diagnostic procedure appropriate ?

 Is the treatment beneficial or harmful?

 Benefit and risk shown in a “clinical evidence-

based” may be not applicable
 ETHICAL ISSUES IN PALLIATIVE CARE

Disclosure
Disclosure&&truth
truthtelling

telling
Advance
AdvanceCare
CarePlanning

Planning
Request
Requestfor
forunproven
unprovenororfutile
futileinterventions

interventions
Limitation
Limitationofoftreatment:
treatment:Withdrawal
Withdrawal&&

withholding
withholdingofoftreatment,
treatment,hydration
hydration&&
nutrition
nutrition
 Option of last resort: Request to hasten death :
 Option of last resort: Request to hasten death :
euthanasia,
euthanasia, let
letme
medie,
die,letting
lettingdie
die
COMMUNICATION PROBLEMS:

 Family pressure for concealing the truth: part of

the duty vs different level of importance of
autonomy among cultures
 Misperception of withholding information to
maintain hope. What is hope in palliative care?
 Primary physician do not tell the prognosis or tend
to bias optimistically
 When and how to tell about impending death
 How to proceed palliative care refusal
 What if the patient’s wishes could not be carried
out due to practical obstacles
DISCLOSURE AND TRUTH TELLING
 Telling the truth aims to respect patient’s
autonomy
 Rights to know and not to know
 No predictor on the patients need of information
(age, gender, educational background)
 Most patients want to know the truth
 Adequate information acceptance decision
making adaptation/adjustment
 Step by step individual approach in breaking the
bad news
 Holding the information potentially increase
anxiety and fear
WHAT TO DO

 Ask the patient what they need to know and

how much to know
 Respect the family by providing a family
meeting: the benefit of telling the truth,
how to disclose the truth
SHARED DECISION MAKING

 Active dialogue and discussion between the

clinician and the patient, who have different
but equally valuable perspectives with specific
role of each
 Provide information
 Gain understanding the patient’s values and goal
 Make recommendation based on medical expertise,
experience, patient’s values and goal

 Leaving patients to make decision on their own

to respect autonomy is not recommended
SURROGATE DECISION MAKER
 In the event of incapacity

 Surrogate decision maker is to protect

autonomy, assisting in the value, goal and
preference of the patient

 According to AD or the next of kin, the person

who has a strongest genetic and/emotional ties
to the patient
ADVANCED CARE PLANNING (ACP)

 Is a process by which patients, together with their

and health care providers consider their values and
goals and articulate references for future care

 Advance directives formulize these preference and

include living will, health care proxies, DNAR

 It is required when the patient is incompetent to

communicate and express their wish and needs
AIMS OF ACP
 To create an opportunity to explore their own values,
belief and attitudes regarding QoL and medical
intervention particularly at the end of life
 To clarify their values and to consider these affect their
feelings about care at the end of life
 To learn what they can expect as they face the end of life,
the available options for life-sustaining treatment and
palliative care
 To gain a sense of control over their medical care and their
future; and to gain a sense of control that they will die in
a manner that is consistence to their preferences.
 To believe that the family and the health care professional
will make decisions according to their values and goals
Tulsky, J.A, 2016
AIMS:
Patient’s may wish
 to relieve the family’s burden in decision
making
 to protect loved ones from having to watch a
drawn-out dying process
 to prepare his own death
 to reflect deeply about his life, meaning and
purpose of life
 to contemplate the relationship with loved
ones, the unfinished business, future disability
and dependency
BENEFITS OF ACP

 ACP is a groundwork in making a specific plan

 To reassure patients that their wishes will be
respected
 To reduce potential conflict among families,
between family and health professionals
 To decrease anxiety, depression and stress
DILEMMA ON ACP AMONG PHYSICIANS
 Time constraint
 Lack of skills
 Fear of giving impression of giving up or
immediate death

Facts
 Patients want to discuss ACP earlier
 ACP should be offered not to be forced
 Document must be good and accessible when
needed
REQUEST FOR UNPROVEN OR INEFFECTIVE TREATMENT, FACTS:

 It is difficult to deal with patients who ask for “do everything”,

“wait for miracle” “why you do nothing”

 Optimistic patients take invasive treatment.

If no discussion about death, they will take the invasive
treatment before die

 Desperate patients may seek an ineffective or unproven treatment

 Family pressure for invasive treatment due to difficulty coping

with impending death

 Doctor-patient/family conflict: feel of disrespected vs

abandonment
 Has no courage to discuss about death as fear
of patient’s distress

 Offering more therapy instead of engaging with

emotional state

 Doctors give false hope: Doctors convey overly

optimistic prognosis

 More conflict arise when doctor push the

patients to understand the futile treatment
and not to understand his sadness
DEALING WITH UNREALISTIC HOPE
 Health care professionals have no duty to correct
unrealistic hope
 If the unrealistic hope interfere his appropriate plan
and behavior, hcp can provide an emphatic
reflective presence
 Support the patients to gather and draw strength
from their existing resources

 “Saya berharap saya mempunyai obat yang lebih

efektif untuk saya tawarkan ke bapak”

 Hope for the best but prepare for the worst

LIMITATION OF TREATMENT
TIDAK DIAPA APAIN

 It is not easy to accept the limitation of treatment

 Hydration and nutrition: IV, NGT
 Antibiotics: consider the benefit to reduce
symptoms versus burden of needles, side effects,
cost
 Can the fever and cough be relieved with
antipyretics and antitussive
WITHHOLDING & WITHDRAWING LIFE-
SUSTAINING TREATMENT (LST)
Definition:
 Any treatment that serves to prolong life without
reversing the underlying medical condition
 includes but is not limited to CPR, mechanical
ventilation, hemodialysis, left ventricular assist
devices, antibiotics, artificial hydration and
nutrition (anonymous, 1992)
 Withholding LST: a deliberate decision not to
initiate treatment aims to prolonging life
 Withdrawing LST: removing a medical intervention
without which life is not expected to continue due
to the patient’s underlying disease.
PALLIATIVE CARE:

 Expectation: the patient will die due to the

natural progression of the underlying disease

 Euthanasia or physician-assisted dying

acts intended to hasten death to prevent or
alleviate suffering
FUTILITY

Futile:
 Not to safe LIFE
 Not to prolong life
 Not to relive symptoms or suffering
 Not to improve quality of life

 There is no obligation to perform futile treatment

Considerations:
 thepurpose of the management
 Beneficial or harmful?
 Seek a second opinion
 Consult with the ethical committee
CARDIOPULMONARY RESUSCITATION

 CPR is primary for people with cardio-respiratory

problem
 In the presence of serious illness, the outcome of
CPC is universally poor
 CPR should be discussed with the patients and the
family before or at the time of entry to palliative
care services
 Discuss the benefit versus the risks
NUTRITION AND HYDRATION
 NGT doesn’t show a significant benefit in terminally
ill patients

 Artificial hydration is debatable

Recent studies: hypodermoclysis relieves
symptoms without significant burden
Suggested to apply with evaluation

 Should be primarily for the benefits of the patients

not the family
 The emotional needs and ethical views of the
caregiver must be considered
OPTION OF LAST RESORT

 Barrier to symptomatic treatment at the end of

life is fear of hastening death

 Doctors must continue the appropriate

treatment with adjusting dose, despite the
potential side effects

 Physician-assisted suicide is illegal

DOUBLE EFFECT
 Moral dilemma: justification of actions that have
well known, unavoidable bad side effects

 It requires that:
 The nature of the act must be good or at least morally
natural
 The harmful effect must be foreseen but not intended
 The harmful effect must not be away of producing the
good effect
 The good effect must outweigh the harmful effect
 EUTHANASIA : REASONS AND RESPONSES
Unrelieved pain and physical symptoms
- should not occur, given optimal multidisciplinary palliative care
Severe anxiety and depression
- should be controlled, given optimal multidisciplinary palliative care
Intolerable suffering, existential distress
- should be controlled, given appropriate multidisciplinary care
Carer fatigue
- is preventable
Autonomy and self-determination
- the existence of a right to request and receive euthanasia is controversial
Iatrogenic – the ‘nothing more can be done’ syndrome
- would not occur if patient were referred to a palliative care service
- requires professional education
MANAGING DIFFERENCES

 Resolving dilemma is different from solving a problem

 Ethical issues are often problems of communication:

created and solved by communication

 Many core values held in common and the attributes of

good and compassionate care usually able to solve the
ethical issues

 There are no “right answers, each person may need to

compromise a little to get to an agreed common
direction
 Clinician factors
Disease Factors

• Prognosis • Education

Patients Factors
• Aggressiveness
• Curability • Performance • Experience
• Mutation status status • Local resources
• Comorbidity
• Patient
preference
• Logistics
• Social/family
support

Factors modulating the risks

and benefits

Benefits
RISKS Survival
Adverse effects, QOL
Energy and time Functional gain
Cost Hope
Evidence-based medicine

Hui & Bruerra, 2014

CLINICAL CONDITION

DECISION MAKING
EVIDENCE-BASED

ETHICS
SYSTEMATIZATION OF THE ETHICAL ANALYSIS OF CLINICAL
CASES

1. Identify the ethical problem and formulate the

right question
2. Refer to the ethical values or principles involved
3. Collect and analyze the “ethically relevant”
clinical information
4. Inquire the patients’ values and involve them in
decision making
5. Review alternative courses of action
6. Formulate an ethical solution
7. Consider the best way of implementing the
solution
8. Reflect on the cases’ lessons
Taboada P, 2016
1. Penghentian terapi bantuan hidup (with-drawing life
supports) adalah menghentikan sebagian atau semua
terapi bantuan hidup yang sudah diberikan pada pasien.
2. Penundaan terapi bantuan hidup (with-holding life
supports) adalah menunda pemberian terapi bantuan
hidup baru atau lanjutan tanpa menghentikan terapi
bantuan hidup yang sedang berjalan.
3. Euthanasia adalah kematian yang disebabkan karena
pengobatan yang diberikan oleh dokter dengan niat
untuk mempercepat kematian.
PERMENKES NO. 17 TAHUN 2014 TENTANG
PENENTUAN KRITERIA MATI
Pasal 14
1. Pada pasien yang berada dalam kedaan yang tidak dapat
disembuhkan akibat penyakit yang dideritanya (terminal state) dan
tindakan kedokteran sudah sia-sia (futile) dapat dilakukan
penghentian atau penundaan terapi bantuan hidup.
2. Kebijakan mengenai kriteria keadaan pasien yang terminal state dan
tindakan kedokteran yang sudah sia-sia (futile) ditetapkan oleh
direktur atau Kepala Rumah Sakit.
3. Keputusan untuk menghentikan atau menunda terapi bantuan hidup
tindakan kedokteran terhadap pasien sebagaimana dimaksud pada
ayat (1) dilakukan oleh tim dokter yang menangani pasien setelah
berkonsultasi dengan tim dokter yang ditunjuk oleh Komite Medik
atau Komite Etik.
4. Rencana tindakan penghentian atau penundaan terapi bantuan
hidup harus diinformasikan dan memperoleh persetujuan dari
keluarga pasien atau yang mewakili pasien.
 PERMENKES NO. 17 TAHUN 2014 TENTANG
PENENTUAN KRITERIA MATI
Pasal 15
1. Keluarga pasien dapat meminta dokter untuk melakukan penghentian atau
penundaan terapi bantuan hidup atau meminta menilai keadaan pasien untuk
penghentian atau penundaan terapi bantuan hidup.
2. Keputusan untuk menghentikan atau menunda terapi bantuan hidup tindakan
kedokteran terhadap pasien sebagaimana dimaksud pada ayat (1) dilakukan oleh
tim dokter yang menangani pasien setelah berkonsultasi dengan tim dokter yang
ditunjuk oleh Komite Medik atau Komite Etik.
3. Dikecualikan dari ketentuan sebagaimana dimaksud pada ayat (1) dan ayat (2) bila
pasien masih mampu membuat keputusan dan menyatakan keinginannya sendiri.
4. Dalam hal permintaan dinyatakan oleh pasien sebagaimana dimaksud pada ayat
(3), maka permintaan pasien tersebut harus dipenuhi.
5. Dalam hal terjadi ketidaksesuaian antara permintaan keluarga dan rekomendasi
tim yang ditunjuk oleh komite medik atau komite etik, dimana keluarga tetap
meminta penghentian atau penundaan terapi bnatuan hidup, tanggung jawab
hukum ada di pihak keluarga.
UU PRAKTIK KEDOKTERAN PASAL 50
Dokter atau dokter gigi dalam melaksanakan
praktik kedokteran mempunyai hak :
1. Memperoleh perlindungan hukum sepanjang
melaksanakan tugas sesuai dengan standar
profesi dan standar prosedur operasional
2. Memberikan pelayanan medis menurut standar
profesi dan standar prosedur operasional
3. Memperoleh informasi yang lengkap dan jujur
dari pasien atau keluarganya, dan
4. Menerima imbalan jasa
 TAKE HOME MESSAGES
 Patients at the end of life need fundamental moral
attitudes and virtues

 Palliative care identifies, acknowledges, and addresses

the complex ethical issue arising in the care of people
with life threatening disease

 Ethical issues are often problems of communication.

Many core values held in common usually able to solve
the ethical issues by compromising a little to get to an
agreed common direction

 Having communication skills and time are essential to

avoid and to deal with ethical issues
THANK YOU