ETHICAL ISSUES IN

PALLATIVE CARE
DR HENOK ISRAEL
 Ethics
 ‘Ethics apply to all professional care but
assume greater importance when caring for
people with life-threatening illnesses.’ APCA
 ‘Ethical issues in palliative care centre on

decisions that ensure our care will be guided by

moral values that will enable us to satisfy the
criteria for a peaceful and dignified death’.
(Burera et al. 2004)
Ethical principles
 Autonomy (patients should be informed and involved in
decision-making),
 Beneficence (do good),
 Non-maleficence (do no harm),
 Justice (balancing the needs of individuals with those of
society) .
Respect for Autonomy
 Respect for autonomy acknowledges each
patient’s right to self-determination, without
prejudice.
 It recognises the right and ability of an

individual to make decisions for themselves,

based on their own value system, beliefs and
life-span.
What does that mean?
 Informed consent
 Correct Information
 Right to decide
 Health care provide honest and complete

information
Beneficence
 Beneficence means the production of
benefit, doing good and always acting in
the best interests of the patient.
 This requires that the health care team

prevents or removes harm, while doing or

promoting good.
 It is the most commonly used principle in

the application of care.

What does this mean?
 Whatever is done or said must be for the patient’s
good
 Beneficence includes being honest with patients,

which is nearly all circumstances will be to the

patient’s benefit
 Patients should not be subjected to unnecessary

medical investigations or therapies

 Beneficence applies not only to physical good but

also to psychological, social and existential.

Non-Maleficence
 Non- maleficence means not being
malicious; not doing harm.
 It supposes that ‘one ought not to

inflict harm deliberately’.

What does this mean?
 Whatever is done or said must not harm the
patient, physically or psychologically.

 Thepotential benefits must be weighed against

possible adverse effects.
Justice
 Justice relates to fairness in the application of care.
 It implies that patients receive care to which they are

entitled medically and legally.

 Justice can be translated into ‘give to each equally’,

‘to each according to need’ or ‘to each his due’.

 This means that care provision should not be based

on wealth, class, creed or colour.

This means?
 Endeavour to maintain the dignity of the patient, their
caregivers and family.
 Work with the strengths and limitations of the patient and
their caregiver(s) and family to empower them in
managing their own situation.
 Act with compassion towards the patient and their
caregivers and family.
 Consider equity in the accessibility of services
 Advocate on behalf of the expressed wishes of patients,
their caregivers, families and communities.
 Are accountable to patient, their caregivers, families and
the community.
METHODOLOGY AND SKILLS ASPECTS

 Communication
 Respectful, people-centered care
 Essential needs care: dignity, spirituality, hope,

autonomy
 Advance care planning
 Identification of values, preferences, and goals for

care
 Shared care and decision-making: patients, families,

teams
COMMUNICATION
 Open and clear communication is a necessary
condition for good ethical palliative care
practice .
 Many challenges arise between patients, their

families, and health care professionals, which

need to be handled with skill and sensitivity
 These challenges include informing
-patient and family about diagnosis and
prognosis,
- breaking bad news,
- making difficult decisions about treatment and
discontinuation of treatment, resuscitation,
administration of nutrition and hydration, and so
forth .
A systematic approach to giving bad news as follows

• Setting the scene (quiet location, phones/pagers off,

sitting at eye level) .
• Involve family and other team members as appropriate .

• Elicit the patient’s perception . What do you already

understand about you situation/diagnosis?
• Ask for the patient’s preferences regarding information .
“How much do you want to know, a lot of detail, or big
picture?
If you don’t want to know, who should we talk to about
decision making?
• Give the information starting with statements like “I wish I had
better news .”
• Keep statements simple and clear, without medical jargon .
• Pause and allow time for patient response and reaction .
• Acknowledge and respond to the patient’s emotional

reactions .
• If no reaction, ask what the patient is thinking or feeling now .

• Arrange for follow up . “This is a lot to think about .

• Let’s meet again soon to talk more .” “Here are some things we

can do moving forward .” Never say: “There’s nothing more I

can do .”
RESPECTFUL, PEOPLE-CENTRED
CARE
 Putting people at the heart of the health care
experience .
 focusing on a true and lasting integration of services

offered to them.
 This strategy presents a compelling vision of a future in
which all people have access to health services that are
provided in a way that responds to their preferences,
are coordinated around their needs, and are safe,
effective, timely, efficient and of acceptable quality
ESSENTIAL NEEDS CARE:

 Dignity,
 Spirituality,
 Hope,
 Autonomy
ADVANCE CARE PLANNING
 Advance care planning involves learning about the
types of health care decisions that might need to be
made, considering those decisions ahead of time,
 An advance directive is a legal document that goes into

effect only if you are incapacitated and unable to speak

for yourself .
IDENTIFICATION OF VALUES, PREFERENCES,
AND GOALS FOR CARE
 Clinicians can help define goals of care by
asking questions about patients’ values and
preferences for care .
 Values can help the person to make decisions

about treatment and care options .

 How to know patients’ values?
 What is most important to you now?”
 “What do you enjoy the most now?”
 “What concerns you most about your

disease?”
 “What are you expecting to happen in the

coming weeks or months?”

 “What have you seen in others you have

known with the same disease?”

 Clarifying goals for care with the patient
involves an on-going discussion of the relative
risks, benefits and alternatives to the various
treatment options .
 Initial discussion of goals of care will

generate an on-going dialogue about the

person’s clinical situation and response to
treatment .
SHARED CARE AND DECISION-MAKING:

 A fundamental principle of palliative care is that the

patient and their family are the unit of care .
 By family, we mean more than those related by blood

or marriage .
 Shared care means care that is the shared responsibility

of a group of professionals along with the patient and

family .
 DECISION-MAKING

 Place of care
 Transfers between services,
 Information and communication
PLACE OF CARE
 Home
 Hospice facility
 As with other such decisions, helping the person to

make this choice, when options are available, will

depend on values and goals .
TRANSFERS BETWEEN SETTINGS
 Acute care facilities often limit the time patients can
remain hospitalized to make use of scarce resources .
 To ensure safe transitions between settings, palliative

care standards usually require that there be a transfer

summary and continuity in the care planning between
settings .
INFORMATION AND COMMUNICATION
 A person with an advanced chronic condition is entitled
to all available information about their changing health
condition and also should be allowed to decide how
much information to be given .
 Some people prefer to have every detail of the situation

while others prefer more general information or even to

appoint someone else to be the recipient .
DECISION MAKING IN END-OF-LIFE
CARE
 Withdrawal or refusal of specific
treatment,
 Nutrition and hydration,
 Sedation, desire for hastened death,
 Resuscitation
WITHDRAWAL OR REFUSAL OF
SPECIFIC TREATMENT
 The right to refuse medical interventions is now well
established .
 The right to access specific medical treatment has more
potential areas of conflict .
 In many countries treatment may only be accessible for those
with the resources to pay for it .
 The right to palliative care has been asserted but less than 10%
of the need is being met .
 In end-of-life care, the most common issue is refusal of
treatment .
 Ethically there is no distinction made between withdrawal and
refusal of any medical treatment .
NUTRITION AND HYDRATION
 The literature on withholding nutrition
and especially hydration has demonstrated
that decease in intake is a normal part of
the dying process and does not need to
result in suffering as long as good mouth
care is maintained
 Recent literature also has shown that the

use of feeding tubes in nursing home

patients does not significantly improve
survival .
SEDATION
 When all attempts to relieve suffering have been
unsuccessful, the option to sedate a patient can be
considered .
 Therapeutic (or palliative) sedation in the context of

palliative medicine is the monitored use of medications

intended to induce a state of decreased or absent
awareness (unconsciousness) in order to relieve the
burden of otherwise intractable suffering in a manner
that is ethically acceptable to the patient, family, and
health care providers
RESUSCITATION AND LIFE SUPPORT
 Cardio-pulmonary resuscitation (CPR) was developed to
increase survival in acutely ill patients . Patients with
advanced, chronic life- limiting conditions rarely benefit
from CPR and ongoing life support .
 The use of CPR in these cases more often results in a
prolongation of the dying process if even partially successful
and increased suffering from trauma .
 As with all other medical interventions the patient has a
right to request that CPR not be undertaken . Unfortunately,
in the absence of an advance directive and do–not-resuscitate
order, the default in medical institutions and emergency care
is to initiate CPR
DESIRE FOR HASTENED DEATH
 Patients may ask their health care providers to hasten
their death.
 In palliative care this is often a cry for help and the best

response is to try to understand what is driving the

patient to want to prematurely end their life and to
remedy the problem .
 In some cases, it may not be possible to relieve the

suffering or the patient may have such a high need for

control that they want to determine their time of death .
 Palliative care providers have the dual ethical
obligation to support patient autonomy while at the
same time doing no harm .
 In some jurisdictions it may be legal to provide

assistance in hastening death .

 While it has been the case that assisted suicide and

euthanasia are not considered part of palliative care

practice, nonetheless it is essential to continue to
support and not to abandon patients who intend to
hasten their deaths .
DECISION-MAKING IN PATIENTS WITH
LIMITED COGNITIVE FUNCTION:
 Patients with cognitive deficits including delirium and
dementias pose additional ethical burdens on palliative
care providers .
 Determining when a patient is no longer able to make

health care decisions can be challenging as these

deficits may develop gradually .
 Therefore, it is especially important to both document
patient wishes regarding the end of life and to ensure
that a legal surrogate is appointed to make decisions
when the patient is unable to .
 In most places family members may be required to

make decisions for these patients .

CULTURAL, REGIONAL, AND
SETTING ISSUES
 Ethical issues in palliative care may be strongly
influenced by the setting where care is delivered .
 Local customs and cultural dictates can influence how

care is delivered, who and how decisions are made

about treatments, and what settings care is provided in .
 In addition, what happens at the time of death, handling
and preparation of the body, rituals performed, funerary
practices, and grieving are all heavily influenced by
culture and local custom .
 It is essential that palliative care workers are aware of

and sensitive to these norms for all cultures in the areas

where palliative care services are provided .
Discussion
What are the ethical palliative care issues
in your area?
 Q1, when the patient’s wish is in conflict with
beneficence or non-maleficence as perceived by the
treating doctor. For example if the patient demands an
intervention which in the doctor’s perception is not
beneficial or is harmful, how the doctor can proceed?
Discussion ( 5 minutes)
 The doctor is not bound to follow the patient’s wish. In
such a dilemma, the doctor should offer to pass on
treatment to another doctor of the patient’s choice.
 Q2, Do you allow euthanasia in palliative care?
( discussion)(3minutes)
 If the patient wishes for something illegal, as for
example euthanasia, naturally it cannot be granted.
 Q3, Mr. x is diagnosed with end stage prostatic cancer
and the family is not welling to tell him his diagnosis.
How can you proceed?( discussion)(3 minutes)
 Social factors may cause conflict between autonomy of the
patient and the family’s wish. This is a common scenario.
In an effort to protect the patient, the family often hides the
diagnosis and/or the prognosis from the patient.
 While ethically the patient has the right to know, blind
exercise of autonomy by the doctor and disclosure of
diagnosis to the patient against the wishes of the family
might very well mean that the doctor or the team will lose
the chance to help the patient.
 It is next to impossible to give proper treatment to a patient
without the family’s cooperation.
 A rational approach would be to spend time with the
family, understand their perspective and concerns (after
all, palliative care is aimed at improving quality of life
not only are the patient, but also of the family) and help
them also to do the best for the patient. This may take
time; but that time is well spent.
References
 African Palliative Care Association. Beating Pain: a pocketguide for pain management in
Africa, 2nd Ed. [Internet]. 2012. Available from:
http://www.africanpalliativecare.org/images/stories/pdf/beating_pain.pdf
 African Palliative Care Association. Using opioids to manage pain: a pocket guide for
health professionals in Africa [Internet]. 2010. Available from:
http://www.africanpalliativecare.org/images/stories/pdf/using_opiods.pdf
 Amery J, editor. Children’s Palliative Care in Africa [Internet]. 2009. Available from:
http://www.icpcn.org/wp-content/uploads/2013/08/Childrens-Palliative-Care-in-
Africa-Full-Text.pdf
 Kopf A, Patel N, editors. Guide to Pain Management in Low-Resource Settings [Internet].
2010. Available from:
http://www.iasp-pain.org/files/Content/ContentFolders/Publications2/FreeBooks/
Guide_to_Pain_Management_in_Low-Resource_Settings.pdf
 The Palliative Care Association of Uganda and the Uganda Ministry of Health.
Introductory Palliative Care Course for Healthcare Professionals. 2013.
 World Health Organization. WHO guidelines on the pharmacological treatment of
persisting pain in children with medical illnesses [Internet]. 2012. Available from:
http://www.who.int/medicines/areas/quality_safety/guide_perspainchild/en/

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Thank you