Ethics, Palliative Care, and Care

at the End of Life

dr. Wiko Wicaksono
Perseptor :
 WHY ETHICS MATTER
• Ethical concerns involve not only the interests
of patients but also the interests of surgeons
and society. Surgeons choose among the
options available to them because they have
particular opinions regarding what would be
good (or bad) for their patients.
• The capacity to choose wisely in such
circumstances is the challenge of surgical
practice
 DEFINITIONS AND OVERVIEW
• Biomedical ethics is the system of analysis and
deliberation dedicated to guiding surgeons
toward the “good” in the practice of surgery
• Four guiding principles:
– Autonomy
– Beneficence
– Nonmaleficence
– Justice
 • respect individuals to choose their own destiny
Autonomi and have a right to make those choices

• requires that proposed actions aim at and

Beneficence achieve something good

• aims at avoiding concrete harm: primum non

Nonmaleficence nocere

• requires fairness where both the benefits and

Justice burdens of a particular action are distributed
equitably
 SPECIFIC ISSUES IN SURGICAL ETHICS

Informed Consent
• Although a relatively recent development, the
doctrine of informed consent is one of the
most widely established tenets of modern
biomedical ethics
• The clinician has made a concerted and
documented effort to involve the patient in
the decision-making process
Four 1. The physician documents that the patient or surrogate
has the capacity to make a medical decision
basic
elements
2. The surgeon discloses to the patient details regarding
of the diagnosis and treatment options sufficiently for the
Informed patient to make an informed choice
Concent 3. The patient demonstrates understanding of the
disclosed information before

4. Authorizing freely a specific treatment plan without

undue influence
• To accomplish these goals, the surgeon needs
to engage in a discussion about :
– the causes and nature of the patient’s disease
– the risks and benefits of available treatment
options
– details regarding what patients can expect after
an operative intervention including possible
outcomes and complications
 The Boundaries of Autonomy: Advance
Directives and Powers of Attorney
• Severe illness and impending death can often render
patients incapable of exercising their autonomy regarding
medical decisions. One approach to these difficult
situations is to make decisions in the “best interests” of
patients
• Advance directives of various forms have been developed
to carry forward into the future the autonomous choices
of competent adults regarding healthcare decisions.
Furthermore, the courts often accept “informal” advance
directives in the form of sworn testimony about
statements the patient made at some time previous to
their illness.
 Withdrawing and Withholding
Life-Sustaining Therapies
• The implementation of various forms of life
support technology raise a number of legal and
ethical concerns about when it is permissible to
withdraw (stopping) or withhold (not starting)
available therapeutic technology
• Withholding or withdrawing of life-sustaining
therapy is ethically justified under the principle
of double effect if the physician’s intent is to
relieve suffering, not to kill the patient.
Important Any and all treatments can be withdrawn. If circumstances
principles justify withdrawal of one therapy (e.g., IV pressors,
antibiotics), they may also justify withdrawal of others
to consider
when Be aware of the symbolic value of continuing some
considering therapies (e.g., nutrition, hydration) even though their role
in palliation is questionable
withdrawal
of life- Before withdrawing life-sustaining therapy, ask the patient
sustaining and family if a spiritual advisor (e.g., pastor, imam, rabbi, or
therapy priest) should be called

Consider requesting an ethics consult

• If the patient (or designated proxy decision maker) does not
agree with withholding or withdrawing life-sustaining
therapy, the surgeon should consider involving consultants
who have participated in the patient’s care, experts in
palliative or end-of-life care or recommend a second
medical opinion
• If the patient/family continues to disagree, the surgeon
should consider assistance from institutional resources such
as the ethics committee and hospital administration
• The surgeon is responsible for continued care of the patient,
which may involve transferring the patient to a surgeon who
is willing to provide the requested intervention
Living Donor Liver Transplantation
• One unique ethical issue that deserves special mention is that of
living donor liver transplantation
• This particular ethical issue emphasizes the importanceof truly
informed consent.
• The donor should be provided with information on local
complication and mortality rates and allowed sufficient time to
consider the risks and benefits without pressure from healthcare
workers
• Furthermore, experienced centers have recommended that living
donors have access to sufficient resources and strong support
from an institutions’ ethics committee, given substantial pressure
exerted by the critical illness of a family member
 PALLIATIVE CARE
General Principles of Palliative Care
• WHO defines palliative care as “an approach
that improves the quality of life of patients and
their families facing the problems associated
with life-threatening 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.”
Indications patients with conditions that are progressive and life-limiting, especially
if characterized by burdensome symptoms, functional decline, and
for progressive cognitive deficits
palliative
care assistance in clarification or reorientation of patient/family goals of care
consultation
in surgical assistance in resolution of ethical dilemmas
practice
situations in which a patient/surrogate declines further invasive or
curative treatments with stated preference for comfort measures only

patients who are expected to die imminently or shortly after hospital

discharge

provision of bereavement support for patient care staff, particularly

after loss of a colleague under care
 Concepts of Suffering, Pain, Health, and
Healing
• Palliative care specifically addresses the individual
patient’s experience of suffering due to illness
• Several concepts and theories about the nature of pain,
suffering, and health have been proposed in service of
the evolving conceptual framework of palliative care
• Pain is defined by the International Association for the
Study of Pain as “an unpleasant sensory and emotional
experience associated with actual or potential tissue
damage, or described in terms of such damage.”
 Effective Communication and Negotiating
the Goals of Care
• Changing the goals of care from cure to
palliation near the end of life can be both
emotionally and clinically challenging. It
depends on determination of a clear prognosis
and can be aided by effective communication
• There are validated tools for prognosis in critical
illness (APACHE, MODS, etc.), and with most
advanced diseases, functional status is the most
powerful predictor of survival
Six steps to communicate
effectively and compassionately :
1. Getting started by selection of the
appropriate setting, introductions,
and seating
2. Determining what the patient or
family knows
3. Determining what the patient or
family wants to know
4. Giving the information
5. Expressing empathy
6. Establishing expectations,
planning, and aftercare
Communicating unfavorable news:
important principles
• Setting: Find a quiet, private place to
meet. Sit down close to the patient
• Listen: Clarify the patient’s and/or the
family’s understanding of the situation
• “Warning shot”: Prepare patient and
family and obtain their permission to
communicate bad news (e.g., “I’m afraid
I have bad news.”)
• Silence: Pause after giving bad news.
Allow patient/family to absorb/react to
the news
• Encourage: Convey hope that is realistic
and appropriate to the circumstances
(e.g., patient will not be abandoned;
symptoms will be controlled)
 CARE AT THE END OF LIFE
The Syndrome of Imminent Demise
• In a patient who has progressed to the terminal stage of an
advanced illness, a number of signs provide evidence of
imminent death : decrease in desire and requests for food
and fluids, dry mouth, mouth breathing, difficulty swallowing.
• Patients near death develop great difficulty clearing
oropharyngeal and upper airway secretions → noisy
breathing or the so-called “death rattle.” As death
approaches, the respiratory pattern → apnea
• As circulatory instability develops near death, patients may
exhibit cool and mottled extremities
 Common Symptoms at the End of Life and
Their Management
• The three most common, major symptoms that
threaten the comfort of dying patients in their last
days are respiratory, pain and cognitive failure
• General principles that are applicable to symptom
management in the last days of life :
1. anticipating symptoms before they develop
2. minimizing technologic interventions (usually manage
symptoms with medications)
3. planning alternative routes for medications in case the
oral route fails
• Teatments of dispnea (air hunger)
– opioids (primer)
– air movement across the face generated by a fan
– humidified supplemental O2 to avoid exacerbation of dry
mouth
• Nonpharmacologic therapy : massage therapy, music
therapy, art therapy, guided imagery, hypnosis,
physical therapy, pet therapy, etc
• Cognitive failure at the end of life is manifested in
mostpatients by increasing somnolence and delirium
 Pronouncing Death
• In the hospital, the declaration of death becomes part
of the medical or legal record
• Physical signs of death a physician should look for in
confirming the patient’s demise :
– complete lack of responsiveness to verbal or tactile stimuli
– absence of heart beat and respirations
– fixed pupils
– skin color change to a waxen hue as blood settles
– gradual poikilothermia
– sphincter relaxation with loss of urine and feces
 Aid in Dying
• Medical assistance in dying is a complex ethical and legal
issues with divergent opinions among the public and
healthcare providers
• Aid-in-dying laws in the United States allow physicians to
prescribe a lethal dose of medication to mentally,
competent, terminally ill adult patients for the purpose of
achieving the end of life
• Although surgeons outside of the critical care arena may
only infrequently be asked to participate in aid-in-dying, it is
important to be familiar with local legislation so that
appropriate information can be provided to patients who
request it
PROFESSIONAL ETHICS: CONFLICT OF INTEREST,
RESEARCH, AND CLINICAL ETHICS
Conflict of Interest
• Conflicts of interest for surgeons can arise in many
situationsin which the potential benefits or gains to
be realized by thesurgeon are, or are perceived to
be, in conflict with the responsibility to put the
patient’s interests before the surgeon’s own
• Conflicts of interest for the surgeon can involve
actual or perceived situations in which the individual
stands to gain monetarily by his or her role as a
physician or investigator
 Research Ethics
• Emanuel and colleagues described seven
requirements for all clinical research studies to be
ethically sound :
– value
– scientific validity
– fair subject selection
– favorable risk-benefit ratio
– independent review
– informed consent
– respect for enrolled subjects
 Special Concerns in Surgical Research
• A significant issue for clinical surgical research is that
many surgical studies are retrospective in nature and are
not commonly undertaken in a prospective, double-blind,
randomized fashion
• A second major issue for surgical trials is whether it is
ethically acceptable to have a placebo-controlled surgical
trial
• Despite difficulties with designing a surgical trial in which
the surgeon could ethically perform a sham operation,
there are specific circumstances that allow for placebo
operations to be conducted, so long as certain criteria are
met and are analyzed on a case by case basis
 Surgical Innovation
• Such innovations and technologies have served to
move the field of surgery forward
• When developing new and innovative techniques,
the surgeon should work in close consultation with
his or her senior colleagues, including the
chairperson of the department
• More senior individuals can provide sage ethical
advice regarding what constitutes minor innovative
changes in a technique vs. true novel research.
 The Ethics of Authorship
• According to International Committee of Medical Journal
Editors (ICMJE) best practices recommendations, authors
should fulfill each of the following four criteria :
1. Substantial contributions to the conception or design of the work;
or the acquisition, analysis, or interpretation of data for the work
2. Drafting the work or revising it critically for important intellectual
content
3. Final approval of the version to be published
4. Agreement to be accountable for all aspects of the work in
ensuring that questions related to the accuracy or integrity of any
part of the work are appropriately investigated and resolved
• Contributors who do not fulfill all four criteria should be
named in the manuscript in the acknowledgment section.
Clinical Ethics: Disclosure of Errors
• Disclosure of error is consistent with the ethical virtue of
candor (e.g., transparency and openness) and the ethical
principle of respect for persons by involving patients in
their care
• Failing to disclose errors to patients undermines public
trust in medicine and potentially compromises adequate
treatment of the consequences of errors and effective
intervention to prevent future errors
• Information regarding a medical error may be needed so
that patients can make independent and well-informed
decisions about future aspects of their care
 Key Points
1. The physician should document that the
patient or surrogate has the capacity to make a
medical decision.
2. Sufficient details regarding diagnosis and
treatment options should be disclosed to the
patient so that the patient can provide
informed consent.
3. Living wills are written to anticipate treatment
options and choices in the event that a patient
is rendered incompetent by a terminal illness.
4. The durable power of attorney for healthcare
identifies surrogate decision makers and
invests them with the authority to make
healthcare decisions on behalf of patients in
the event that they are unable to speak for
themselves.
5. Surgeons should encourage their patients to
complete a living will and clearly identify their
surrogates early in the course of treatment.
6. Earlier referrals and wider use of palliative
and hospice care may help more patients
achieve their goals at the end of life.
7. Earlier referrals and wider use of palliative
and hospice care may help more patients
achieve their goals at the end of life.
8. Individuals working together on research
endeavors should have clear discussions
early in the planning process about
authorship, and those discussions should
be continued throughout the project or
study.
9. Disclosure of error is consistent with recent
ethical advances in medicine toward more
transparency, openness with patients, and
the involvement of patients in their care.
Thank You