Seminars in Oncology Nursing, Vol 30, No 4 (November), 2014: pp 287-295 287

ETHICAL AND LEGAL ISSUES IN

PALLIATIVE CARE
MARY S. MCCABE AND NESSA COYLE

OBJECTIVES: To provide foundational knowledge about approaches to ethical

decision-making that arise as part of palliative care of cancer patients and
their families.
DATA SOURCE: Journal articles, research reports, state and federal
regulations, professional codes of ethics and state of the science papers.
CONCLUSION: More and more, cancer deaths occur after a long progressive
illness, requiring ongoing goals of care discussion and a focus on joint
decision-making. No matter how diverse the community or how advanced
the healthcare setting, the needs, preferences, and values of the patient and
family will continue to be at the core of palliative care.
IMPLICATIONS FOR NURSING PRACTICE: The increasingly complex healthcare
environment makes it essential that nurses have an understanding of
medical ethics and relevant federal and state laws so that this knowledge
can be applied to the many issues arising in palliative and end-of-life care.
KEY WORDS: Palliative care, bioethics, end-of-life conflict, nursing codes of
ethics

A
basic knowledge of ethics, relevant fed-
eral and state law, and how these inter-
sect with palliative care and end-of-life
care provides a necessary framework
for oncology nurses working in an increasingly
Mary S. McCabe, RN, MA: Director, Survivorship Pro-
gram, Chair, Ethics Committee, Memorial Sloan Ketter-
ing Cancer Center, New York, NY. Nessa Coyle, ACHPN,
PhD, FAAN: Consultant in Palliative Care and
Bioethics, Memorial Sloan Kettering Cancer Center,
New York, NY.
Address correspondence to Mary S. McCabe, RN, MA,
Memorial Sloan Kettering Cancer Center, 1275 York
Ave., Room 2101J, New York, NY 10065. e-mail:
mccabem@mskcc.org
Ó 2014 Elsevier Inc. All rights reserved.
0749-2081/3004-$36.00/0.
http://dx.doi.org/10.1016/j.soncn.2014.08.011
complex healthcare environment. The National
Consensus Project for Quality Palliative Care em-
phasizes this aspect of care in Domain 8: Ethical
and Legal Aspects of Care, where it states in Guide-
line 8.1 ‘‘The patient or surrogate’s goals, prefer-
ences, and choices are respected within the limits
of applicable state and federal law and within cur-
rent accepted standards of medical care and profes-
sional standards of practice. These goals,
preferences, and choices form the basis for the
plan of care.’’1
In the United States, as well as other technolog-
ically advanced countries, the majority of cancer
deaths occur after a long and progressively debili-
tating illness. Co-morbidities are common and
symptoms with suffering tend to be cumulative.
Sudden deaths, although they do occur, are
much less frequent. The combination of advances
288 M.S. MCCABE AND N. COYLE
in science and medical technology, concerns
about paternalism, emphasis on patient auton-
omy, and reluctance to offer a clinical judgment
in guiding the decisions of patients and their fam-
ilies have complicated the picture. Healthcare
providers have the means to prolong life, but also
the means to prolong the dying process. This
double-edge sword has led to both benefits and
challenges for society and an implicit responsi-
bility to provide care that is clinically and ethically
appropriate.2 Clinical judgment and effective
communication are essential ingredients in the
ethics of care. Illness with a long trajectory pro-
vides both the opportunity and the obligation for
nurses and other healthcare professionals to
have ongoing conversations with patients and
their families about their desire for present and
future healthcare interventions that align with
their values, beliefs, and goals. Presenting the pa-
tient and or family with the opportunity to have
these conversations (for example, at key points
in a disease trajectory, such as at time of initial
diagnosis or when the disease has progressed and
goals of care need to be revisited) is an ethical obli-
gation. The need to have these conversations be-
comes even more urgent when the patient
presents with advanced disease.2-4
CASE
An 88-year-old orthodox Jewish man pre-
sents with recently diagnosed thyroid can-
cer and extensive pulmonary metastases.
He is not a candidate for chemotherapy or
surgery, but radiation therapy is being
considered for palliation. The patient, who
is alert but confused, is admitted to the hos-
pital for dyspnea. He has a devoted, extended
family that communicates well with each
other. His wife is deceased and his two
daughters are his healthcare agents. They
both defer, however, to one of the patient’s
sons-in-law (who is a Rabbi) for decisions
about care. An ethics consult is called by
the primary care team for assistance in ad-
dressing the patient’s code status, as well
as to answer the family’s questions about
the institutions policy regarding Jewish
Law around end-of-life care. After meeting
with the clinical team, the ethics consultant
speaks with the daughters and one son-in-
law and then meets with the son-in-law
who is the Rabbi. A very extensive discussion
is held regarding what needs to be done to
fulfill Jewish law and how this could be
done without causing the patient any
additional suffering. From the Rabbi’s pers-
pective, DNR may be appropriate, but nutri-
tion, hydration, and oxygen need to be
provided to the patient. The consultant dis-
cusses what can be done to fulfill the spirit
of these requirements. It is explained that
the patient is at risk for aspiration pneu-
monia and that oral feeding may no longer
be safe. The risks associated with tube feed-
ings are also explained. The Rabbi does not
question this clinical judgment and agrees
that the nutrition and hydration require-
ments can be fulfilled with intravenous
fluids, if needed. The question of intubation
without cardiac resuscitation is raised. It
is explained that intubation is uncomfort-
able and that the patient would in all likeli-
hood need to be sedated afterwards. The
Rabbi states that he does not want his
father-in-law to suffer and that the patient
himself had expressed that wish. After exten-
sive discussion, he states that if the patient
stops breathing or his heart stops, ‘‘it will
be God’s wish and the clinical staff should
not interfere.’’ The family is in agreement.
The patient’s condition deteriorates over
the next few days and he dies peacefully
with his family at the bedside.
Comment – respect for the family, their
values, and traditions, identifying the
decision-maker, and accommodations on
both sides facilitated this man’s peaceful
death.
CONTEXT AND CULTURE MAKE A DIFFERENCE
Although the tenets of bioethics–doing good,
avoiding harm, respecting people and their com-
munities, and justice–are of concern to every cul-
ture and society, how they are conceptualized is
grounded in the moral traditions and philosophy
of a particular society and culture, as reflected in
the above case. For example, many cultures do
not share the primacy of the value of individualism
and individual autonomy.5,6 The family as a whole,
rather than the individual, or a religious leader, as

illustrated above, may make the important health-
care decisions. In addition, truth telling in the
setting of advanced disease may be seen as doing
harm rather than doing good. The norms of a soci-
ety evolve and change, however, and multiple sub-
cultures may be present in one society and indeed
within one family. In some cultures, societies, and
religions, moral distinctions differ from the domi-
nant culture. The following examples illustrate
end-of-life situations viewed through the lens of
‘‘Western’’ bioethics, where no moral distinctions
are made: 1) Withholding versus withdrawing
treatment is not morally distinct. A justification
for not starting a treatment is also sufficient for
stopping it. 2) Artificial nutrition and hydration
and other life-sustaining technology such as a
ventilator are medical treatments, and as such
can be withheld or withdrawn. 3) The right to
refuse treatment is not dependent on the type of
treatment. A person with capacity has the right to
refuse any or all treatment.6
In addition, The Principle of Double Effect (ie, in-
tended versus unintended but foreseeable conse-
quences of an action) is relevant to both bioethics
and palliative care. For example, a symptomatic
patient at end-of-life may require increasing doses
of analgesics to control pain. Although escalating
opioid doses in response to the level of pain or dys-
pnea does not hasten death in most patients, it may
do so in a specific case. To evoke the principle of
Double Effect, the act must be morally good or
neutral (eg, controlling pain or dyspnea) the good
effect is intended (relieving suffering); the bad ef-
fect is merely foreseen as a potential (hastening
death); the bad effect is not the means to the good
effect (intent to kill the patient to relieve the
suffering); and proportionality (the good trying to
achieve outweighs the bad that might happen) –
this may vary based on goals of care.6,7 Ethical is-
sues at end-of-life are emotionally loaded and
when cultural or spiritual values are in opposition
to the dominant cultural norms, ethical conflicts
may arise. Because of these as well as other factors,
there is a natural interface between ethics and
palliative care.2,8
ETHICS AT THE BEDSIDE
Although the patient and family is the unit of
care in palliative care and end-of-life care, the
healthcare provider’s primary obligation is to the
patient. This obligation to the patient comes into
ETHICAL AND LEGAL ISSUES IN PALLIATIVE CARE 289
play in the following situations: the patient and
family disagree on the goals of care; the family
and patient disagree on code status; the family at-
tempts to override the patient’s advance direc-
tives; the family attempts to interfere with
symptom management, especially around the
use of opioids; the family does not want the patient
to know their diagnosis (‘‘don’t tell mama’’); or the
family’s voice drowns out that of the patient, who’s
voice is lost.9-11 The importance of nurses’ moral
sensitivity and advocacy in recognizing and ad-
dressing these issues is clear.12,13
CASE
The patient is a 76-year-old man who was
diagnosed at a community hospital with
neuroendocrine cancer with metastases to
the liver. He began chemotherapy at the facil-
ity, but this was stopped because of urinary
retention, severe gout, and dehydration.
His functional status quickly declined and
he became severely debilitated. The patient
and his family sought a second opinion at a
comprehensive cancer center regarding his
treatment options. Before the scheduled visit
the patient’s daughter called to request that
the staff not engage the patient in any discus-
sions regarding his diagnosis, treatment op-
tions, and prognosis, and that all discussion
and disclosure of information be directed to
her and other members of the family. An
ethics consultation was requested by the
team to discuss how best to deal with this sit-
uation. The ethics consultant explained that
in the matter of truth-telling the clinician’s
responsibility is primarily to the patient
and secondarily to the family, although cul-
tural issues may be relevant. The consultant
recommended that the physician and office
practice nurse first meet with the patient
alone to determine his true wishes regarding
disclosure of his healthcare information and
then discuss his preferences with him, his
daughter, and other family members
together during an office visit. This
approach allowed the patient to express his
preference for full disclosure but with the
desire to have his daughter included in
important messages and decisions. During
the clinic visit, with his daughter present,
290 M.S. MCCABE AND N. COYLE
the patient clearly stated that he wanted full
disclosure on all issues. The attending physi-
cian was thus able to discuss the incurable
nature of the patient’s disease, goals of
care, and specific aspects of staging and
sites of metastases. The discussion was
meaningful and the patient’s daughter had
no further objections once the patient clearly
stated his wishes with his family present.
Comment – Respect for autonomy gives the
patient the right to receive full disclosure
about their medical condition but also the
right not to be told this information but to
have it directed to another person.
A recent ethnographic study explored the
context in which ethically difficult situations
arise. Nurses reported challenges such as ‘‘admin-
istering treatments that cause suffering, being
honest without removing hope, and considering
the risks of speaking up.’’10
In addition, they described nine types of
ethically difficult situations:
end-of-life situations with futility as a ma-
jor concern;
end-of-life situations with patient auton-
omy as a primary issue;
fidelity to RN obligations but medical team
not listening;
end-of-life situation with honesty about
prognosis a concern;
patient capacity to provide informed con-
sent for clinical trial;
pain management when drug-seeking
behavior is suspected;
adolescent patients with cancer above age
18 years but parents continue to make all
decisions;
mental health capacity to comply with
complex treatments;
justice issues with insurance company
refusal to cover treatment.10,11
THE HISTORICAL INFLUENCE ON PALLIATIVE
CARE PRACTICE
Although moral principles should guide the pro-
fessional behavior and decision-making of all
healthcare providers, history has shown that it is,
unfortunately, necessary to set out ethical stan-
dards in the law to require their consistent applica-
tion by all.14 One of the most important examples
for why the coupling of ethics and law has been
necessary can be traced back to the Nuremberg tri-
als of Nazi physicians and researchers who had sub-
jected concentration camp prisoners to cruel
experiments without their consent and knowledge.
The conclusions of this Military Tribunal, which
became known as the Nuremberg Code, set forth
10 ethical principles regarding human experimen-
tation and established the moral standard that the
‘‘voluntary consent of the human subject is abso-
lutely essential.’’15 More than any previous ethical
code for the conduct of research, it was remarkably
specific in requiring free choice. Building on this
precept of respect for persons, the National Com-
mission for the Protection of Human Subjects of
Biomedical and Behavioral Research issued The
Belmont Report in 1979. This code set out three
principles, or prescriptive judgments, that are rele-
vant to both clinical research and clinical care in
our Western cultural tradition: respect for persons,
beneficence and justice.16 These principles
continue to be applied today to the identification
and assessment of ethical issues in palliative care,
as highlighted in the cases included in this article.
Then through the courts, two important cases high-
lighted the fact that there are limits to physician au-
thority and expanded the concept of surrogate
decision-making and the right to refuse treatment.
In 1976, the New Jersey Supreme Court in the case
of Karen Ann Quinlan gave the patient’s father the
right, as the surrogate decision-maker, to choose a
physician who would support his desire to remove
the ventilator, thus allowing for the withdrawal of
ventilator support in a permanently unconscious
patient.17 In 1990, in the Nancy Cruzan case, the
US Supreme Court decision allowed for the discon-
tinuation of artificial nutrition and hydration (both
were categorized as medical treatment), also in a
permanently unconscious, young woman.18 Both
cases set out the palliative care concepts we use
today; respect for the patient’s right to refuse treat-
ment and acknowledgment of the rights of surro-
gates to make decisions for patients when they no
longer have capacity to make medical decisions
for themselves.
THE LAW AND THE ETHICS OF HEALTHCARE
PLANNING
In recent years, the historical precedence estab-
lished for the ‘‘respect for persons’’ concept

continues with considerable focus on the rights of
patients as ‘‘autonomous agents’’ to make their
own healthcare decisions. Alongside this move-
ment has been a parallel effort to assure that the
rights of patients are protected even when they
no longer have the capacity to make healthcare
decisions. Both federal and state laws have
continued to focus on protecting these rights.
The Patient Self Care Determination Act, passed
by Congress in 1990, requires that hospitals and
other healthcare institutions provide information
about advance healthcare directives to adult pa-
tients upon their admission to the healthcare facil-
ity.19 The intent of the law is to ensure that
patients can make their own healthcare decisions,
accept or refuse treatment, and communicate
their preferences for future care should they
become incapacitated through an advance direc-
tive. More recently, states passed legislation sup-
porting the use of advance directives called
either Medical Orders for Life Sustaining Treat-
ment (MOLST) or Physician Orders for Life
Sustaining Treatment (POLST).20 Each of these
documents is a tool to communicate the prefer-
ences developed by a patient in conjunction with
the healthcare team. All but seven states and the
District of Columbia currently have or are devel-
oping such laws.20
ETHICAL ISSUES AT THE END-OF-LIFE
Increasingly, as patients and families are
involved in healthcare decisions, value conflicts
arise when there are differences in the desired
plan of care. Although these differences are most
often attributed to conflicts between clinicians
and patients, they may also exist between health-
care providers and healthcare teams. Regardless
of the parties involved, the issues causing the con-
flict are characterized by: attempting to discern
and make the ‘‘right’’ decision that benefits the pa-
tient, and creating a supporting framework about
what makes a particular decision or a particular ac-
tion the ‘‘right’’ choice.21 The areas for dispute are
extensive, such as brain death determination by
neurologic criteria, terminal sedation, voluntary
stopping eating and drinking at the end-of-life,
artificial nutrition and hydration, resuscitation
orders, euthanasia, and physician-assisted suicide.
Each of these topics deserves attention and exten-
sive discussion, but two that are particularly
relevant to nursing practice are highlighted.
ETHICAL AND LEGAL ISSUES IN PALLIATIVE CARE 291
Resuscitation Decisions
Cardiopulmonary resuscitation (CPR) was
initially developed for acute illnesses, such as
myocardial infarctions, but CPR has now become
a standard intervention (regardless of diagnosis)
unless there are specific orders to the contrary.
The lack of a DNR order for a terminally ill patient
leads to ethical conflicts for the healthcare team
because CPR is almost never successful in these in-
dividuals.22 Understanding the reasons for the
reluctance to permit a DNR order is essential.
There can be religious or cultural reasons that pa-
tients and their families request resuscitation, but
there also may be misunderstandings about what
such a procedure entails and whether the DNR re-
stricts other care of the patient. For some patients
and families, they are not making the decision, but
rather it is being made by a religious figure who
guides the decision-making, thus making it criti-
cally important to engage this key figure in the dis-
cussion. Patients and families may also fear that
DNR translates into ‘‘Provide No Care’’ and once
the DNR is in place, the patient will no longer be
turned or bathed and all other interventions will
be stopped, including supportive care.21,22
Through compassionate and sensitive communica-
tion, these concerns can be addressed and deci-
sions made that are in keeping with the values of
the patient.
Fluids and Nutrition
Withholding fluids and nutrition at the end-of-
life is an especially sensitive issue because food
and hydration are such essential human needs
and are central to the social interactions in
many cultures. Family members, in particular,
may become distressed when their request for
tube feedings are denied in the dying patient,
and they may become angry when counseled to
not give food or liquids orally to a dying patient
at risk of aspiration. In the first case, the family
may wrongly think that the nutrition being denied
will prolong survival; in the second case, the fam-
ily may feel they are being forbidden to perform
the one remaining act of caregiving that they can
still provide to their loved one.23,24 In both cases,
a sensitive approach to education and counseling
is important. Both medical and nursing associa-
tions, along with palliative care organizations, sup-
port the withholding of artificial nutrition and
hydration at the end-of-life, except in select pa-
tients. However, the application of these state-
ments requires that the nurse is knowledgeable
292 M.S. MCCABE AND N. COYLE
about the risks and benefits of such requested in-
terventions and can explain their being withheld
in terms of promoting the good of the patient.25
CREATING AN ETHICAL PRACTICE FRAMEWORK
Ethical care is an obligation of each individual
nurse, and, in support of this responsibility,
nursing codes of ethics form a framework that unite
individual nurses into a caregiving community with
ideals of professional conduct. The International
Council of Nurses (ICN) has put forth their code,
which states in its preamble: ‘‘Nurses have four
fundamental responsibilities: to promote health,
to prevent illness, to restore health, and to alleviate
suffering. The need for nursing is universal.’’ To
properly carry out these responsibilities, there
are four ethical standards of conduct in the ICN
code and they relate to: people requiring care, clin-
ical practice, professionalism, and co-workers.26 In
addition, the American Nurses Association has a
code of ethics and the tenets of this code consist
of nine statements, which describe the commit-
ment of nurses to patients, duty to self and others,
and duties beyond individual patient encounters.27
These codes of nursing ethics have two principal
functions as put forth by Benjamin and Curtis.28
First, they set out an enforceable standard of
minimal conduct that allows the profession to
discipline those who fall below this minimum stan-
dard; and second, they serve as a guide for in-
dividuals in deciding on actions in particular
situations.28 These codes are not merely a set of
rules, but rather they are a reminder to nurses of
the special responsibilities we have in caring for
the sick and highlight the responsibility we have
to use our knowledge and skills to help individuals
and families when they are at their most vulner-
able. Most importantly, the professional ideals ex-
pressed in these codes must be supported and
actualized to be of value. Such actualization can
occur in a number of ways, at the individual level,
at the unit work level, at the site of healthcare deliv-
ery, and at the institutional level. At all levels, actu-
alization requires ethical analysis and reasoning
specific to the situation at hand.
One important way in which these values can be
actualized is through the function of institutional
ethics committees. Such committees are very com-
mon in the US and throughout the world, and the
need for them reflects the complexity of healthcare
today, in particular oncology care. These commit-
tees were first organized in the mid 20th century as
institutional efforts to bring a formal ethical
perspective to clinical issues. However, they fell
short of this goal and were described as ‘‘a politically
attractive way for moral controversies to be proce-
durally accommodated.’’29 They were usually small
groups focused on particular issues, such as making
decisions about involuntary sterilization, abortion
committees that evaluated requests from women
who wished to terminate their pregnancies, and
the selection of individuals who would receive he-
modialysis among candidates with end-stage renal
disease.30 Fortunately, over time, clinicians, clergy,
and administrators came to see the value for inter-
disciplinary deliberations about issues related to
the rapid explosion of high-tech care, especially its
use at the end of life. In fact, in 1976, the Supreme
Court of New Jersey recommended in its decision
in the Karen Ann Quinlan case that hospitals have
an ethics committee to deal with termination of
life-sustaining treatments.17 The broader intent of
this recommendation, which evolved over time,
was to have a group to resolve healthcare conflicts
with ethical dimensions within the healthcare sys-
tem rather than resolving them in the courts. More
recently, the Joint Commission on Accreditation
of Healthcare Organizations has required since
1992 that each healthcare institution have a stand-
ing mechanism to address ethical issues and resolve
disputes.31
Thus, in the beginning, ethics committees
focused primarily on ethical conflicts related to
goals of care. Over time, the activities of ethics
committees have expanded to include three
defined functions: consultation, education, and
policy development/review, which then provide a
broad opportunity to assure that the institution de-
velops and encourages a culture of moral agency
with ethical obligations that guide practice. To be
effective in these two clinical domains of consulta-
tion and education, it is critically important that
nurses know about and be active members of ethics
committees. Because so much of oncology care is
provided by multidisciplinary teams, it is not only
natural but necessary for nurses to be part of the
committee function and to be confident in calling
on the ethics committee to assist in clinical situa-
tions when ethical issues arise. However, such con-
fidence and expertise does not arise overnight, it
requires the identification and commitment of
nursing leadership to encourage and even request
committee participation, if need be, and to support
nurses who speak up about clinical situations
where there is ethical conflict.

ETHICS CONSULTATION
Hospitals have increasingly incorporated
consultation into the role of ethics committees
and, by 2002, 81% of all US hospitals had an ethics
consultation service of some kind.32 As one might
expect, the majority of these consults deal with
conflict, most often at the end of life. But what is
driving this need for ethics consults? For one thing,
the healthcare system has become incredibly com-
plex and our approach with patients is to engage
them in joint decision-making and have them
more actively involved in their care. More than
ever before, patients and families face choices
that are difficult to understand and they are asked
to make decisions they often feel unprepared to
make. In addition, the coordination of care among
providers is often lacking because each specialist is
focused on a limited set of medical problems and
communication with the primary care provider
may be quite limited. Patients also have less well-
established relationships with their physicians
and these physicians have less time to spend with
their patients at a time when clear, understandable
communication is essential. But communication
and coordination problems are not the sole and
inevitable causes of ethics consults. There can
also be real disagreements about what constitutes
medically beneficial care, especially as our country
becomes increasingly diverse. An ‘‘ethics facilita-
tion’’ approach as described in Core Competencies
for Health Care Ethics Consultation: The Report of
the American Society of Bioethics and Humanities
offers a balanced approach to decision-making
when disagreements arise, as they will, and sets
out a template for a respectful dialogue among the
parties involved.33
ETHICS EDUCATION
One of the most important opportunities for
nurses to reduce moral distress associated with pa-
tient care is to develop a practice environment of
ethical inquiry so that problematic issues can be
identified, addressed, and resolved (Table 1).34
Certainly, such an effort requires a positive ethical
climate at the organizational level, but it can truly
be supported and enhanced by nurses themselves.
A number of nursing-led forums can be practically
and effectively instituted. For example, nurses on a
particular unit or practice site can take the lead in
setting up multidisciplinary debriefings after a
ETHICAL AND LEGAL ISSUES IN PALLIATIVE CARE 293
TABLE 1.
Components of an Ethical Inquiry in Complex Clinical
Situations
Patient/family issues
Socially and psychologically what issues are driving the
situation?
Whom do they involve?
Staff issues
Is there disagreement about medical management?
Is some other interstaff conflict being played out?
Joint issues
What is the relationship between the staff and the patient
and family?
What is the understanding of goals of care by different
participants?
Ethical issues
Is there an ethical dilemma? A true conflict of values that
cannot be reduced to any other problem or
misunderstanding?
Are there cultural or religious issues at play here?
Legal issues
Are there laws or regulations, federal, or state that impact
the case?
Could any of these create a potential clinical/ethical
conflict? What is the nature of that conflict?
(Adapted and reprinted with permissions from Lederberg.34)
particularly difficult case. It can be more than
peer support with particular focus on the ethical is-
sues at play, how they were addressed (or not), and
what would work better in the future. For example,
a debriefing centered on a case where the family
was requesting that the patient not receive pain
medication at the end of life, despite the assess-
ment by the nurses that the patient was in signifi-
cant pain, could focus on the professional
obligation to relieve suffering, as well as the legal
and clinical issues of the case. In addition, an ethics
curriculum can be developed by an interested
group that can be instituted as part of an already ex-
isting inservice program, nursing grand rounds, or
unit-based training. Such a curriculum could be
simple and include such topics as: truth telling, sur-
rogate decision-making, and medical futility. It
takes the interest, commitment, and enthusiasm
of one nurse to begin.
THE PARTNERSHIP OF PALLIATIVE CARE AND THE
ETHICS COMMITTEE
Increasingly, palliative care services are
becoming incorporated into institutions and prac-
tices, thus becoming a standard in the care of pa-
tients along the care continuum. As this occurs,
294 M.S. MCCABE AND N. COYLE
the palliative care specialists and generalists
interact with the ethics committee in such a way
as to mitigate the need for consults and to serve
as expert advisors in the development and dissem-
ination of ethics education programs. The Na-
tional Consensus Project for Quality Palliative
Care has defined palliative care: ‘‘Provides
comprehensive management of physical, psycho-
social, spiritual and existential needs of patients
(and families) that are facing a life limiting
illness.’’1 In distinction, the American Society of
Bioethics and Humanities Task Force on the
Core Competencies for Ethics Consultation has
defined Ethics Consultation as: ‘‘A service pro-
vided by an individual or a group to help patients,
families, surrogates, healthcare providers or other
involved parties address uncertainty or conflict
regarding value-laden issues that emerge in
healthcare.’’33 As one can see, the roles of each
group are separate and distinct, but certainly com-
plementary. One serves as a limited consult ser-
vice and the other as a service providing ongoing
care. Each is better because of the other in serving
patients, families, and clinical staff. In oncology,
many ethically complex issues at end of life fall un-
der the rubric of both palliative care and bioethics,
and both services may be involved in a particular
case. Often, an ethics consultation may result in
a suggested palliative care referral, and if palliative
care is already involved in a complex situation
they may recommend an ethics consultation to
help untangle the situation. In a review of an
ethics consultation database from two academic
institutions that related to adult patients with
REFERENCES
1. National Consensus Project for Quality Palliative Care.
Clinical practice guidelines for quality palliative care. Ed 3.
Pittsburgh, PA: National Consensus Project for Quality Care;
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consultation as well as an ethics consultation.8
CONCLUSION
New medical issues in oncology are increasing
and, as a result, there will continue to be ethical
challenges in clinical care. The virtual explosion
of technology and advances in molecular biology
now permit such things as genetically driven treat-
ment plans for many cancers and are rapidly ex-
panding our knowledge of individual and family
cancer susceptibility through genome and exome
analyses, often outpacing our ability to act on
this information. The ability of computers to
analyze mass amounts of patient data is also
driving the growing focus on learning healthcare
systems, which is blurring the distinctions be-
tween research and clinical care. At the same
time our country is becoming more and more
diverse, thus requiring greater sensitivity to reli-
gious and cultural issues around clinical
decision-making and end-of-life care. Yet, at the
center of all this change and scientific advance-
ment is the patient. No matter how sophisticated
the technology, how advanced the healthcare de-
livery system, or how diverse our community,
respect for the needs, values, and preferences of
the patient and family will continue to be at the
core of palliative care. Our ethical responsibility
as nurses will continue to be the obligation to
establish the trust of our patients and families
and apply the principle of beneficence in reducing
their suffering, especially at the end of life.
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