Ethical Challenges in Multi-Cultural Patient Care Cross Cultural Issues at The End of Life

SPRINGER BRIEFS IN ETHICS
H. Russell Searight
Ethical Challenges
in Multi-Cultural
Patient Care
Cross Cultural Issues
at the End of Life
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H. Russell Searight
Ethical Challenges
in Multi-Cultural Patient Care
Cross Cultural Issues at the End of Life
123
H. Russell Searight
Department of Psychology
Lake Superior State University
Sault Sainte Marie, MI, USA
ISSN 2211-8101 ISSN 2211-811X (electronic)

SpringerBriefs in Ethics
ISBN 978-3-030-23543-7 ISBN 978-3-030-23544-4 (eBook)
https://doi.org/10.1007/978-3-030-23544-4
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Contents
1 History and Background of End-of-Life Decision-Making

and Culture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ........ 1
1.1 Seminal Cases Highlighting the Importance of Advance
Care Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
1.1.1 Karen Ann Quinlan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
1.1.2 Nancy Cruzan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
1.2 Implications of the Quinlan and Cruzan Cases . . . . . . . . . . . . . . . 4
1.3 The Patient Self-Determination Act (PSDA) . . . . . . . . . . . . . . . . . 5
1.4 The Doctrine of Informed Consent . . . . . . . . . . . . . . . . . . . . . . . 6
1.5 The Blackhall et al. Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
1.6 Cross-Cultural Differences in Values at the End of Life . . . . . . . . 8
1.7 The Era of the Patient as an Autonomous Consumer . . . . . . . . . . 9
1.8 Medical Technology and the Rise of Subspecialty Care . . . . . . . . 10
1.9 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
2 Ethical Theories Applied to End-of-Life Medical Care . . . . . . . . . . . 15
2.1 Models of Ethical Decision-Making . . . . . . . . . . . . . . . . . . . . . . . 15
2.1.1 Utilitarianism (Consequentialism) . . . . . . . . . . . . . . . . . . . 16
2.1.2 Kant’s Deontology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
2.1.3 Virtue Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
2.1.4 Principlism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
2.1.5 Communitarianism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
2.2 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
v
vi Contents
3 A History of Physician “Truth Telling,” Informed Consent,

Legal and Religious Perspectives on End-of-Life Care . . . . . ...... 29
3.1 Brief History of Physician Disclosure of Diagnostic
and Prognostic Information to Patients . . . . . . . . . . . . . . . ...... 29
3.2 Legal Issues in End-of-Life Decision-Making: Selected
International Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
3.2.1 United States . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
3.2.2 Israel . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
3.2.3 Europe . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
3.2.4 India . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
3.3 Religion and the End of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
3.3.1 Islam . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
3.3.2 Judaism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
3.3.3 Christianity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
3.4 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
4 Whether and How to Inform Patients of “Bad News,” Family
Dynamics at the End of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . ... 45
4.1 Whether and How to Tell: Physician—Patient Communication ... 45
4.2 Cross Cultural Encounters in the U.S. and Canada: Interpreter
Mediated Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
4.2.1 Culture and Communication at the End of Life . . . . . . . . . 47
4.3 Family Dynamics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
4.3.1 The Individual and Their Family . . . . . . . . . . . . . . . . . . . 49
4.3.2 The Individual as Surrogate Decision-Maker . . . . . . . . . . . 53
4.3.3 Cross-Cultural Perspectives on Families at the End
of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ... 55
4.3.4 Hardwig: At the End-of-Life, Patients Are
an Unfair Burden to Families . . . . . . . . . . . . . . . . . . . . . . 58
4.4 The Physician as Part of the Family . . . . . . . . . . . . . . . . . . . . . . 59
4.5 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61
5 Advance Directives, Do Not Resuscitate Orders, Hospice,
Organ Transplantation and Physician Assisted Suicide . . . . . . . . . . 65
5.1 Advance Directives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65
5.1.1 How Many People Have Advance Directives? . . . . . . . . . . 66
5.1.2 Diversity and ADs in the United States . . . . . . . . . . . . . . . 67
5.1.3 Prevalence of ADs Outside the United States . . . . . . . . . . 68
5.1.4 Limitations of ADs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68
5.2 Do Not Resuscitate (DNR) Orders and Limiting Care . . . . . . . . . . 69
5.2.1 International Perspectives on DNR Orders
and Limiting Care . . . . . . . . . . . . . . . . . . . . . . ........ 70
Contents vii
5.3 Organ Transplantation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71

5.3.1 Organ Transplantation Internationally . . . . . . . . . . . . . . . . 72
5.4 Hospice Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 74
5.5 Physician Assisted Death . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76
5.5.1 The United States . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76
5.5.2 Canada . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77
5.5.3 Europe . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 78
5.5.4 The Netherlands and Belgium . . . . . . . . . . . . . . . . . . . . . 79
5.6 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81
6 Why Is There Such Diversity in Preferences for End-of-Life
Care? Explanations and Narratives . . . . . . . . . . . . . . . . . . . . . . . .. 85
6.1 Saying It Makes Death Real . . . . . . . . . . . . . . . . . . . . . . . . . . .. 85
6.2 The African-American Community and the Health Care System:
The Origins of Mistrust . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87
6.2.1 A History of Medical Exploitation . . . . . . . . . . . . . . . . . . 88
6.2.2 Mistrust as a Legacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90
6.3 Suffering May Have Meaning . . . . . . . . . . . . . . . . . . . . . . . . . . . 91
6.3.1 The Cultural Impact of the Holocaust on End-of-Life
Decision-Making in Israel . . . . . . . . . . . . . . . . . . . . . . .. 92
6.4 Life Is in God’s Hands . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 92
6.5 Family Loyalty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 94
6.5.1 Protecting a Seriously Ill Loved One from Emotional
Harm . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94
6.5.2 Respect and Do Not Burden Elders . . . . . . . . . . . . . . . . . 95
6.5.3 Maintain the Patient’s Hope . . . . . . . . . . . . . . . . . . . . . . . 95
6.5.4 Familismo . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
6.5.5 Filial Piety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
6.6 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
7 Conclusion: Continuing Changes in Marriage and Family;
Supporting Diverse Perspectives on End-of-Life
Decision-Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101
7.1 The Changing Family and Informed Consent . . . . . . . . . . . . . . . . 102
7.2 The Future of End-of-Life Decision-Making . . . . . . . . . . . . . . . . 103
7.3 Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
Chapter 1
History and Background of End-of-Life
Decision-Making and Culture
Don’t talk that way.
This admonition from members of the Navajo community arose in response to the
discussions of terminal illness and a patient’s desire for life-support—both of which
are implicit topics in discussions of advance directives. While required by federal
law in the United States, discussions of advance directives were seen as harmful by
Navajo elders:
…. You don’t say those things. And you don’t try to bestow that upon yourself, … The object
is to live as long as possible here on earth. Why try to shorten it by bestowing things upon
yourself (Carrese & Rhodes, 1995; p. 828).
The extension of life through reduced mortality from infectious disease, and the
increased sophisticated of medical technology have all contributed to the possibility
that we will, in the future, be in a state with a less than optimal quality of life and
questionable chance of recovery. While we may not be conscious, we will likely be
maintained alive with the assistance of ventilators, tube feeding, artificial hydration,
and other medical interventions. In the United States and most Western countries,
the past 50 years have seen a major shift away from physician authority to patient
centered decision-making. As a result, we are in an historical period in which we can
extend our autonomy regarding medical care to situations in which we are physically
no longer able to express our wishes. The discussion on the Navajo reservation noted
above was prompted by federal guidelines based on the Patient Self-Determination
Act (PSDA), that require healthcare facilities to raise the topic of advance care
planning with patients and encourage patients to complete an advance directive.
The implementation of the PSDA in the United States in the 1990s highlighted
some of the core issues and the diversity of perspectives in end-of-life decision-
making. These issues include whether we would want aggressive care to treat con-
ditions such as pancreatic cancer or instead, accept inevitable death and request
palliative care focusing on comfort measures. Because of our increased longevity
and the rise in neurocognitive disorders with age, many of us may not have the
cognitive ability to make a medical decision when the time arises. Patients who are
© The Author(s), under exclusive license to Springer Nature Switzerland AG 2019 1
H. R. Searight, Ethical Challenges in Multi-Cultural Patient Care,
SpringerBriefs in Ethics, https://doi.org/10.1007/978-3-030-23544-4_1
2 1 History and Background of End-of-Life Decision-Making and Culture
comatose and on life support obviously do not have the ability to render a current
decision about desired medical care.
Additionally, when the PSDA was implemented with some ethnic and cultural
communities in the United States, such as the Navajo, it was not well received by
patients or their families. The PSDA assumed that patients would want to make deci-
sions about their own care. However in many Asian, Latin American, and southern
European countries, the patient’s family, rather than the patient, themselves, receives
information about the patient’s diagnosis and makes treatment decisions on the
patient’s behalf. It was also found that among other groups, such as African–Ameri-
cans in the United States, the idea of medical treatment being “futile” and prolonging
a loved one’s suffering was not congruent with the spiritually-influenced worldview
of the patient and their family.
1.1 Seminal Cases Highlighting the Importance of Advance

Care Planning
Interest on the part of the professional health care community as well as the general
public in preparing for a time of terminal illness in which one can no longer voice their
wishes for various forms of life support as well as other potentially life-sustaining
medical interventions, stems from several well-publicized legal cases in the United
States. In these situations, relatively young patients were severely neurologically
impaired and unable to communicate. While being maintained through artificial
nutrition, hydration and ventilation, these patients demonstrated little likelihood of
recovery.
1.1.1 Karen Ann Quinlan
In April, 1975, Karen Ann Quinlan, a 21-year-old woman, was admitted to the hospi-
tal unconscious after reportedly ingesting a combination of tranquilizers and alcohol.
During the hospital course, she lost 50% of her body weight from 120 to 60 lb and was
placed on a respirator and fed through a tube. In November of that year, Ms. Quinlan’s
parents sought to have the respirator removed. The informal practice of physicians
discontinuing life-support for comatose patients was still relatively common (Pence,
2003, 2016). However, in Ms. Quinlan’s case, her parents directly asked the physi-
cian caring for their daughter to do so—a practice that was unusual. In response,
the doctors refused the parents’ request indicating that they were concerned about
the possibility of legal action including being sued for malpractice. The parents then
initiated legal proceedings. After a State Superior Court judge denied the parents’
request, that decision was reversed on appeal to the State Supreme Court. The State
Supreme Court indicated that if there was no reasonable possibility that Ms. Quinlan
1.1 Seminal Cases Highlighting the Importance of Advance Care Planning 3
would recover, the State’s interest in maintaining her life was overridden by Ms.
Quinlan’s interest in not continuing to be maintained alive artificially in her current
state (Pence, 2016). However the court-appointed representative for Ms. Quinlan
argued that withdrawing life support resulting in her death would be homicide. Ms.
Quinlan was receiving care in a facility affiliated with the Roman Catholic Church.
The nuns overseeing Ms. Quinlan’s care were also opposed to removing the venti-
lator. In his analysis, Pence (2016) argues that the local Church’s and the Catholic
hospital’s position may have been, at least partially, motivated by a US Supreme
Court ruling two years earlier, Roe versus Wade, which supported a woman’s right to
terminate a pregnancy. Catholic theologians testifying in the Quinlan case asserted
that there was no right to die and were concerned about the “slippery slope” into
euthanasia that the situation implied.
Despite the final court ruling, Ms. Quinlan’s ventilator was not abruptly stopped.
Instead, she was weaned from the ventilator over the span of many weeks and done
so in a way that allowed her to breathe on her own. Since Ms. Quinlan was comatose,
the court indicated that the patient’s father, rather than the physicians involved, was
the appropriate decision-maker on her behalf. One of the legal opinions from a
judge in the case stated that maintaining Ms. Quinlan alive constituted cruel and
unusual punishment. It was predicted that Ms. Quinlan would readily succumb after
the respirator was removed. However she was able to breathe on her own and did
continue to receive nutrition via a feeding tube. Ms. Quinlan died of pneumonia ten
years later in a nursing home (McFadden, 1985).
1.1.2 Nancy Cruzan
In 1983, 25-year-old Nancy Cruzan lost control of her car, ran off the road and ended
up laying facedown in a ditch filled with water. It was reported that at the scene of the
accident, Ms. Cruzan had no detectable vital signs. She reportedly stopped breathing
for 15 min immediately after the accident but was subsequently resuscitated. Three
weeks later, it was determined that Ms. Cruzan was in a persistent vegetative state
and could not swallow A feeding tube was implanted (Pence, 2016). After nearly five
years had passed, Ms. Cruzan’s parents requested that the feeding tube be removed.
However, the hospital was unwilling to do so because they were concerned that they
could be prosecuted for murder. Ms. Cruzan had demonstrated little responsiveness
and because of the anoxia associated with the accident, it was likely that her neurolog-
ical functioning was seriously and permanently impaired (Pence, 2003). A Missouri
probate court ruled that the feeding tube could be removed and emphasized that
adult patients had the right to refuse or discontinue life-support. However, the State
of Missouri intervened and appealed to the State Supreme Court which reversed the
lower court’s ruling. The State Supreme Court based their decision on the absence of
clear and convincing evidence about what Ms. Cruzan would have wanted in these
circumstances (Pence, 2016). The State Supreme Court indicated that no one can
refuse treatment for another person unless the patient had previously communicated
a clear choice which was well-documented. The case eventually went to the U.S.
Supreme Court which acknowledged that competent individuals do indeed have the
right to refuse treatment. However, if a patient’s decisional abilities are impaired,
clear and convincing evidence of their wishes, such as through a written advance
directive developed when the individual was competent, was required for discon-
tinuing treatment. In Ms. Cruzan’s case, this information was initially unavailable.
However, according to her parents, Ms. Cruzan had expressed to coworkers the desire
to never “live like a vegetable.” Cruzan’s physician referred to her current state as a
“living hell” and also recommended removal of the feeding tube. The testimony of
friends and coworkers, which was unavailable in previous court decisions, met the
lower court standards of “clear and convincing evidence” (Pence, 2016) and led to
a reversal of the State Supreme Court’s earlier decision. Shortly thereafter, the feed-
ing tube was removed. The Cruzan case became very politicized with right-to-life
supporters attempting to storm the hospital unit and reattach the feeding tube. Ms.
Cruzan died approximately 12 days after removal of the feeding tube.
1.2 Implications of the Quinlan and Cruzan Cases
The U.S. had witnessed two particularly challenging cases in which women were
being kept alive even though they had been nonresponsive for many years. These
cases became known internationally and provoked discussion and debate among
Europeran ethicicts (Kennedy, 1976; Truog, 2008). The key reason for maintaining
their lives was that these young women had not indicated a preference about the level
of care they desired if they were in nonresponsive/comatose state.
The protracted attention given to the Cruzan case in the media conveyed that med-
ical science could maintain life for years even though the life being preserved did
not exhibit evidence of the neurocognitive properties of awareness, communication,
and basic reasoning. The plight of the Cruzan family clearly illustrated how others
would make the decision about one’s continued life if the patient could not com-
municate their wishes. However, expressing one’s wishes indirectly through a past
conversation with family members or friends was not a firm foundation for health
care providers to act or discontinue treatment. Additionally, these cases illustrated
that resulting legal proceedings could require years to resolve with the patient exist-
ing in a prolonged persistent vegetative state (PVS). The Cruzan decision triggered
informal conversations among some of the general public about whether one would
want to be maintained alive if they were in a similar state.
It also made all concerned aware that they could be placed in a position of having
to represent the interests of an ill family member who had become incompetent—a
burden that a husband or wife did not want nor did the spouse want to place a loved
one under this duress. Statements such as those made by Cruzan’s physician about her
experience in an enduring non-responsive state (“a living hell”) led to conversations
that probed unknowns about medical science. For example, did individuals in a long-
term coma of many years ever regain consciousness? While recovery of awareness
1.2 Implications of the Quinlan and Cruzan Cases 5
became less likely as the coma endured, a very few patients actually did “wake up”
years later (Pence, 2003). Physicians and hospital administrators were concerned
about the legal implications of withdrawing life support—particularly being sued
for malpractice or even charged with homicide.
The publicity surrounding the Cruzan case appeared to accelerate the creation
of Do Not Resuscitate (DNR) policies that hospitals had begun developing in the
early to mid-1970s. Cardiopulmonary resuscitation (CPR) arose in the 1960s as a
technique for patients suffering anesthesia-related cardiac arrest. The technique was
featured on some popular medical television dramas—usually with great success
(Diem, Lantos, & Tulsky, 1996). CPR soon came to be employed on a much larger
scale with many patients experiencing cardiopulmonary arrest arising from diverse
causes. While later augmented by the PSDA, the DNR discussion became a standard
part of many hospital and nursing home admissions as well as a precursor to some
surgical procedures. Again, by formalizing their wishes, patients and/or families
were able to specify how aggressive their care would be—even though the general
public’s knowledge of the success rates of many interventions was inaccurate (Diem,
Lantos, & Tulsky, 1996).
1.3 The Patient Self-Determination Act (PSDA)
The central problem in the Cruzan case—clearly establishing the extent of care
that one would want on their behalf if they were unable to convey their wishes—
could be, it was argued, resolved with a clearly documented record of the patient’s
preferences established well in advance of life threatening illness. The mechanism
of this communication, an advance directive for treatment, would be a record that
would direct physicians to provide the level of care desired when the patient could
not express their wishes. One form of advance directive, the living will, at least in
theory, bypassed family members and lets the previously competent patient direct
their own care.
The federal Patient Self-Determination Act (PSDA), according to many commen-
tators, was a direct outgrowth of the public reaction to the Cruzan case. The PSDA
required that hospitals receiving federal Medicaid funding have policies for asking
all patients if they had an advance directive. If patients did not have a directive,
hospital staff were to educate patients about these legal documents and encourage
them to develop a record of their health care wishes. In early research on advance
directives, there seemed to be a strong consensus among adult patients across the
age spectrum that the documents were desirable. Additionally, there was a fairly
pronounced preference that aggressive life sustaining measures would not be desired
if one was comatose with a chance of survival (57%); in a persistent vegetative state
(85%); suffering from dementia (79%) and having dementia with a terminal illness,
(87%) (Emanuel, Barry, Stoeckle, Ettelson, & Emanuel, 1991).
1.4 The Doctrine of Informed Consent
Legally, the patient’s right to make healthcare decisions for themselves, including
declining recommended treatment such as refusing amputation of a gangrenous leg,
has its roots in a ruling by Judge Cardozo in Schloendorff v. New York Hospital
(1914) Cardozo asserted that … “every human being of adult years and sound mind
has a right to determine what shall be done with his own body.” In U.S. health
care law and clinical practice, there is a strong emphasis on individual autonomy. A
competent adult individual has the right to choose their medical treatment, including
the choice not to receive medical treatment and to terminate ongoing treatment an
example of the latter is the finding that between 8 and 31% of patients on dialysis
stop treatment on their own (Qazi, Che, & Zhu, 2018).
However, it eventually became apparent that in order to make genuinely
autonomous medical decisions, patients needed to be provided with adequate infor-
mation. The basic tenets of informed consent included disclosure of the patient’s
diagnosis, the impact of condition on the patient’s daily living, available treatment
options with accompanying risks and benefits and the prognosis with and without
treatment (Searight & Barbarash, 1994). Making healthcare decisions for oneself is
also predicated on the assumption that the patient exhibits decision-making capacity
and voluntarily provides consent (Walter, 1997). In order to have intact decisional
capacity, Grisso and Appelbaum (1998) indicated that patients must (1) Be able to
communicate A clear and consistent choice: (2) Understand relevant information;
(3) Appreciate their current health situation and both its short-term and long-term
consequences; (4) Based upon their understanding of the condition and its prognosis,
engage in an internally logical consistent reasoning process for selecting a decision
appreciate the information.
Physicians have been found liable for performing procedures on patients who have
not been provided with all relevant information with particular attention to risks
and foreseeable benefits. While patient autonomy, predicated on having adequate
comprehensible information, has been the basis of this litigation, the physician’s
defense has focused on beneficence—acting in the patient’s best medical interests.
Patient autonomy may conflict with physicians’ judgment about what was or would
be most beneficial to the patient. Legally, physicians have been found liable in which
they proceeded with treatment that they thought was in the patient’s best interests
without receiving the patient’s explicit advance consent. For example, in Dries vs.
Gregor, based upon a finding of a growth on their right breast, the patient agreed
to a biopsy of the breast to determine the possible presence of cancer. However,
during the biopsy, a partial mastectomy was conducted and substantial amount of
breast tissue removed; the growth was found to be benign. Based upon available
information, the physician argued that he had acted in the best interest of the patient to
prevent potential cancer from spreading and also to avoid having to perform a second
procedure. However, the patient had consented to only a much more conservative
intervention (Walter, 1997)—namely, a biopsy and had not been informed that a
1.4 The Doctrine of Informed Consent 7
more invasive procedure, resulting in removal of significant beast tissue, would be

performed.
While not consistently upheld in US courts, there are circumstances in which
physicians have argued that obtaining informed consent would adversely impact the
patient. In intentionally choosing to not inform a patient of medical “bad news,” a
strong case has to be made that the disclosure of the information could reasonably
be expected to adversely impact the patient’s condition (Walter, 1997). As will be
discussed later, this form of beneficence has been the basis of cultural values that
support non-disclosure.
With the publicity given to the Quinlan and Cruzan cases as well as the PSDA,
the elements of informed consent became “front and center” in patient decision-
making. A potential solution was to have individuals make decisions for themselves
in anticipation of being in the state in which they could not express themselves or
make decisions. A document such as a living will or an advance directive formally
appointing a durable power of attorney would both “speak” on the patient’s behalf. In
essence, theses proxies extended patient autonomy to situations in which the patient
could no longer indicate their wishes. As the scenario on the Navajo reservation
makes clear, both advance directives and living wills ask us to imagine what our
values would be if we were in a state in which our chances of survival were poor or
at best, unknown.
In cultures in which language, thought and action are inextricably linked, end of
life discussions are not hypothetical future possibilities but, instead, give terminal
illness and death a reality. In Carrese and Rhodes’ (1995) study, a number of their
informants would not even discuss advance care planning because of this perceived
danger. This same perspective, while not as explicitly stated as among the Navajo,
has been found in other cultures such as Bosnian immigrants (Searight & Gafford,
2005).
However, it was not solely patients who did not welcome discussions of possible
impending death. In the medical community a patient’s death is still often seen as a
failure on the part of physicians. Intensive care nurses have observed that end-of life
treatment decisions are often based on the physician’s rather than the patient’s needs:
“Too many [physicians] see death as a personal affront to their professional abilities
and do not visualize the dying process as part of life itself. Thus, many patients
suffer needlessly without adequate pain control and supportive care” (Beckstrand,
Callister, & Kirchoff, 2006; p. 41). As someone who has spent a great deal of time
training physicians, it was not unusual to see a resident physician in-training coming
off their shift of overnight call in the hospital breathing a sigh of relief because a
terminally ill patient had not died “on their watch.”
1.5 The Blackhall et al. Study
Within several years of the PSDA’s initiation, a provocative study on cross-cultural

end-of-life views by Blackhall and colleagues (Blackhall, Murphy, Frank, Michel, &
Azen, 1995) was published in the Journal of the American Medical Association. The
paper received a good deal of public attention in news accounts as well as served as an
impetus for future research on cross-cultural issues in end-of-life decision-making.
Blackhall et al. (1995) recruited samples of older adults of African–American,
Korean–American, Mexican–American and European–American background. The
participants were asked if they believed that patients should be informed about a seri-
ous cancer diagnosis and whether they should be informed directly of their prognosis.
In their groundbreaking work, these investigators found that there were major differ-
ences between these ethnic groups regarding end of life preferences. African–Amer-
icans and European Americans strongly endorsed the principle that patients should
be told their diagnosis and the majority of both groups believed that patients should
be informed of their prognosis even if it was terminal. Among Korean Americans,
fewer than half (45%) indicated that a cancer diagnosis should be disclosed to patients
with 38% indicating that they should be informed of their prognosis. For the Mexican
American sample, approximately 60% indicated that the patient should be informed
of the diagnosis and about 45% indicated that patients should be told of a terminal
prognosis. When asked who should make decisions about whether to put the patient
on life support, about 60% of African Americans indicated that the patient should
do so while approximately 15% said the physician and 25% said the family should
make this decision. For European–Americans, slightly more than 60% indicated that
patients should be the primary decision-maker regarding life support with fewer than
10% viewing the physician as the source of these decisions and approximately 20%
indicating that the family should be the primary decision-maker (Blackhall et al.,
1995). In contrast, nearly 60% of the sample’s Korean–Americans indicated that
the family should make the decision about life support followed by close to equal
representation of physician and patient as decision-makers. For Mexican Americans,
about 50% indicated that the patient should make life support decisions while 10%
indicated that the physician should decide with 45% indicating that these decisions
were the family’s role. Among the Mexican–American sample, those with fewer
years of formal education and those who were older were most likely to indicate that
the patient should not be told the truth nor should patients be the primary decision-
makers about treatment for a life-threatening condition (Blackhall et al., 1995). There
were suggestions that as Mexican Americans became more acculturated, they were
more likely to endorse patient-centered decision-making (Blackhall et al., 1995).
1.6 Cross-Cultural Differences in Values at the End of Life
While these data were provocative, the survey format used by Blackhall et al. (1995)
provided little information about the reasons for the diversity in values among eth-
nic groups. Follow up qualitative interview studies provided some insight into these
differences. In an interview with an older Korean American woman, Mrs. Kim, it
became evident that one’s duty to family members was far more important than indi-
vidual autonomy. In fact, it was incumbent upon the extended family to do anything
to prevent their loved one’s death (Frank et al., 1998).
1.6 Cross-Cultural Differences in Values at the End of Life 9
Culturally based objections to ADs were sometimes less tangible—there was a

feeling that one should not be forecasting the circumstances of ones’ own death. As
a recent Bosnian immigrant to the U.S. put it: “It’s like playing with your destiny.”
(Searight & Gafford, 2005). Additionally, even hypothetical discussions about future
death were seen as undesirable as illustrated by this exchange with Mrs. Kim:
Interviewer: “In order to use [a written advance directive]…, It is necessary to talk
about death when the potential patient is still conscious and healthy
what do you think about this?”
Mrs. Kim: “It is not good to talk about death in advance.”
Interviewer: “Even for the older people?”
Mrs. Kim: “I am also old. Although the person may be old, to talk on the issue
in advance is not good. If asked to sign such papers, without knowing
one’s future, how could I sign them?” (Frank et al., 1998; p. 423)
1.7 The Era of the Patient as an Autonomous Consumer
The contractual nature of advance directives may be seen as part of broader changes
in the physician-patient relationship, as well as in the nature of medical care. These
forces have likely contributed to a greater emphasis on patient autonomy. Changes in
medicine include replacing the long-term family doctor-patient relationship with a
more mobile physician work force. The family doctor depicted in Norman Rockwell
paintings, who knows the patient and their family well, has been replaced by physi-
cians who are employees of large healthcare organizations. As executive employees,
contemporary physicians, compared with colleagues a generation earlier, more read-
ily move from practice to practice within and between geographic regions. The rising
number of urgent care centers and walk in clinics—often housed in strip malls next
to retail stores or physically part of, chain-store pharmacies, while providing conve-
nience, does little to foster a stable, familiar, medical “home.” These clinics are based
upon values of availability and efficiency rather than having a long-term relationship
with the healthcare provider. Without this history of an enduring physician–patient
relationship, trust in a physician’s advice is likely to be received with greater tenta-
tiveness (Schlesinger, 2002). As public confidence in physician authority declined
(Schlesinger, 2002; Tomes, 2016)—a pattern also seen in universal access coun-
tries such as Canada and Great Britain—patients could no longer be sure that their
physician was looking out for them. As a result, patients needed to look out for
themselves. Under these circumstances, it is understandable that patients may wish
to take advance control over late life medical care–particularly when physically and
emotionally vulnerable and unable to verbalize their preferences.
The consumer orientation and patient rights movement as well as the availability
of specialized medical knowledge to the general public through the internet and phar-
maceutical companies’ direct marketing efforts (Schlesinger, 2002), are additional
factors which have moved medical decision-making further into the patient’s domain.
The growing emphasis on “patient as expert” contributed to a physician-patient rela-

tionship that is more collaborative than authority based. In the contemporary models
of patient-centered care now widely taught in U.S. medical schools, physician advice
is being replaced with shared physician-patient decision-making (Constand, Mac-
Dermid, Dal Bello-Haas, & Law, 2014).
1.8 Medical Technology and the Rise of Subspecialty Care
With the shift from acute to chronic illness, it has been argued that the conditions
that eventually lead to death—cancer and cardiovascular disease, in particular—are
“natural,” yet, prolonged, processes of ending lives no longer taken by rapid-onset
infectious illness. Historically, early kidney transplants and the first successful heart
transplant by Christian Barnard, underscored the ability to delay natural physical
deterioration. Our ability to be maintained alive as we age and amidst overall deteri-
oration in our general health status, has grown exponentially (Kaufman, 2015). While
organ transplantation and mechanical support for physiological functions were not
widely available in the past, these once-experimental treatments have become the
standard of U.S. medical care. When kidney dialysis was introduced in the United
States in Washington, a group of citizens, that came to be known as the “God Com-
mittee,” had to decide on the basis of personal characteristics who should receive
treatment and who would be denied dialysis (Markel, 2017). When the workings of
the “God Committee” became public through a widely circulated news magazine,
the response triggered rapid passage of federal legislation insuring kidney dialysis
for all who needed it.
With the passage of Medicare—essentially a form of universal health coverage
for senior citizens—in the mid 1960s, decisions needed to be made about which
treatments would be covered. The rise of the evidence-based medicine movement in
which research findings from clinical trials justify performing specific procedures
as well as having them funded by third parties, also contributed to relying upon a
growing array of therapies that could maintain life (Kaufman, 2015).
In many instances, it became unclear where to draw the line. Kaufman (2015)
presents a case of Mrs. Dang, a 72-year-old Asian American woman with chronic
liver disease. A liver specialist recommended that Ms. Dang receive a liver transplant.
The physician indicated that while the first year post transplant would be difficult
with the new liver, Mrs. Dang could live 10–15 years longer with no problems. One
of Ms. Dang’s daughters said “I need to ask my mother if she wants to live ten more
years.” (Kaufman, 2015; p. 41). Complicating the decision further for patients is that
about one out of three liver transplant patients experience significant complications.
Kaufman (2015), however, suggests that this aspect is downplayed when patients are
presented with the option of a transplant. During the family decision-making process
Ms. Dang’s daughters raised an ethical question: “… if you have cancer and decide
not to treat it, is that suicide? I don’t think so, but I wonder. If I think my mother
shouldn’t be listed for the transplant, is that murder?” (Kaufman, 2015; p. 42). As
1.8 Medical Technology and the Rise of Subspecialty Care 11
Kaufman (2015) points out, this type of dilemma only arose after Medicare began
paying for liver transplants.
Simultaneous with the development of new technology came new subspecialties
within medicine. Residency is no longer the end of formal medical education. Many
physicians, after a 3 to 4-year residency within a medical specialty such as internal
medicine or radiology, embark upon post-residency fellowship training focusing on
subspecialty areas within medicine. Subspecialty training in medicine has become
much more common. For example, a recent study found that approximately 90%
of residents graduating from an orthopedic residency went on to fellowship training
(Yin, Gandhi, Limpisvasti, Mohr, & ElAttrache, 2015). While this level of sophisti-
cation can no doubt benefit patients, it also leads to a fragmented, rather than com-
prehensive and holistic approach to patient care. When livers, hearts, knees, etc. are
viewed in isolation, the patient, situated in a life context, can be neglected. For exam-
ple, a urologist might propose a laser treatment for a narrowed urethra in an elderly
patient with rapidly advancing mid-stage dementia or late stage metastatic cancer.
While the laser treatment may indeed be the evidence-based treatment of choice for
the condition, the fact that a confused older patient with a predicted limited lifespan
will have to undergo treatments that requires them to lie perfectly still, may simply
not be feasible in the context of the patient’s cognitive impairment. Furthermore,
when the patient’s prognosis suggests a limited lifespan, it may be difficult to justify
the additional psychosocial strain of the procedure as being in the patient’s overall
best interest. Yet, when the patient’s urethra is viewed in isolation, the prognosis with
treatment for the specific urological condition is quite positive.
Evidence also supports the limitations of a narrow view of organ specific treatment.
Data suggest that among older patients with multiple medical conditions including
kidney failure, dialysis did not improve the patient’s likelihood of survival and also
was associated with declining functioning among those in nursing home settings.
However, as is the case with cancer patients, most dialysis patients receive aggressive,
hospital-based treatment during the last month of life and die in the hospital (Combs
et al. 2015).
While the broader social implications, including the patient’s quality of life, are
often neglected, the average age of those undergoing surgery and similarly inva-
sive interventions in the United States has been increasing. For example, stents to
open cardiac arteries are now routinely inserted among patients in their 80s and 90s.
Kaufman (2015) notes that as more older patients undergo the procedure and with
Medicare authorizing coverage for stent placement, not having a stent placed would
become sub-standard care. At the same time, there is controversy about the effective-
ness of stents with some medical investigators noting that they are no more effective
in preventing cardiovascular deaths than medication or changes in diet and exercise
(Kaufman, 2015; Redberg, Katz, & Grady, 2011).
In part, the rising influence of evidence-based medicine has also indirectly become
a factor in prolonging life. When older patients with multiple medical problems
receive a recommendation for kidney dialysis or transplant or for the installation
of a pacemaker, these endorsements are based on research evidence. However, it is
important to recognize that the samples in which these interventions were studied
and determined to be effective, often do not reflect clinical reality. Typically, patients
in medical research trials do not have a significant number of possible confounding
conditions. However, the absence of comorbid conditions does not reflect medical
reality—particularly among geriatric patients. Yet, since the treatment is supported
by the evidence, there is pressure for third-party payers to cover its cost. This pattern
is true for both private insurance as well as for government-based programs such as
Medicare.
1.9 Conclusion
While many of these technology-based end-of-life decisions are not yet common-
place in developing countries, as the number of intensive care units in Asia and Africa
increases along with medical devices such as ventilators, these concerns are likely to
arise. Moreover, the Westernization of medicine worldwide brings new ethical issues
and medico-legal standards to developing countries. As noted by Blank (2011), 75%
of the world’s population resides in regions in which disclosure of medical “bad
news” and autonomous patient decision-making are not the norm nor seen as desir-
able. However, it is often implied that the Western emphasis on patient autonomy is
the standard that all nations should adopt in their health care systems. However, as
illustrated by the Navajo and Mrs. Kim, even in the U.S., this emphasis on isolated,
self-determination may not be a universally-held value.
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physicians and other health professionals. New York: Oxford University Press.
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Chapter 2
Ethical Theories Applied to End-of-Life
Medical Care
2.1 Models of Ethical Decision-Making
While medical ethics can be dated back to the Ancient Greeks, cotemporary bioethics’
origin is typically dated to the early 1970s (Beauchamp & Childress, 2009, 2013). As
medicine became more complex with surgical procedures such as organ transplants,
advanced life-saving technology including kidney dialysis, mechanical ventilation,
and intensive care units, the moral dimensions of healthcare also became more appar-
ent. The Hippocratic Oath was no longer sufficient to guide the types of decisions that
healthcare professionals had to make themselves and with their patients. Rothman
(1982) notes that the attention to medical ethics led to “strangers at the bedside”—
including philosophers who became involved in medical care as members of newly
formed hospital ethics committees. There were other strangers appearing at the bed-
side. While hospitals and other healthcare institutions had historically been overseen
by physicians and occasionally by nurse administrators, a new profession, that of
healthcare executive became established. These professionals, even though they were
not involved directly patient care, rapidly displaced physicians in the organizational
leadership of many healthcare institutions. Because ethical decisions could have
legal ramifications, the philosophers were sometimes joined by these professional
healthcare administrators as well as attorneys specializing in medical law.
However, for healthcare providers seeking a protocol or definitive guide to
decision-making about what to tell patients or how to make decisions about main-
taining patients on life support, the guidance provided by professional ethicists was
often relativistic rather than decisive. It also became apparent with “right to die”
legal cases, that the courtroom was probably not the optimal setting to resolve these
issues. Additionally, health care ethics and medical law often did not coincide. For
example, many physicians, while recognizing the legality of abortion, view the pro-
cedure as morally wrong. Physicians and other health care professionals often use
terms, “ethical” and “unethical” but may have difficulty articulating the principles
and reasoning behind these judgments. The addition of applied philosophers to med-

16 2 Ethical Theories Applied to End-of-Life Medical Care
ical school faculty and hospital ethics committees provided a set of ethical models
to use in analyzing moral dilemmas. A brief overview of these theories follows.
2.1.1 Utilitarianism (Consequentialism)
Utilitarianism, generally associated with Jeremy Bentham (1748–1832) and John

Stuart Mill (1806–1873), emphasizes the outcome or consequences of actions rather
than the acts, themselves (Pence, 2016). At the micro level of individual patients, a
correct decision would be an action that had the greatest long-term benefit for the
patient. For example, if the patient had an estimated six months to live, a physician
might withhold information about the terminal diagnosis so that the patient would not
experience emotional distress during the final months of their life. To some extent,
the law of double effect reflects a utilitarian perspective. The law of double effect
essentially states that if a patient is given a palliative drug to reduce pain and the use
of the drug results in shortening the patient’s life, typically by being administered in
high doses for pain control, the benefit of pain relief may outweigh the added days of
a life in pain. This is a common practice and may not be considered direct euthanasia
since the objective is to make the patient comfortable rather than to end their life
(Boyle, 2004).
While not specifically labeled as such, a utilitarian ethic is operative in cultures
in which family members protect patients from information about serious illness
(Searight & Gafford, 2005). It may be argued that these families are performing
an informal quality-of-life assessment. Their argument is that since the patient’s
life may be limited and since they are already struggling with a disease which may
be associated with significant physical pain, why burden the patient further with
emotionally distressing news of a diagnosis such as pancreatic cancer (Searight
& Meredith, 2019). The means-to-a-desirable-end implicit in utilitarianism leads
to the moral conclusion that withholding information is perfectly acceptable if it
results in a desirable consequence. The courts and some ethicists have recognized
the value of nondisclosure on the basis of avoiding emotional harm. If, in the larger
context of the patient’s life, a physician did not notify the patient of information
that would be emotionally distressing and this decision reduced the overall lifetime
harm experienced by the patient, non-disclosure would be supported by a utilitarian
ethic (Searight & Meredith, 2019).
Historically, the courts have been inconsistent in their views of utilitarian or con-
sequentialist perspectives when the rationale for nondisclosure has been to prevent
patients’ psychological distress. Withholding information may be acceptable if pro-
viding the information would make the patient unwilling to go through surgery
to correct a life-threatening condition—a situation termed “therapeutic privilege”
(Johnston & Holt, 2006).
The rise of a consumer orientation among patients (Tomes, 2016), and a preference
in the U.S. for addressing patient dissatisfaction with medical care through the courts,
makes the utilitarian argument for withholding information from patients less viable
2.1 Models of Ethical Decision-Making 17
(Searight & Meredith, 2019). Ethically, the growing significance of principles such
as self-determination also make this position difficult to support.
Hardwig’s (1990) attention to the impact of an individual’s illness on the patient’s
family also includes some utilitarian reasoning. While he may object to the utilitar-
ian label, Hardwig’s (1990) argument is that a patient who has a terminal ongoing
illness, who is not likely to recover but whose maintenance on life support requires
significant financial time and energy investments on the part of family members, is
an ethically imbalanced state of affairs; many are suffering because of one individ-
ual’s unfortunate medical state. These contractual principles, while perhaps sound
from a utilitarian perspective, create a morally uncomfortable “trade relationship”
(Hardwig, 1990) between family members. Finally, from a cultural perspective, util-
itarianism’s future orientation is not congruent with socio-cultural norms prioritizing
the present (Hall, 1989).
2.1.1.1 “Big Picture” Utilitarianism in Health Care
In its most direct form, utilitarianism holds that an action by a healthcare professional
resulting in the greatest benefit to the greatest number of people is considered to be
the ultimately correct act. From a utilitarian perspective, there are no acts that are
considered universally right or wrong. One can only evaluate the morality of an
act in terms of its consequences (Searight & Meredith, 2019). At a community,
state or national level, utilitarianism addresses the optimal use of limited healthcare
resources. If a community hospital has a limited number of intensive care unit beds
and a patient who has been comatose for eight weeks is continuing to be treated
there at the insistence of family, hospital administrators will often intervene and
recommend that the patient be moved to a nursing facility. The argument is that ICU
beds are limited in number, care on the unit is costly, and this specialized treatment
could better serve patients with a greater chance of recovery. While this underlying
reasoning is often not stated explicitly, it is a major consideration in making these
decisions-particularly in areas where intensive care unit beds are limited.
2.1.1.2 QALYS, Health Care Policy, and Utilitarianism
Utilitarian thinking is implicitly involved in any type of rationing system. While

Britain’s National Health Service (NHS) often takes issue with the term “rationing”
being applied to the reasoning behind their policies, the principle of devoting limited
resources such as ventilator support in the hospital or kidney dialysis is based upon
the anticipated health benefit to patients with attention to their estimated lifespan.
More recently, the NHS has included the index, quality adjusted life years (QALY),
as a factor in making utilitarian decisions (Edwards, Crump, & Dayan, 2015). Quality
adjusted life years (QALYs) is a quantitative index of disease burden. It is a numerical
figure representing both the quality and quantity of one’s life. QALYs can be used
to represent the impact of an illness as well as the quantitative benefit of specific
treatments. Mathematically, in assessing the potential benefit of an intervention such

as stent placement, bariatric surgery for weight loss, open heart surgery, or treatment
of HIV with antiretroviral therapy, the quantitative value associated with the treat-
ment is multiplied by the duration of the treatment effect. Essentially, how much
improvement does the patient exhibit as a result of the intervention and to what
extent does the treatment lengthen their life? (Edwards, Crump, & Dayan, 2015).
However, the level of improvement associated with a treatment includes a subjective
component through expert opinion on the quality of a patient’s life.
Some of the criticisms of QALYs are that the numerical indices are not sensitive to
small, yet meaningful, changes in functional status associated with conditions such
as cancer. Additionally, the index has been seen as biased against the elderly. An
intervention that might improve cognitive functioning in an older patient might not
register significant change in QALYs if overall lifespan is not extended (Pettitt et al.,
2016). Despite this criticism of constructing a quantitative index to reflect something
as subjective as one’s quality of life, the index is applied in rationing policy decisions
such as in Great Britain’s National Health Service (NHS).
It had also been hoped by some healthcare policy professionals that QALYs could
provide a seemingly “scientific” basis for private or government-based health insur-
ance plans to refuse to fund treatments with a low probability of success. Pettitt et al.
(2016) note that among the ten medications in the United States that have the highest
sales and generate the most income for manufacturers and shareholders, these drugs
only benefit between 4 and 25% of patients taking them. When the question comes to
high priced cancer drugs that may only benefit 20–30% of cancer patients, the ques-
tion arises about whether this is the best use of limited financial health resources-an
issue that is particularly prominent in countries with government-based universal
coverage.
As mentioned above, the NHS often relies on QALYs in determining the funding
of treatments. In addition, archival data are often used to compare effectiveness of
newer treatments to existing therapies in terms of QALYs. However, the economic
costs of treatment are significantly weighted in some calculations.
A recent news article, stated that: “The priority … [of the NHS] has changed from
providing all the care that patients need… to dividing up the care that is available (or
the budget for it) so that it is distributed equitably” (Laurence, 2015). The organization
within the British government that makes these decisions is the National Institute
for Health and Care Excellence (NICE). A QALY standard used by NICE is that
a proposed treatment must provide improved quality or length of life at a cost of
20,000–30,000 English pounds.
A previously set limit for patients for end-of-life care was 50,000 English pounds
per QALY but may be as high as 80,000 English pounds for terminally ill patients
“…for whom an extra few months means more than for other patients” (Laurence,
2015).
The government of Singapore is performing a utilitarian analysis of QALYs as
applied to end-of-life care, and has been examining several policy alternatives. Sin-
gapore’s MediShield is a health plan for older adults which historically was for
catastrophic health problems. However, as the population of the country ages, there
has been interest in extending the range of benefits within this plan. In a study exam-
ining the public’s preferences for end-of-life treatments, Finkelstein, Bilger, Flynn,
& Malhotra (2015), in comparing older community residents with similarly aged
patients with cancer, found differences in types of treatment for which potential
patients were willing to pay. Those with cancer prioritized pain reduction and being
able to die at home. Of note, treatments that might provide moderate life extension
were not as important as high quality palliative care. From a fiscally driven utilitarian
perspective, the investigators concluded that future healthcare reform in Singapore
should not overemphasize costly end-of-life treatment since this was not the priority
of its senior citizens (Finkelstein et al., 2015).
In the 1980s, Britain’s NHS reportedly set a limit on kidney dialysis and trans-
plants—recommending these procedures only for patients 50 or under (Berlyne,
1982). An international study comparing nephrologists’ referral patterns for dialysis
found that American kidney specialists were more likely than Canadian or British
nephrologists to offer their patients dialysis (McKenzie, Moss, Feest, Stocking, &
Siegler, 1998). The investigators suggested that the American nephrologists were
more motivated by patient and family requests for treatment as well as fear of law-
suits than those practicing in Canada and Great Britain—both of which have universal
national health coverage. This difference was particularly pronounced when exam-
ining patients in a persistent vegetative state and those who exhibited dementia. In
these circumstances, almost 50% of the American nephrologists indicated that they
would provide dialysis if the family insisted upon it—rates for Canadian kidney spe-
cialists were 30% with 16% of British nephrologists agreeing to the treatment with
family insistence. About 10% of Canadian and British kidney specialists indicated
that financial constraints played a role in withholding dialysis (MacKenzie et al.,
1998). The NHS website for patients who are candidates for dialysis indicates that
someone who is in their 20s when they begin dialysis can expect to live 20 more
years; however, for those over 75 who begin dialysis, the site indicates that their life
may be prolonged for only 2–3 years.
2.1.2 Kant’s Deontology
The term deontology emphasizes duty—our behavior towards others is rooted in

our obligations. An essential Kantian concept is the categorical imperative–there are
moral absolutes that exist apart from the social context and laws. While there may be
situations in which the ends justify the means, the Kantian worldview holds that the
motivation for an act is irrelevant. For example, failing to disclose a cancer diagnosis
to a frail 92 year old, since this knowledge will create emotional distress, while
not significantly altering the patient’s life course, is deemed morally wrong since
dishonesty and deception are involved. A physician who does not routinely disclose
caner diagnoses to patients (“You have a small mass on your bladder; we can take
care of it.”) would be judged not on their benevolent motivation for obscuring the
truth to protect the patient from emotional harm but solely upon the fact that their
actions violated the categorical imperative of honesty. Deception is not permissible
under any circumstances regardless of honesty’s impact on the patient (Searight &
Meredith, 2019). A Kantian principle of always telling the truth would not be well-
received by the Navajo- and Korean-American interviewees described in Chapter
One. While Kant would recognize that the motivation for withholding information
may be to spare the patient harm, the consequences of being less than forthcoming
do not permit being untruthful (Searight & Meredith, 2019).
Physicians who do not accept assisting patients in ending their lives under any
circumstances—no matter how much pain and suffering the patient experiences,
the limited lifespan they have, the impact on the patient’s family etc.—are acting
from a Kantian categorical imperative. The physician’s role is to preserve life rather
than expedite a “good death.” Hardwig (2000) criticizes this approach as being
dehumanizing—there are no people, simply rules. Moreover, Kantian ethics denies
motivations and intentions in favor of impartiality (Hardwig, 2000).
Kantians also believe that people have inherent worth and that human beings
should never serve as a means to an end. This principle is raised when a patient who
has suffered “brain death” is viewed as a source for organs that would benefit other
patients. A process of implicit rationing of intensive care unit resources in favor of
younger patients with fewer comorbid medical conditions over elderly patients in
overall ill health would violate the Kantian precept that no one’s life is more valuable
than that of another person. Kant would likely find the use of QALYs to decide on
treatments for specific patients to be abhorrent. While many physicians see medicine
as too complex to have universal principles, moral absolutes do become evident
around issues such as euthanasia. Most countries, while permitting withdrawal of life
support, view deliberate physician acts to end a patient’s life, such as intentionally
prescribing lethal doses of medication, as homicide.
2.1.3 Virtue Ethics
Virtue ethics, exemplified by the Hippocratic Oath, (e.g., “Into whatever houses I
enter, I will go into them for the benefit of the sick and will abstain from every vol-
untary act of mischief and corruption; and further from the seduction of females or
males, of freemen or slaves”) emphasizes the physician’s moral character. In contem-
porary medicine, the Oath has often been reduced to “first do no harm,” despite the
fact that Hippocrates, did not write this famous phrase as part of the Oath. Hippocrates
did indicate that a virtuous physician would “take care that …[patients]…suffered
no hurt or damage.”.
With respect to assisting in an expedited death at the end-of-life, the Hippocratic
Oath states “I will neither give a deadly drug to anybody if asked for it, nor will I make
a suggestion to this effect.” However, several ethicists have noted that Hippocratic
physicians would not prolong a natural process of dying with interventions when
death was relatively imminent and unavoidable (Kass, 1991). However, Hippocrates
viewed the virtuous physician as one that would protect the patient from “needless”
emotional distress. Conceivably, Hippocrates would agree with cultures that believe
that disclosing diagnostic and treatment information to patients can be harmful.

Yet, Hippocrates, while limited in his choice of medical interventions, did seem to
individualize care based on patient characteristics.
In the early 1900s, Robert Cabot (1868–1939,) a member of the Harvard medical
school faculty and a largely self-educated ethicist, addressed the shift in views of an
effective modern physician. Rather than character traits, Cabot argued that, with the
rise of hospital care and scientific discoveries, physicians should “understand the spe-
cific diseases, their causes, signs, symptoms, courses, prognoses, treatments—and
whether each practitioner applied this understanding in the assessment and manage-
ment of each individual patient” (Jonsen, 2000, p. 85).
The rise of specialty medicine redefined the qualities of a good physician; “the
all-purpose general practitioner of the 19th century-a Christian gentleman of intrinsic
goodness, law-abiding and loyal to the codified rules of one professional society”
was no longer the ideal (Jonsen, 2000). “Whether or not the practitioner went to
church on Sunday, knew the Star-Spangled Banner, swore the Hippocratic Oath, or
adhered to precepts about consultation in the AMA code of ethics were …[no longer]
important criteria for judging professional propriety.” (Burns, 1977; cited in Jonsen,
2000, p. 85).
Virtue ethics shares with Kant’s deontology an emphasis on the clinician’s acts
rather than their consequences for the patient. The virtue perspective often takes
the form of a list of the actions and motivations of a “good” person. In the case of
healthcare, virtue ethicists, when confronted with a moral dilemma, ask “What would
a good physician do?” The Hippocratic Oath reflects this perspective as a narrative
of desirable and moral behaviors that an ethical physician exhibits.
In contemporary medical ethics, Pellegrino and colleagues (e.g., Pellegrino &
Thomasma, 1987) have been the most visible proponents of the virtue perspective. A
virtuous physician is one who embodies characteristics such as intellectual honesty,
compassion, fortitude, temperance, integrity, and self-effacement. In dealing with
patients, a virtuous physician carries out their duties with benevolence and humility.
A virtuous physician is also reflective and acts from a position of prudent wisdom,
termed phronesis (Pellegrino & Thomasma, 1987; Searight & Meredith, 2019). The
virtues perspective views end of life care as fundamentally guided by the physician’s
fiduciary responsibility to the patient rather than hospital procedures or legalisms.
Even though a medical action is the “right thing to do,” duties cannot be isolated
from the physician’s overall character. Virtue ethics, while certainly considering the
consequences of physician actions or recommendations, is not utilitarian. However,
this perspective is not strictly deontological, either. In contemporary medicine, adher-
ents of virtue ethics attempt to protect the patient from harm while encouraging and
representing patients’ independent decisions.
True beneficence typically involves fidelity to the best interests of the patient and
also results in enhanced patient autonomy (Pellegrino & Thomasma, 1993). How-
ever, recent discussions of informed consent suggest that full disclosure of medical
information may not necessarily enhance patient autonomy, particularly among those
who become anxious and are prone to cognitive distortions when confronted with
personally-relevant health care decisions. In reality, potentially threatening informa-
tion may reduce autonomy through eliciting anxiety, which in turn, compromises
rational information-processing (Epstein, Korones, & Quill, 2010). In situations
where the physician is reluctant to disclose an ominous prognosis, adherents of
virtue ethics encourage the clinician to consider what a trusted physician mentor
would do in the same situation (Searight & Meredith, 2019).
2.1.4 Principlism
Beauchamp and Childress (2009) reviewed existing philosophical approaches to

medical dilemmas and distilled them into four key principles: autonomy, benefi-
cence, non-maleficence, and justice. Principlism, sometimes referred to as “the four
principles” is the dominant approach to medical ethics in the United States. The first
three dimensions are most relevant in clinical situations; justice (i.e., treating others
equally) is relevant when end-of life decisions impact others directly, as in family
members quitting their jobs to care for a relative in a persistent vegetative state or
at the level of society, or when aggressive late life care contributes to inequitable
distribution of scarce health care resources.
Autonomy includes the concept of personal independence; the ability to exert
control over important decisions impacting one’s own life. The use of advance direc-
tives, as encouraged by the PSDA, allows one’s own independent values about the
quality of life and type of medical treatment desired to be expressed even when the
patient can no longer communicate. Patient autonomy is violated or compromised
when individuals have not been given all relevant information about a medical deci-
sion or are unable to cognitively retain and assimilate information and apply it to
their current health circumstances. A major criticism of principlism that makes it
difficult to apply to end of life dilemmas—is that the principles may conflict with
one another. When those conflicts arise, there is no logical system to resolve these
contradictions.
However, many commentators have indicated that the four principles are, in reality,
not equally weighted in patient decision-making and that autonomy is “first among
equals” (Gillon, 2003). While Beauchamp and Childress (2009), the major propo-
nents of principlism, assert otherwise, perusal of legal rulings and cases addressed
by hospital ethics committees, finds that patient autonomy is a common nexus of
conflict. This assumption of equality among the principles also becomes question-
able when viewed in the context of some of the major controversies in bioethics in
the past 20 years. Issues such as physician assisted suicide, informed consent, the
right to die, advance directives, and patient competence for medical and financial
decision-making, all involve patient autonomy as a central value.
Non-maleficence, doing no harm, is often invoked in the controversy surrounding
physician-assisted death (PAS). Physicians who view their role as “healers,” who
must always strive to benefit patients, see assisting with death as violating the Hip-
pocratic Oath but also as conflicting with the physicians’s vocation to prevent harm
(non-malificence). Physcians who participate in expediting a patient’s death taint the

profession.
Beneficence, the moral obligation to help others, has often been fused with non-
maleficence (Beauchamp & Childress, 2009). Nearly all medical interventions have
associated risks. In making the decision about a surgical hip replacement for a 92 year
old man with heart failure, the benefits cannot be assessed without attention to the
potential harm.
The recent right-to-die case of Brittany Maynard illustrates the priority given to
autonomy. Ms. Maynard was a 29-year-old woman with a Master’s degree in edu-
cation who had previously taught in several Asian countries. In January 2014, Ms.
Maynard was diagnosed with a form of brain cancer. While surgery was performed,
the cancer returned in April of that year and she was given a prognosis of six months to
live. Shortly afterwards, Ms. Maynard moved to Oregon which has a “death with dig-
nity law” permitting physician assisted expedited death. Ms. Maynard had recently
married, was under age 30, and was described as a lively and caring young woman.
Her relative youth and frequent articulate media appearances made her different from
most patients seeking physician-assisted death. During the last months of her life,
Ms. Maynard spoke publicly about the right to die and encouraged other states to
pass legislation similar to that in Oregon (Maynard, 2014). Some commentators in
the media openly criticized Ms. Maynard for her promotion of a patient’s right to
end their own life. Within days of her death at age 29, the Catholic Church reiterated
their position that physician-assisted death was inconsistent with Church teaching
and demonstrated a disrespect for life.
During the months before her death, Ms. Maynard publicly stressed the impor-
tance of her control over the circumstances of her death. From the perspective of
nonmaleficence, Maynard did not want to compound her death with further physical
degradation and also did not want to experience an impaired quality-of-life. Maynard
and those who supported physician-assisted death also viewed it as a beneficent act–a
merciful way to avoid the prolonged death that has become common in U.S. health
care. Angell, a former editor of the New England Journal of Medicine, suggests
that recent polls of physicians indicating that the majority are against physician-
assisted death may reflect deeper motives. Angell (2014) suggests that discussions
of physician assisted death elicit a sense of helplessness when health care profession-
als confront the limits of medical science in effectively managing patient suffering
at the end-of-life.
The weakness of principlism, the absence of a system to resolve differences
between competing principles, is also one’s of its assets. These four principles can be
readily adapted to morally-based medical dilemmas arising internationally and cross
culturally (Gillon, 2003). Indeed, principlism is becoming the “preferred” approach
to medical ethics across the globe.
2.1.5 Communitarianism
Communitarianism is not a singular ethical theory. A shared element in communi-

tarianism is that morality does not develop in isolation and is only acquired through
socio-cultural interaction. Azzi (nd) describes language as the basis for shared com-
munities which generate consensually held moral standards.
Communitarianism usually reflects a dialectic between individual well-being and
that of the greater community. Individual worth cannot be viewed apart from the
socio-cultural matrix in which one lives. Additionally, individual rights tend to be
deemphasized in place of an interdependent web of responsibilities to others (Chris-
tians, 2004). Two examples of ethical models that include communitarian themes,
Ubuntu ethics from Africa and Confucian ethics from China are discussed below.
2.1.5.1 African Medical Ethics
At the outset of this brief summary, it is important to recognize that, there is no over-
arching African culture with its own set of ethical guidelines. Additionally, cultural
belief systems differ by region—Eastern, Central, Western, and Southern Africa have
distinctive groups of cultures. Overall, Africa is estimated to have between 800 and
1200 distinct cultural groups. Additionally, religion influences African health care
ethics with both Islam and Christianity becoming increasingly influential.
Some ethicists, however, describe “Pan-African” ethical models such as Ubuntu
(Chuwa, 2014). Ubuntu, which has been translated as “humanity toward others”
(Christians, 2004) is characterized by an inherent tension between the individual
and community. While everyone has basic rights and dignity, individual rights and
well-being depend. upon the well-being of the community. Human rights do not
exist outside of one’s immediate cultural community. As is the case with other non-
Western ethical traditions, there is an ongoing tension or dialectic between individual
autonomy and the well-being of the community (Chuwa, 2014). While Western
bioethics has a set of finite principles such as Kant’s’ categorical imperative or
utilitarianism’s perspective of consequentialism, these dichotomous, either-or, moral
priorities are inconsistent with ethical systems such as Ubuntu.
Instead, Ubuntu is a “both and” ethical model rather than a Western influenced
“either – or” theory (Chuwa, 2014). Individual rights are meaningless if artificially
removed from the community of which one is an interdependent part. Individual
development and well-being can only occur within a community context. A person
is a moral and ethical agent only when they give adequate attention to obligations
and responsibilities to others. In keeping with this perspective, healthcare decisions
are not person centered since the individual’s health influences the community and
vice versa. This indivudal-community dualism has led to conflicts when members of
African cultures such as the Yoruba receive healthcare in Western settings. Important
decisions about matters such as life support would not be made until others are
convened (Jegede & Adegoke, 2016).
Living wills and advance directives, while beginning to gain some recognition
in Africa, are culturally incongruent with communal agreements and/or ultimate
decisions made and communicated by an elder. However, the elder does not fill their
role as the spokesperson until after group discussion (Jegede & Adegoke, 2016). To a
Western physician, this approach may seem inefficient. However, as is the case with
many communitarian perspectives, it is to important consider the impact on important
others of a seemingly individual health care decision. While this approach may seem
paternalistic, from the perspective of principlism, communitarians typically elevate
beneficence relative to autonomy (Kasenene, 2000).
2.1.5.2 Confucianism
Confucian ethics begins with an emphasis on relationships. At the same time, how-
ever, the development of virtues is also a component. Confucian ethics are very
practical and address many of the moral dilemmas arising in everyday life. In addi-
tion to emphasizing benevolence, Confucian ethics also includes the concept of
shame. Shame has a role in the origination of morality, since during the course of
human development it can develop into yi or righteousness. While some ethicists have
suggested that Confucian ethics disavows the concept of autonomy, the emphasis on
virtues highlights the importance of individual moral character. In Confucianism, the
virtuous individual lives according to principles of right and wrong based on an inter-
nalized set of values that are maintained in the face of challenges to the virtuous life.
A central concept in Confucian ethics is Ren–best described as warm compas-
sionate feelings for others (Yang, 2015). The importance of Ren prioritizes the family
above the individual. Families cannot be reduced to groups of individuals. Indeed,
there is a concept of family as united into one—“one flesh.” The emphasis on Ren
is accompanied by the accompanying concept of filial piety, respect and responsi-
bility for one’s family—particularly for parents and grandparents. Filial piety means
that when a family member falls ill, the elder’s sickness is a collective experience.
From the Confucian perspective, the physician actually joins the family. Wang (2015)
describes how the family preserves the patient’s personal identity and integrity while
they are interacting with physicians and the medical system; “… the familial relation
is distinguished from other relations in that the family members are committed to
sharing each other’s fate from birth to death and this initial commitment is uncondi-
tional…” (Wang, 2015, p. 77).
Xiao, devotion to one’s parents, is the foundation of. Ren, which, in turn, is founded
upon both filial piety (Xiao) and brotherly love (Ti). Xiao, when in relation to parents,
includes jing or reverence for one’s mother and father. This reverence is imbued with
a strong sense of dignity. If adult children only “go through the motions” of providing
physical care in the absence of this respectful reverence, the expression of Xiao is not
genuine (Yang, 2015). Even when parents are behaving wrongly, Confucius urges
adult children to maintain their reverence and gently redirect their parents to more
appropriate behavior (Yang, 2015).
Confucianism exerts a significant influence on end-of-life care in mainland China,

Taiwan and Korea, but is significantly less influential in Japan. Buddhism and Shinto-
ism influence Japanese perspectives (Cheng et al., 2015). Even in Korea, 40% of the
population identifies as Buddhist or Christian. Additionally, Buddhism and Taoism
are influential in Taiwan. Confucianism, as a philosophy, however is also influential
in these countries (Cheng et al., 2015).
2.2 Conclusion
This chapter has been a very brief, limited overview of selected ethical theories in
medicine that are applied to end-of-life decision-making. Hopefully, it provides a set
of frameworks for analyzing ethical decision-making across nationalities and cul-
tures. When the question arises, “Is that ethical,” The response should be “Ethical
according to which philosophical theory?” While this chapter also reflects the West-
ern bias in bioethics by emphasizing ethical models developed in Europe and the
United States, these approaches, particularly principlism, are being imported into
Asia and Africa. From the perspective of respecting diversity and the richness that
alternative non-Western schools of thought provide, it is genuinely hoped that these
Western models do not supplant theories such as Confucianism and Ubuntu. In a later
chapter, focusing on the role of religion, ethical principles deriving from Christian,
Judaic and Islamic religions and their views of end-of-life care will be addressed.
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Chapter 3
A History of Physician “Truth Telling,”
Informed Consent, Legal and Religious
Perspectives on End-of-Life Care
3.1 Brief History of Physician Disclosure of Diagnostic

and Prognostic Information to Patients
While patients’ and family preferences for nondisclosure of life-threatening illness

found among contemporary Native Americans and Asian Americans may seem to
be a cultural anomaly, a brief review of physician practices and legal rulings in the
20th century suggests that disclosure of this information to patients is a relatively
recent practice. The shift from paternalistic medicine to collaborative care in which
the patient makes the ultimate decision about their treatment became evident in the
United States by the 1960s and has accelerated since that time.
While there has always been some disagreement within the medical commu-
nity about informing patients of a serious illness, there is evidence that in the early
1900s, failure to disclose as well as distortion of health information was common
in physician–patient interactions. This practice of withholding medical information
was generally motivated by paternalistic beneficence on the physician’s part. The
view that patients could not psychologically handle medical “bad news” was the
chief reason expressed by physicians for this practice.
In the 1920s, several physicians wrote articles for popular magazines in which
they openly stated that lying to patients about a serious medical condition was in
the patient’s best interest. Some physicians such as Collins (1927) went as far as to
say that being dishonest with patients was a form of compassion and encouraged his
medical colleagues to “…cultivate lying as a fine art” (p. 327).
Cabot (1918, 1926) however, argued that honesty was a preeminent value in
medicine. He was disturbed about the extent to which benevolent patient deception
had become accepted practice. Collins described instances in which patients directly
asked him for diagnostic information who, upon receipt of this information, became
very emotionally distressed. Collins (1927) implied that their resulting psychological
state hastened their death, Cabot presented an alternative perspective indicating that

30 3 A History of Physician “Truth Telling,” …
lying to patients was more likely to be harmful than beneficial. Cabot also argued
that communicating honestly with patients actually enhanced their confidence in the
physician (Cabot, 1918, 1926; Jonsen, 2007).
While physicians were debating this issue, the general public had not really reg-
istered their voice in the discussion. In the early 1950s, Dr. Otis Bowen, who went
on to become Secretary of Health, Education and Welfare in the Reagan administra-
tion, surveyed nearly 500 patients by mail. He found that nearly all of them (96.5%)
wanted to be informed of a cancer diagnosis and 88.5% wanted the physician to
inform family members (Bowen, 1955; Searight & Meredith, 2019).
The issue of deception was highlighted in a now classic New England Journal
of Medicine article by Henry Beecher. An anesthesiologist, Beecher, had reviewed
many of the classified military documents about concentration camps for the U.S.
Army. Beecher articulately criticized the utilitarian perspective that viewed harm
to an individual’s health for the greater good of scientific progress as unacceptable.
Similarly, experimenting on one patient for the possible benefit of many was a highly
questionable practice (Kopp, 1999); the ends did not justify the means. Beecher
argued that research of this type could only be conducted with complete consent of the
subject/patient involved. Beecher became well-known when in 1965, he submitted
a manuscript to the New England Journal of Medicine outlining over 20 examples
of published medical research that did not meet ethical standards (Beecher, 1966).
Not obtaining informed consent was a common problem that he cited in his review
of these studies. Some of the experiments reviewed involved children. In at least
one study, children with developmental disabilities were unknowingly exposed to
radioactive material in their morning oatmeal (Beecher, 1966; Rothman, 1982).
From the perspective of ethical theory, Beecher was clearly in the corner of Kant
and his categorical imperative. Informed consent was a fundamental principle that
should govern all medical research. He rejected the utilitarian argument that possible
harm to an individual as a research participant might lead to medical knowledge that
would benefit many patients. This utilitarian argument was one that was used by
physician–researchers who performed often gruesome experiments on Nazi concen-
tration camp inmates (Schultz, 2013).
It was not until the 1970s that the field of bioethics, dominated by professionals
with a background in philosophy, began to influence medical practice. Elizabeth
Kubler-Ross’s research on stages of patients’ response upon learning of a terminal
diagnosis, put death and dying into medical school curricula. Her work attempted to
“normalize” death as a universal developmental transition. However, even Kubler-
Ross expressed reservations about directly informing patients of a terminal condition.
When directly asked by a patient if they were going to die, Kubler-Ross encouraged
non-specific responses such as “It does look bad.” (Kubler-Ross, 1969; Kubler-Ross,
Wessler, & Avioli, 1972).
Outwardly, the change in physician norms around disclosure appeared to be well-
established by the end of the 1970s. Two studies on physician disclosure of a cancer
diagnosis separated by less than 20 years, illustrate the change in “truth telling” in
medicine. In 1961, results of a survey of U.S. oncologists indicated that over 90%
had deliberately withheld information about a cancer diagnosis at some time during
3.1 Brief History of Physician Disclosure of Diagnostic … 31
their medical career (Oken, 1961). In a survey conducted in the late 1979s, 97% of
physicians indicated that disclosure of a cancer diagnosis was their usual practice
(Novack et al., 1979).
However, anecdotal accounts from the 1970s suggested that at least in some
countries, protecting the patient from distressing medical information was still the
norm. One of the founders of the “antipsychiatry movement,” British psychiatrist R.
D. Laing (1927–1989), best known for his book, The Politics of Experience, elicited
turmoil by telling his young adult daughter of her impending death. In 1976, Susan
was hospitalized and dying of recent onset leukemia. Laing, against the wishes of
Susan’s mother, the nursing staff, Susan’s siblings, and the hematologist in charge of
her care, disclosed to her that she would soon die. In keeping with his critical stance
towards the medical establishment, Laing addressed this “conspiracy of silence” with
characteristic bluntness:
The nursing sister said, “Dr. Laing, you’re not going to tell her.” “Fuck off.” I told her. I just
told [Susan] the facts, as I knew them, and she elected to be disconnected and taken back to
her boyfriend’s flat.…She died in (her boyfriend’s) flat and she was glad she had been told.
I mean, she said that she was very glad that I told her and thanked me very much for telling
her. It divided the family, I mean murder was in the air…the boyfriend said “you’ve killed
my girl, you have destroyed her by telling her.”…He wanted her kept alive for as long as
possible in the hope against hope that the clinic might find a cure for it if she was kept alive
long enough…[The hematologist] said he’d only told two people in the last 30 years that
they are going to die, it’s against the policy of the National Health Service in Stobhill to tell
people that they’re going to die (Mullan, 2017, p. 89).
In the United States, Canada and much of Western Europe, signing the informed
consent document became a ritual before any medical procedure—including routine
blood draws. In the U.S., during the latter half of the 20th century, medical mal-
practice litigation rose significantly threatening the financial well-being of hospitals
and physician practices. “Risk management” departments became a standard part of
health care delivery systems. While there was much greater attention to obtaining
signed documents attesting to a patient’s informed consent for a medical procedure,
this consent was a contractual exercise—often devoid of any genuine education about
the procedure, including the procedure’s risks and benefits as well as alternatives
(Searight & Barbarash, 1994).
Delivering medical “bad news” is stressful for many health care providers. It is
likely to elicit strong emotion in the patient and their family which may be threatening
for the physician who may feel a sense of helplessness—particularly in cases of termi-
nal illness. This discomfort may be expressed as a hurried informational encounter or
by unhelpful, unempathic emotional detachment (Monden, Gentry, & Cox, 2016).
Recognizing that physicians experienced discomfort in these discussions, specific
training in delivery of “bad news” has become part of medical school and residency
education. In keeping with the pedagogic style of medical education, stepwise proto-
cols and acronyms have been developed to assist physicians-in-training in developing
these communication skills. For example, the ABCDE model for communicating bad
news to patients follows these steps: A—advance preparation, B—build a relationship
and establish an appropriate setting; C—communicate effectively; D—deal with the
patient’s and family’s emotional reaction; and E—encourage emotional expression

and acknowledge the patient’s and family members’ feelings (Rabow & McPhee,
1999).
Studies conducted outside the U.S. in the 1980s and 1990s did find that in countries
such as Spain, France, and Japan, patients with cancer were rarely told their diagnosis
directly and instead, the family was informed. There is evidence that this pattern is
changing but these direct disclosures of bad news are not always seen as desirable
by health care professionals or the patient’s family (Syed, Almas, Naeem, Malik,
& Muhammad, 2017). Because of its longer history, U.S. medical ethics is often
seen as the standard for other countries. A medical education from a U.S. medical
school is valued around the world and it is generally recognized internationally
that the United States has the highest level of medical technology available. It is very
common for foreign dignitaries to come to United States to undergo cancer treatment
or significant surgery. Along with exporting the technical aspects of medical care,
concepts such as informed consent, advance directives, autonomous patient decision-
making, and more recently physician–patient collaboration, are also being widely
taught in medical schools outside of the United States.
3.2 Legal Issues in End-of-Life Decision-Making: Selected

International Examples
The legalities around end-of-life care have been addressed in two primary ways.
First, some countries and states within the United States have passed legislation
that governs issues such as physician-assisted death, advance directives, and proxy
decision-making. Second, as has been discussed, end-of-life issues—particularly
when family conflict is present—have been addressed through the court system and
the rulings often stand as precedents. While many commentators and judges them-
selves have offered the opinion that the courts are not the optimal place to address
issues of this type, the inability of patients, healthcare professionals and patients’
families to resolve these issues amongst themselves bring these dilemmas to legal
attention. In examining end-of-life legislation and current laws across countries, the
most striking observation is their inconsistency. Additionally, laws that have been
passed as well as legal cases often have limited applicability to the types of issues
arising through societal changes as well as growing medical technology A review of
laws governing end-of-life care in selected countries follows.
3.2.1 United States
As noted earlier, the United States enacted the federal Patient Self-Determination
Act (PSDA) in the early 1990s. The law has certainly raised the public’s awareness
3.2 Legal Issues in End-of-Life Decision-Making … 33
of advance directives. Additionally, the absence of a record of the patient’s wishes

for continued treatment if they were to be in a comatose state was a key element in
multiple well-publicized end-of-life cases such as that of Terri Schiavo.
While there are both federal and state regulations regarding advance directives
and related issues such as physician-assisted death, much of the legal basis for actions
surrounding end-of-life care result from specific court decisions. Many scholars of
informed consent law see Schloendorff vs. Society of New York Hospital (1914)
as the legal basis for patient autonomy. In that now famous ruling, Judge Cardozo
concluded that “every human being of adult years and sound mind has the right to
determine what shall be done with his own body.” If a surgeon performs a procedure
without the patient’s explicit consent then they have engaged in battery and can be
prosecuted. As noted earlier, subsequent court decisions have centered around the
amount and clarity of information with which the patient was provided prior to a
procedure.
The precedent-setting case for complete informed consent in the U.S. was Natan-
son versus Kline. Ms. Natanson agreed to undergo cobalt radiation therapy for cancer.
The treatment resulted in damage to the patient’s chest including destruction of some
cartilage and bone. In the case, Ms. Natanson argued that the radiologist had not
adequately informed her of the risks of the treatment. While U.S. courts have occa-
sionally recognized that it may not be in the patient’s best interest to have all available
information if that would cause them to refuse treatment for a life-threatening con-
dition, those circumstances did not hold in Ms. Natanson’s situation (Searight &
Meredith, 2019). The standard of informing the patient of all foreseeable risks of
treatment as well as the probable outcomes of not undergoing treatment should be
part of obtaining informed consent.
Another example of failure to adequately inform the patient is illustrated by the
case, Kelton vs. District of Columbia. Ms. Kelton had undergone exploratory surgery
to determine why she had been unable to conceive after a previous cesarean delivery.
During the exploratory procedure, the surgeon found scarring on the fallopian tubes
that appeared consistent with a previous tubal ligation. Ms. Kelton initiated litigation
against the physician who had performed the cesarean section but was not successful
because of the one-year statute of limitations for battery.
Most healthcare policies involving specific treatments, recognition of advance
directives, processes for appointing surrogate decision-makers, and more recently,
physician-assisted death are all made at the state level. As a general rule, the federal
government and the U.S. Supreme Court have been reluctant to interfere with the
states’ right to establish health care policy. For example, as of this writing, nine
states have legalized physician-assisted death. The first state to do so in the U.S. was
Oregon which passed a “right to die” or alternatively, a “death with dignity” law.
3.2.2 Israel
Israeli health law is characterized by a combination of secular and Jewish religious

law which may, at times, contradict each other. Additionally, while these two orienta-
tions are, in theory, separate, Jewish law exerts significant influence on interpretation
and implementation of Israeli secular law.
In 1996, the Israeli parliament, the Knesset, passed a patient’s rights law. While the
law emphasized patient autonomy and included language somewhat similar to that
found in the United States, the Israeli legislation also sets specific limits on patient
autonomy. For example, a patient can be treated coercively. This forced treatment has
occurred with politically-motivated hunger strikers. The legal rationale for coerced
treatment is that life is a definite priority which supersedes individual autonomy
and dignity (Sturman, 2003). However, support for compelled treatment against the
patient’s wishes is not consistent in the Israeli medical community.
A case involving a parental request to discontinue a terminally ill child’s life
support illustrates how secular and religious law interact. The case involved a child
with Tay-Sachs disease. This genetic condition has no cure and death typically occurs
by the age of five. As the disease progresses, the child experiences more neurological
symptoms including seizures. In this case, the patient’s mother had requested that her
daughter be permitted to die and requested that medical treatment be discontinued.
Since the physician in charge of the case disagreed, the conflict went to court.
The judge in the case argued that both religious law and secular principles needed
to be considered and integrated. While noting the importance of autonomy under
secular democratic law, any type of euthanasia is not permitted. Additionally, since
an absolute value cannot be placed on human life and because of its sanctification,
there is no basis for prematurely terminating life. However, the judge recognized that
in this particular case, there would be a possible “double effect” in alleviating the
child’s pain. Thus, the levels of medication needed to satisfactorily address the child’s
pain could also serve to expedite the child’s death. Additionally, while recognizing
that some types of life support might be considered extraordinary, the highest value
was that of the child’s life and even though they were in a terminal state, the child
continued to be a sentient being. In her analysis, Sturman (2003) points out that the
importance of Jewish religious law in Israel may create inherent conflicts with laws
passed by elected representatives. Jewish law would assert that a physician’s principal
role is to continue to treat terminally ill patients until they are deceased. However,
secular law would place greater emphasis on the patient’s right to self-determination.
In Israel, the Supreme Court does not have the degree of authority as its U.S.
counterpart. One factor contributing to this state of affairs is that Israel does not have
a specific constitution (Sturman, 2003). Moreover, the Supreme Court does not have
absolute authority in interpreting and applying Israeli law. Court decisions may be
modified or overturned by the legislature.
In her detailed account of terminally ill patients in Israeli hospitals, Sturman
(2003) is struck by the fact that there are few established written policies and that
there is often considerable ambiguity about the appropriate course of action. Much
of this diversity stems from different interpretations of Jewish law by rabbinical

authorities as well as the physicians understanding of and allegiance to Jewish law.
Those healthcare providers who were most heavily influenced by Jewish law were
most likely to continue to treat even when, by medical standards, ongoing treatment
would be considered futile. Sturman (2003) describes another instance in which the
patient had on file a written order for no resuscitation. Even though the physician
on call during the night was well aware of the order, they attempted resuscitation
anyway.
However, as will be discussed later, physicians in Israel still disagree about the
definition of death. While some physicians define death as cessation of heart activity,
others use the criterion of the absence of central nervous system functioning.
3.2.3 Europe
Germany: Germany has had national regulation of advance directives since 2009
(Taupitz, 2013). German law includes living wills, powers of attorney and custodian-
ships. Custodianships are implemented for adults who unable to make decisions and
manage personal affairs such as finances. In some instances, the person appointed
as a custodian may be a relative or family member who is also durable power of
attorney. However, the courts may appoint a custodian; court appointed custodians
are actually the most common form of custodianship in Germany. Powers of attorney
are similar to those in the United States in that they typically involve someone with
whom the patient had a long-standing relationship and whom they trust. The person
named power of attorney is authorized to make decisions on behalf of the patient.
Living wills are somewhat similar to those in the United States in which the patient
draws up a written legal document that indicates acceptance or non-acceptance of
specific medical interventions if the patient is unable to give consent themselves. Of
interest, in the German version of living wills, it is the role of a custodian or power of
attorney, rather than the physician, to make the judgment about whether the patient’s
wishes for medical care are being met (Taupitz, 2013).
The German government has also examined the issue of euthanasia. Any act that is
deliberately intended to shorten the patient’s life, regardless of the patient’s wishes is
still considered a criminal act. While within Germany, there has been discussion about
active euthanasia as a possibility, the lingering historical impact of Nazi atrocities in
which euthanasia was deliberately practiced on segments of the population such as
those of Jewish background, appears to be a factor in limiting further legal pursuit
of this option.
German legal authorities have also examined the issue of not initiating or with-
drawing life-support. In German law, this life support includes artificial feeding or
hydration. However, there has been some ambiguity about this issue. In a 2010 case,
a 77-year-old woman who was in a nursing home had reportedly been in a persistent
vegetative state for five years and was being fed through a stomach tube. It was
reported that earlier in her life, the patient had indicated to her children that she did
not want to be kept alive in such a state. The physician concluded that continuing
artificial feeding was not medically appropriate (Zwick, 2013). The daughter, who
was the mother’s surrogate, agreed with the decision. However, the supervisory staff
at the nursing home overrode the daughter’s and physicians plan and continued the
feeding. The daughter contacted an attorney who reportedly advised her to remove
the feeding tube which she did. However, nursing home staff reinserted the tube. The
patient died two weeks later. While the daughter was not found guilty, the attorney
was convicted of manslaughter.
Spain: In Spain, regulations regarding advance directives are somewhat confusing
which may partially explain the reported low rate of advance directive completion
(Simon-Lorda, Tamayo-Velazquez, & Barrio-Cantalejo, 2008). The organization of
Spanish government may account for some of this confusion. While there is a national
government, Spain is also made up of 17 autonomous regional communities and two
cities. Similar to U.S. states, these entities often have the authority to develop regula-
tions around healthcare issues. In some instances, federal and community regulations
may not be consistent.
There have been several Spanish cases involving members of the Jehovah’s Wit-
ness Church whose written advance directives clearly prohibited blood transfusion
as in keeping with the tenets of this faith. In at least one of these instances, the judge
overruled the patient’s advance directive and ordered medical staff to proceed with
the transfusion.
While specifying that patient informed consent is important for a valid advance
directive, Spanish law also supports a person’s right to not be informed of their
condition and its prognosis. As is the case with other countries in Mediterranean
Europe, physicians are somewhat less likely to disclose medical “bad news” (Gysels
et al., 2012). In Spain, there is a clear distinction between an advance directive as
a written document and a proxy decision-maker. Patients are encouraged to have a
written values history which would include issues such as their perspectives on pain,
important family relationships, importance of personal autonomy, religious beliefs
and healthcare preferences. This document may be used to guide the decision-making
process. It is also recommended that this values history be conveyed to physicians
and relatives as well as any official healthcare proxy.
England: Advance care documents are supported in England and Wales. In essence,
these documents list treatments that would not be acceptable if the individual became
incompetent and unable to express their wishes directly. The emphasis has been on
reducing futile treatment. Treatment refusals are addressed in The Mental Capacity
Act of 2005. The Act also specifies that physicians will not be held liable for restricting
treatment as specified by the patient’s advance refusal document (Lewis, 2012).
Case law in England has focused on withholding and withdrawing treatment in sit-
uations in which in the physician’s opinion, the treatment was not in the patient’s
best interests. The affirmative right of physicians to refuse seemingly futile treat-
ment in the United Kingdom is interesting in the context of the National Health
Service (NHS). NHS policies have been criticized by some for being guided by
utilitarianism—specifically directing medical resources to those who can would be

more likely to benefit based on factors such as age and overall health status.
The principle of double effect has also been supported by British courts such that
physicians will not be held liable if they provide sedation or pain medication to make
the patient comfortable even though it could also likely hasten the patient’s death. If
the purpose was to deliberately cause the patient’s death, the physician would then
be guilty of a crime.
Britain has been particularly reluctant to permit euthanasia and physician-assisted
suicide (NHS, 2019). Indeed, in one highly publicized case, a husband was prosecuted
for accompanying his wife to Switzerland for physician assisted death which is legal
in that country. For example, in 2016, British authorities suggested that the wife of a
65-year-old man with multiple sclerosis could be prosecuted for accompanying him
to Switzerland where he could receive legal physician assistance in dying through
the organization, Dignitas (Finnigan, 2016).
3.2.4 India
Like many developing countries, India does not yet have the medical resources to
regularly maintain patients on extended life support. One relevant statute is “Medical
Treatment of Terminally Ill Patients” (Protection of Patients and Medical Practition-
ers Bill). Suicide was decriminalized by statute in India in 2017 after three publicized
legal cases addressed the issue without a clear conclusion (Rao, Roy, & Tatiya, 2018).
In a “right to die” case, a nurse in a Mumbai hospital had, in the early 1970s, been
assaulted and strangled resulting in serious brain damage. In a persistent vegetative
state, she had been residing in the hospital for 36 years. A journalist filed a petition
with the courts to end the patient’s “suffering “through cessation of feeding. The staff
of the hospital who had taken care of the patient for the ensuing 36 years, opposed
withdrawal of life support. However, the court, while not permitting withdrawal of
support for the patient, did establish guidelines for passive euthanasia and indicated
that at present, there was no support for active euthanasia unless appropriate legis-
lation was passed (Rao, Roy, & Tatiya, 2018).
3.3 Religion and the End of Life
Religion is a major moral force throughout the world. Particularly when addressing
death, religious belief systems create meaning at the end of a patient’s life. While
this chapter’s description of religion and ethics is not exhaustive by any means, it
will, hopefully, provide information about how some of the world’s religions view
end-of-life care. There actually may be more similarities between religions and how
they address end-of-life issues than shared ground between secular models of ethics
rooted in philosophy.
Medical ethics in the West is generally discussed from a secular perspective.

However, it is important to recognize that the world’s religions are founded upon
specific moral principles. In most religions, autonomy is recognized but one’s life
is simultaneously directed by a higher power. This modified autotomy has been
termed “theonomy” (Greenberger, 2015). Importantly, rather than addressing moral
issues arising in daily life through introspection or discussions with family members
or friends, guidance is found in the Scriptures and holy writings of the world’s
religions (Greenberger, 2015). What one “feels” or thinks is moral is not adequate
justification—particularly for serious decisions such as maintaining life support.
Instead, the tenets of the individual’s religion should be the guide.
Jonsen (2003) states that in the United States, religion exerted considerable influ-
ence on American physicians through the early 1900s. However, with the rise in
scientism, secularism diminished religion’s role in medicine. He states that “by mid-
century American medicine had become officially agnostic” (Jonsen, 2003, p. 92).
However, this agnosticism is certainly not true around the world and in countries
such as Israel, Pakistan and much of the Middle East, end-of-life decisions cannot
be made without reference to religion.
Even though the United States has become increasingly secular, Christianity has
influenced legislation on topics such as abortion and physician-assisted suicide. In
the Blackhall et al. (1995) study, religion influenced European Americans’ attitudes
towards end of life care with Protestants more likely than non-Protestants to believe
that patients should be directly informed of a terminal diagnosis (81 vs. 61%) and
with Protestants more likely to believe that the patient should be the primary decision-
maker (73 vs. 59%). In the Korean American group, Buddhists were less likely to
believe that the patient should be told their prognosis (Blackhall et al., 1995).
3.3.1 Islam
An overarching duty of Muslims is to submit completely to Allah or God. Islam,

through the Sharia or religious laws, have a highly systematized set of rules that
govern nearly all aspects of life (Al-Bar & Chamsi-Pasha, 2015). The primary basis
of Islamic legal opinion is The Quran. Another valuable source is The Sunnah,
providing a description of the life of the Prophet Mohammed and his teachings. If
an issue cannot seem to be addressed by either of these sources, Islamic scholars or
judges are sought for their opinion. However, these judgments are based on reasoning
from the Quran or The Sunnah (Al-Bar & Chamsi-Pasha, 2015). For example, since
it is not explicitly addressed by either the Quran or The Sunnah, the opinion of
Islamic scholars has been necessary in addressing organ transplantation.
In many Islamic countries such as Pakistan, secular law is informed by Islam.
For example, the Constitution of Pakistan states that the country cannot enact a
statute considered “repugnant” to the principles of Islam (Moazam, 2000, p. 29). The
Islamic Code of Medical Ethics emphasizes the duties and responsibilities as well
as the sacred role of the physician while minimizing attention to patient autonomy.
3.3 Religion and the End of Life 39
Patients do not have the right to request medical assistance in prematurely ending
their life. However, The Islamic Code of Medical Ethics does describe informed
consent but also states clearly that in a life-threatening situation, the physician can
act without formal consent. While referencing the patient’s right to know about
their illness, The Code encourages the physician to use terminology that would be
minimally distressing to the patient (Moazam, 2000). The physician is a revered
figure in the Islamic tradition and healing is a religious act. Some scholars describe
the role of physician in Islam as second only to that of Imams and Islamic scholars.
The practice of medicine is an act of worship with the physician being an instrument
of God (Moazam, 2000). Somewhat similar to the Jewish tradition, from the patient’s
perspective, illness is something to be accepted and may be a form of atonement.
Given that Allah has given the gift of life, only Allah can take it away. As a result,
any type of euthanasia or active assistance in dying is forbidden.
The Prophet clearly states that God looks favorably upon those who love their
family. The idea of having to develop a contract such as an advance directive is not
something that would be even considered (Moazam, 2000) since family members
would believe that a loved one’s death should not occur prematurely. As noted above,
the physician, as a respected healer in Islamic countries, is forbidden from termination
of life. Even if the patient requests assistance in dying, the physician should never
sanction an act that conflicts with Allah’s directives (Nikookar & Sooteh, 2014).
However, while prevention of unnecessary premature death is a physician’s duty,
when it is clear that the patient will die regardless of any intervention and that no
treatment will reverse that imminent end point, treatments may be withheld. How-
ever, hastening death is generally seen as forbidden. Similarly, nutritional support
should continue to be provided even in patients who are terminally ill and nutrition
should never be discontinued as a means of expediting a predicted death. Withholding
nutrition would be seen as deliberate starvation which is a criminal act according to
Islamic law. However, when death is a clearly predictable and irreversible endpoint,
withdrawal of life support may be considered appropriate (Al-Bar & Chamsi-Pasha,
2015).
3.3.2 Judaism
Judaism, similar to most of the world’s religions, has ethical principles that unite
believers but also encompass multiple interpretations of Jewish law and accom-
panying practices. However, these principles are rooted in the Torah and Talmud.
Preservation of human life is a fundamental principle in the Jewish faith. The pur-
pose of one’s existence or the quality of life do not over-ride or modify the basic
respect for all human life (Bleich, 1981, 2006). Questions of whether a life is worth
living can only be answered by God. Bleich (1981, 2006) argues that Judaism’s
emphasis on human life as inherently valuable surpasses that of Christianity. Kant’s
moral absolutes certainly resonate with this perspective. In Israel, both secular law
and Jewish law impact health care decisions. However, within rabbinic law, there are
theological disagreements about maintaining life-support and what constitutes death.
Sturman (2003) notes that many hospitals in Israel do not have formal policies on
end-of-life issues. For example, written do not resuscitate orders are often not avail-
able as forms for the medical team to follow. One suggested reason for the absence
of consistent policy is that the level of disagreement among health care professionals
and rabbinical authorities can be pronounced (Sturman, 2003).
Suffering is part of life and it is never considered to be “needless” or an experience
to be avoided. A life of pain and suffering is still considered to be superior to death.
Indeed, the gift of life, which only God can provide, outweighs the impact of any
tribulations that the patient may endure—even as death approaches. Moreover, given
life’s sacred quality, physicians have an obligation to be a good steward of this
gift and to preserve life. Given this perspective, it is understandable that in Jewish
law, abortion is considered immoral. Similarly, any medical intervention that would
artificially shorten life, even by a day, would be an insult to God. A close corollary
is that one has a strong obligation to act to save the life of a fellow human being.
Talmudic literature includes narratives of the necessity of coming to the aid of another
such as a person who is near drowning (Bleich, 1981, 2006). The life of a patient
in a persistent vegetative state, may have a purpose and should not be extinguished
intentionally or prematurely. This purpose may be to teach others sensitivity and
compassion (Greenberger, 2015). From the perspective of principlism, Jewish ethics
clearly prioritizes beneficence and nonmaleficence over autonomy.
However, if death is believed to occur in the foreseeable future, any obstacle
interfering with an overall certain dying process may be removed. A key issue that
has arisen with respect to organ transplantation is the criterion for death. Brain death
may be considered a definition from the point of view of secular law. However,
death from the perspective of Jewish law is the cessation of heart activity. While an
absence of brainstem activity is a legal definition for death in Israel, the law allows for
families to request continued treatment until cessation of heart activity. As Jotkowitz,
Agbaria, and Glick (2017) note, this can lead to the unusual situation of having a
patient who is still receiving treatment in an intensive care unit while also having a
signed death certificate (Sturman, 2003).
3.3.3 Christianity
Christianity is founded upon the belief that God’s son, Jesus, came to earth to redeem
humankind. Adherence to the law (largely the Jewish law of the Old Testament) had
not been adequate to prevent humankind from straying into sinfulness. Jesus, through
his teachings during the course of his lifetime, challenged how Jewish law was being
interpreted and how it influenced daily life. Jesus’ death is seen as the ultimate
atonement and sacrifice for the sinfulness of humankind. His resurrection from the
3.3 Religion and the End of Life 41
dead demonstrates his divinity while also holding out the promise of life after death
for Christians.
Having faith in God and believing that Jesus was both God and Man are central
tenets of Christianity. The Bible’s New Testament, includes many accounts of Jesus,
as God incarnate, being able to work multiple miracles. These included curing the
sick, sometimes by laying hands on them and at other times by simply by giving a
command from a distance. There are three instances in the New Testament in which
Jesus, through his commands, reversed death. In the account of Jairus’ 12-year-old
daughter Jesus arrives at the home finding that the girl has recently died. However,
he tells those already in mourning that the girl is not dead; she is only sleeping. Jesus
walks into the girl’s room, takes her by the hand and says “Get up” and she does.
In another instance, a funeral is already taking place for the son of a widow, Jesus
touches the funeral bier and says “Young man get up” and the young man returns
to life. Finally, in the case of Lazarus, Jesus’ friend and the brother of Mary and
Martha, Jesus resurrects him from the tomb. Jesus stands outside of the tomb and
in a loud voice says “Lazarus come out!” Lazarus comes out of the tomb bound in
burial wrappings.
These miracles in which persons were dead or near death and return back to a
normal life are likely to influence Christians’ views on issues such as life support and
advance directives. In particular, in many African-American churches, the message
of God’s miracles reflects the superiority of God’s work over medical science.
Even in situations involving comatose patients where the likelihood of “awak-
ening” becomes less and less likely as time passes, the fact that this outcome has
occurred on rare occasions may be seen as consistent with “the working of God’s
hands.” This message has been used to argue against removing life-support in cases
such as that of Nancy Cruzan and Terri Schiavo.
Writing from a secular perspective, Pence (2016) notes that the fact that individ-
uals do come out of multiyear comas “… Changes the prognosis from certainty to
probability….” The emotional weight changes when a patient has a ‘tiny’ chance
(Pence, 2016, p. 39). Several examples include Terry Wallace who emerged from a
19-year coma, following an auto accident and Patricia Ingle who went into a “locked
in” like state and was unable to speak swallow or move but came back to full con-
sciousness 16 years later (Pence, 2016).
The Catholic Church has addressed the issue of life support. Pope Pius XII in
the late 1950s indicated that if there was no reasonable likelihood of recovery, indi-
viduals should not be kept alive by extraordinary mean. Ethicists, writing from a
Roman Catholic perspective have espoused different perspectives on providing arti-
ficial nutrition for those in persistent vegetative states. The view that all life is sacred,
even unconscious life, leads very directly to the conclusion that artificial nutrition,
which is not considered a treatment but a fundamental human right, should be contin-
ued. However, an alternative perspective suggests that the absence of consciousness
removes spirituality from one’s existence. The absence of a spiritual dimension to
human life raises the question about whether this is a genuine human existence. In
these circumstances, some discretion around the use of artificial nutrition should be
considered (Greenberger, 2015; Ravitsky & Prawer, 2008).
When death is imminently unavoidable, it is acceptable for the physician to refuse

to provide treatment that will only lengthen and add discomfort to the process of one’s
demise. Other Christian denominations are in agreement with the Roman Catholic
Church that terminating treatments which will be futile is acceptable. It is however
recognized that pain reduction is acceptable even when in some patients it may
result in a more rapid death—the law of double effect (Bülow, Sprung, Reinhart,
et al., 2008).
3.4 Conclusion
Legal cases addressing end-of-life issues have principally centered around the
patient’s or patient’s families right to continue or cease life support. These more
recent cases are extrapolations from earlier rulings that center around the principle
that patients should be completely informed before they consent to a medical pro-
cedure such as surgery. More recently, the courts have had to address situations in
which there is disagreement within the scientific community such as the status of
persistent vegetative states and the probability of patient recovery when they are
comatose.
Most Western countries have developed legal responses to these questions. The
concept of advance directives and proxy decision-makers reflects the contractual
nature of the legal system. At the same time, it becomes growingly evident that the
legal system has limits in addressing existential questions such as the quality of one’s
life and even what constitutes life. Religious doctrines do address these issues. As
a general rule, Judaism, Islam and Christianity share a respect for life. While there
is certainly variability within a religion, there is a shared view that life has inherent
value and its outcome is not in the hands of human science.
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Chapter 4
Whether and How to Inform Patients
of “Bad News,” Family Dynamics
at the End of Life
4.1 Whether and How to Tell: Physician—Patient

Communication
Telling patients the truth about a life-threatening condition is less common outside
of the United States. There is evidence that direct disclosure of medical “bad news”
is more likely to occur in Northern, rather than Southern, Europe and probably more
common in Europe overall than in many Asian countries (Blank, 2011; Searight
& Gafford, 2005). Even in the United States, family requests for nondisclosure of
serious medical conditions to patients are relatively common (McCabe, Wood, &
Goldberg, 2010; Wang, Peng, Guo, & Su, 2013). Historically, physician disclosure
of a cancer diagnosis was with vague terms such as “mass” or “growth” (Oken, 1961),
most research suggests that contemporary U.S. physicians have become more direct
with the patients.
Currently in the U.S., while diagnoses and treatment options are commonly
disclosed, physicians are disinclined to make specific prognoses and often hedge
prognostic information with qualifiers (Zier, Burack, Micco, et al., 2008). Research
suggests that patients do not expect physicians to be precise in predicting patient
outcomes. Patients recognize that the physician is making judgments in a realm of
uncertainty and do not appear to judge physicians harshly for inaccurate prognos-
tication when done in good faith and conveyed with sensitivity (Zier et al., 2009).
Even when prognoses are ambiguous, a physician’s honest, yet sensitive, description
of likely outcomes prepares family members for the very real possibility of a loved
one’s death (Zier et al., 2009). Prognosticating the realistic death of a family member
is likely to be associated with better psychological adjustment. There are suggestions
that sudden, as opposed to anticipated, deaths are associated with greater levels of
psychiatric disturbance (Zier et al., 2008).

46 4 Whether and How to Inform Patients …
4.2 Cross Cultural Encounters in the U.S. and Canada:

Interpreter Mediated Communication
Candib (2002) describes a case in which a U.S. physician, seeing a colleague’s hos-
pitalized Russian immigrant patient for the first time, directly disclosed a pancreatic
cancer diagnosis. The patient’s usual doctor was a primary care physician of Russian
background who had instructed the hospital team not to tell the patient of his diagno-
sis. The patient’s primary physician indicated that she would contact the family and
they would make the decisions about the patient’s care. This approach to informing
the patent is still relatively common in Eastern Europe (Searight & Gafford, 2005).
However, the hospital physician covering for his colleague, strongly believed that
patients should be informed of their medical condition and would appreciate the
information. The physician contacted the ATT language line and used their inter-
preter services to tell the patient of his diagnosis. The patient became angry and told
the physician that he did not want to talk further and accused the doctor of taking
away his hope (Candib, 2002).
With approximately 12–15% of the US population speaking a language other
than English at home with a comparable figure of 6–8% for the United Kingdom
(Searight, 2017, 2019), the likelihood of having a health care encounter mediated
by a foreign language interpreter is relatively high. Patients from cultures in which
it is common not to disclose serious medical information to patients—particularly
older parents—may wish to have a family member serve as the interpreter. While this
may seem intuitively helpful and is common, family members are not considered to
be appropriate for filling this role in health care settings (Searight, 2017). Having a
family member serve as an interpreter is explicitly forbidden by the Affordable Care
Act (Searight, 2017). There are a number of issues that arise when family members
serve in this role. A common problem is that family members may be bilingual but
their skills in the second language may not extend to specialized areas such as health
care. As a result, family members as well as untrained, ad hoc, interpreters may
unintentionally misinterpret or omit clinically relevant information (Searight, 2017).
As has been noted previously, in Western countries it is legally required that the
patient give informed consent to medical treatment. However, to give meaningful
informed consent, the patient must be aware of their condition. There have been
multiple situations reported in which family members were not willing to interpret
physician provided information about cancer or a life threatening diagnosis. In cul-
tures in which there are strong prohibitions about talking about death, such as in some
Native American communities, family interpreters and some nonfamily interpreters
may refuse to interpret health care professionals’ verbal information regarding mor-
tality and treatment options at the end of life (Ho, 2008). Another issue in cultures
in which there is significant deference shown to elders is that having adult children
interpret for a parent or grandparent does not respect traditional hierarchies (Searight
& Searight, 2009).
Professional interpreters report significant moral dilemmas when physicians com-
municate directly to the patient about their diagnosis and prognosis and expect the
4.2 Cross Cultural Encounters in the U.S. and Canada … 47
interpreter to convey the information verbatim. This directive creates distress for the
interpreter when they are from a culture in which this information is not typically
explicitly conveyed to patients (Hordyk, MacDonald, & Brassard, 2017). This situ-
ation creates a genuine conflict for the interpreter between their professional health
care role and their commitment to their culture.
Among the Inuit in northern Québec and Nunavut, conveying serious health infor-
mation has traditionally been the task of community elders. These elders and local
leaders are viewed as interpersonally wise and communicate information in ways
that reflect sensitivity to the patient and family members’ emotional well-being. For
interpreters working in medical clinics in these regions in which tribal elders held this
important role, interpreters often felt that that they were not the appropriate person
to convey this information (Hordyk et al., 2017).
Research on Inuit health care has noted that in hospital settings in which inter-
preters were less likely to have personal relationships with patients and their extended
families, a direct communication approach was more likely. However, when convey-
ing news to local community members, interpreters were less direct. Hordyk and
colleagues (2017) found that in these situations, interpreters were less likely to con-
vey a specific prognosis but instead, tell the patient that only God would know when
death would occur. Interpreters also indicated that they would add their own mes-
sages of hope to the physician’s prognosis by saying things like “…you can lengthen
the time, you can still have a livable, functional life even though you are given that
time… Don’t have to be stuck in bed.” (Hordyk et al., 2017). Trying to maintain the
patient’s hope while doing their job as a healthcare professional, was often described
as a lonely and distressing experience for these indigenous interpreters (Hordyk et al.,
2017).
Similar conflicts have been described with interpreters working with Korean
American families. Adult children, protective of their mother or father, would specif-
ically tell the interpreter not to interpret diagnostic and prognostic information. This
sets up an ethical dilemma for the interpreter who, professionally, has a responsibil-
ity to interpret everything the physician and patient say during the encounter. In a
case involving a Vietnamese man with end-stage liver disease, a medical assistant
in the physician’s office served as the interpreter (Candib, 2002). At each visit, the
interpreter explained to the physician that it was not appropriate or helpful to tell
the patient of their diagnosis. The interpreter told the health care team that if she
was mandated to translate the patient’s diagnosis and prognosis, she would not do
it. According to Candib (2002), the patient died having never been directly told of
their medical condition.
4.2.1 Culture and Communication at the End of Life
In some European countries, particularly in the Mediterranean region, as well as in

former East Bloc countries, there has often been a long standing practice of nondis-
closure among physicians. Among a sample of Italians in Italy, fewer than half
indicated that patients should always be informed of their diagnosis (Grasi et al.,
2000; Surbone, Ritossa, & Spagnolo, 2004). However, only one out of four physi-
cians indicated that they typically disclose this type of information to patients in their
own practice. Among the sample of 675 doctors, nearly 1/3 indicated that patients did
not want to know the truth about a serious medical condition. Surgeons were more
likely to disclose and general practitioners were least likely with older physicians less
likely to disclose the diagnosis than younger physicians (Grasi et al., 2000). While
available information is somewhat dated, there does appear to be a greater likelihood
that information is withheld from patients in southern Europe including Spain and
Greece (Georgaki, Kalaidopoulou, Liarmakopoulos, & Mystakidou, 2002) as well
as Italy, compared with northern Europe.
The continued diversity of attitudes and practices to informing patients, as well
as changes in perspectives on this issue by age, are illustrated by a study conducted
in Poland. Among a large group of over 200 physicians, 40% indicated that patients
should be informed directly of an incurable condition with 59% of medical stu-
dents agreeing to that position. Among practicing Polish physicians in this sample,
38% indicated that partially informing patients was appropriate with a comparable
figure of 29% for medical students. Finally, 19% of physicians indicated that dis-
closure depended upon the patient’s mental condition with 11% of medical students
also endorsing this position (Lepper, Majkowicz, & Forycka, 2013).
However, it is reported that in Germany, where medical care is covered by national
insurance, disclosure of diagnosis to the patient is required by law. Germany has also
been mandating advance directives (Chattopadhyay & Simon, 2008). The availability
of treatment as well as palliative care and its relationship to physician disclosures
has not been well examined. It does seem logical, however that in countries in which
life-prolonging measures and up-to-date palliative care are unavailable, there might
be reluctance to disclose this information to patients or their families.
China has historically been a country in which patients were not informed of a life-
threatening condition. While Chinese physicians have been moving more towards a
Western model of informed consent, discretion around disclosure is still permitted
(Wang et al., 2013). A law that went into effect in 2010 in China (Law of Medi-
cal Practitioners) holds that when disclosing diagnostic and treatment information,
healthcare professionals have a responsibility to avoid actions that might adversely
impact patients. Under Chinese tort law, the physician is held legally liable for any
patient harm resulting from the disclosure (Wang et al., 2013).
Other studies conducted in China have found somewhat contradictory preferences.
Both Chinese nurses and physicians generally report that the patient should not be
informed of serious medical illness (Nie, 2013). At the same time, when nurses are
asked to indicate what they would want if they were in the patient’s situation they
indicated that they would like to know their own diagnosis. At the same time however,
nurses indicated they were reluctant to share this information with patients. Nearly
75% of this large sample of nurses indicated that they would deliberately withhold
a cancer diagnosis from a patient. However, 90% of these nurses indicated that if
they were in the role of patient, they would like this information (Nie, 2013). This
particular sample of Chinese nurses was even reluctant to inform family members
about a loved one’s terminal condition-only 2.5% indicated they would inform family
4.2 Cross Cultural Encounters in the U.S. and Canada … 49
members immediately with 69% stating that they would eventually inform the family
and 28% stating that they would never inform the patient’s relatives of a terminal
diagnosis (Nie, 2013). Comparable findings emerge in a study of oncologists in
China with 60% indicating that terminally ill patients should not be informed of
their condition (Jiang, Liu, Li, Huang, et al., 2007).
In the Middle East, there is still evidence of a pattern of withholding information
from patients and instead, discussing diagnostic and prognostic information with
close relatives. For example, in Saudi Arabia, 75% of physicians reported discussing
information with family members instead of patients and in Kuwait, close to 80%
of physicians indicated that, at the family’s request, the physician would withhold
diagnostic information from the patient (Sarafis, Tsounis, Malliarou, & Lahana,
2014). In Iran, close to half of terminally ill cancer patients were unaware of their
diagnosis (Shahidi, 2010).
Illustrating the shift in both medical education as well as clinical practice, a survey
of physicians in a specialized cancer center in Saudi Arabia indicated that over 80%
reported being comfortable with disclosing “bad news” (Alshammary et al., 2017).
While 86% indicated that they believed that patients should be directly informed of
cancer, only 30% indicated they would do so if it was against the family’s wishes.
Also, 61% indicated that they would only give details to patients about the cancer
condition if specifically asked. Again, indicating changes in both attitude in the
medical community as well as in medical education, 70% of the sample reported
receiving specific training in disclosure of medical bad news (Alshammary et al.,
2017).
4.3 Family Dynamics
4.3.1 The Individual and Their Family
The family is the primary institution that mediates between the larger society, culture,
and the individual. Social norms, religion, and patterns of relating to others are all
lessons learned through family life (McGoldrick, Giordano, & Garcia-Preto, 2005).
The author has taught university students in China as well as Chinese nursing
and medical students. During my first experience teaching in China, I was teaching
developmental psychology with a focus on emerging adulthood. I asked the class of
about 30 female students, “What makes someone an adult?” Typical responses from
American students are that they are self-supporting financially and finished with their
education. I pointed out to the Chinese students that in the United States having a
child often was an indicator that one was an adult. The class seemed confused and I
went on to elaborate that 30–40% of recent births in the United States were to single
women. The class seemed genuinely astounded—it was almost as if they were saying
to me “How can you have a child and not be married?”
It was useful for me to have this experience before teaching a medical ethics
course to Chinese nursing and medical students. Rather than opening the class with a
discussion of ethical theories, I spent the first few class periods describing American
families. The students were very surprised about common family patterns in the
United States such as cohabitation between unmarried partners, single women having
children, as well as the high divorce and remarriage rate. I also presented them with
data about the number of relationships engaged in by young adults before marriage.
In the U.S., among those 20–24 years old, slightly more than 35% of females and
almost 40% of males report having more than five sexual partners (Haderxhanaj,
Leichliter, Aral, & Chesson, 2014). Among undergraduate women in China, only
18% reported having had sexual intercourse with approximately 5% reporting more
than one sexual partner (Yan et al., 2009). This difference in perspectives about
intimate relationships is part of a larger cultural emphasis on individualism in the
United States and relationships often having secondary importance.
In Confucian and Islamic medical ethics, the family is the locus of important
decisions about its members. Additionally, individual actions directly reflect upon
the family and vice versa. For example, in many traditional societies, a young woman
who has sex outside of marriage not only disgraces herself but her entire family.
Similarly, if a family member has a psychiatric illness, the individual’s mental health
condition is often kept secret by the family since public knowledge would make
young adult family members less desirable as marriage partners. In these cultures,
marriage is not seen as the uniting of two individuals but as the merging of two
extended families.
However, in the U.S., the family emphasis, while present, is modified by indi-
vidualism. Both Cherlin (2009) and Cherry (2015) highlight the contradictions in
the United States between the view that families are desirable and should be pre-
served and the emphasis on personal identity and self-development. Cherry (2015),
in reviewing family demographics in the U.S. and Western Europe, argues that the
influence of the family is in decline. The importance of autonomy and informed
consent as an individual decision pushes the family to the sidelines: “The burden of
proof is placed on the family to demonstrate that it acts with legitimate authority…”
(Cherry, 2015, p. 43).
Cherry (2015) reviews a good deal of research indicating that the family with its
long history of authority over individuals and as a valued social entity unto itself,
is currently being challenged. Families demonstrate significant benefits both for
children as well as for spouses. When taken as a group, children from divorced or
single parent households are likely to exhibit more mental health issues, alcohol use
and more likely to have their own marriages end in divorce. Females raised in single
parent homes are much more likely to have a child while in high school. Additionally,
married couples tend to have better mental and physical health (Cherry, 2015).
However, particularly in Western societies, the traditional family is under siege. In
the U.S., approximately 30% of first births occur to unmarried women. In Sweden,
more than half of first births occur to non-married, cohabiting couples (Cherlin,
2009).
Cherlin (2009) notes that for Americans, there is a tension between marriage and
family and commitment to individual development. Marriage, divorce, remarriage,
and marital cohabitation are relatively common occurrences in Western countries.
4.3 Family Dynamics 51
Americans “partner, partner, and [they] partner faster than residents of any other
Western country” (Cherlin, 2009). By age 40, it is estimated that over 80% of Amer-
ican women will have been married. However, five years into their first marriage,
20% of Americans had separated or divorced. Cohabiting relationships are even more
fragile with over half of them ending within five years. Among children in the United
States, 40% will see a marital or parental cohabitation breakup by the time they are
15 years of age. In the U.S. up to half of all children who experience the end of their
parents’ marriage, experience a new partner with their parent within three years.
Growing up in alternative family structures such as a cohabiting or remarried family
is associated with greater risk of abuse as well as adolescents who are more likely to
run away from home.
With this history of instability, it is certainly understandable that commitment to
individual family members and particularly children would be diminished. Addition-
ally, from a child’s perspective, the array of adult parent like figures in their lives
suggest that they will be living with parent like figures who are transient and may
not have the child’s best interest at heart.
By age 40, 80% of Hispanic women, 75% of Native American women and 90%
of Whites, but fewer than two thirds of African-American women, are married. This
pattern of decline in marriage among African-American women began in the 1960s
(Raley, Sweeney, & Wondra, 2015) Hispanic and African Americans are more likely
to end relationships with permanent separation versus divorce (Amato, 2010). In the
absence of advance directives, this pattern of entering into a new relationship without
legally terminating a previous one, may lead to conflicts between a current partner
and an ex-spouse from whom the patient never formally divorced. Particularly when
an estranged spouse is the patient’s life insurance beneficiary, questions are raised
when, in most states, the legal decision-maker (the estranged, but still legal husband
or wife) is discouraging aggressive treatment or is seeking termination of life support.
In the U.S., particularly among those of Northern European background, mar-
riages are more likely to be viewed as contracts. If one party does not hold up their
end of the bargain, dissolution of the contract is understandable. This contractual
model holds for relationships such as marriage. One of the best examples of this is
the pre-nuptial agreement in which a future spouse protects their individual economic
assets acquired prior to marriage. A frequent legal conflict occurring at the death of
a parent and spouse is that between the deceased’s children by a previous marriage
and the deceased’s most recent spouse. While again, probably not the optimal venue
for resolving family issues, conflicts of this type often wind up in the courts. With
a legal system based in individualism, court rulings reduce these collective conflicts
to questions that are in favor or against an individual.
With families demonstrating patterns of instability and limited commitment to its
members, the emphasis in U.S. medical ethics and law on individually based decision-
making is understandable. Even in situations involving married couples, medical
information cannot be directly shared. Each partner, despite their married status,
maintains separate and private medical information. Indeed, the recently enacted
U.S. Health Insurance Portability and Accountability Act has been characterized as
assuming that people want to keep information from their families (Cherry, 2015).
Cherry (2015) notes that in the West, the family is being further eroded by the
power given to minors. He notes that, in the health care system, children are becom-
ing “… self-possessed moral agents who undertake their own moral decision-making
as soon as possible and as far as feasible” (Cherry, 2015, p. 53). Research ethics
involving minors have been moving progressively in the direction of children hav-
ing independent decisional authority, apart from their parents, to participate or not
participate in healthcare studies. Additionally, many states such as California may
not require parental consent for adolescents to obtain birth control or terminate a
pregnancy (Cherry, 2015).
In 2014, Belgium approved an extension to their existing euthanasia law to permit
physician-assisted assisted death for children. The clinical implementation of PAS for
children is reportedly confined to cases in which children are “experiencing constant
and unbearable suffering.” While parental input is sought, in order for PAS to be
implemented, the pediatric patient must demonstrate “the capacity for discernment”
and recognize that choosing the intervention will end their life. The Belgian law
highlights the role of the individual child as an independent decision-maker apart
from their parents (Siegel et al., 2014). Children, in Belgium, have been authorized to
independently seek physician assisted death. It is questionable whether the individual
focus, particularly when it comes to minors, is actually in the individual child’s best
interests.
Cherry (2015) concludes that “…pressure has been brought to bear on parents
and families through law and institutional policy, focusing among other concerns
on separating children from the sphere of parental and familial authority as well as
spouses from each other’s authority” (p. 55). As has been noted at several points,
in the U.S., in particular, conflicts around healthcare that fundamentally involve
family relationships, are being addressed by the court. The Western legal system is
individually focused and does not recognize families as coherent units for decision-
making. Judges themselves have said that the courts are probably not the best place
to resolve many healthcare issues but in a culture focusing on individual rights, the
involvement of the legal system is understandable.
An example of how the legal system becomes involved in family matters is the
Terri Schiavo case. In February, 1990, Ms. Schiavo, at age 26, experienced cardiac
arrest at her home. She was resuscitated but was left comatose. After approximately
two months, her diagnosis was described as a persistent vegetative state. For three
years, her husband took Ms. Schiavo for experimental treatments and provided care
himself. Speech and physical therapy was also attempted. In 1993, he asked that
Terri’s medical status change to Do Not Resuscitate.
In 1998, Mr. Schiavo asked the courts to remove Terri’s feeding tube. Again, Ms.
Schiavo did not have any written documentation as to her wishes. Terri’s parents
requested that life support including feeding, be continued. During the legal process,
several pieces of uncorroborated evidence were cited by Terri’s parents as evidence
that Mr. Schiavo no longer represented their daughter’s interests. Michael Schiavo had
previously lived in the household with Terri’s parents but moved out and eventually
had a live-in female paramour. The parents’ efforts to discredit Michael Schiavo
included insinuations that he had physically abused Terri and that his actions even
contributed to her comatose state at hospital admission. After several appeals, a
county judge ordered the removal of the feeding tube. In all, there were a total of
14 appeals in the Florida courts. All the appeals to the federal courts upheld the
decision to remove the tube. Ms. Schiavo died in late March 2005—15 years after
she was placed on life support. The Schiavo case is an example of how when there
is disagreement at the end-of-life in the U.S., the legal system mediates the final
decision. The degree of acrimony and public airing of family differences were also
features of this highly publicized case (Pence, 2016).
4.3.2 The Individual as Surrogate Decision-Maker
As noted above, the family is the primary transmitter of cultural and religious norms.
Families, however, have their own internal dynamics regarding the locus of authority
for important decisions, the degree of duty or obligation that members have towards
one another, the relative importance of rules, consistency and structure, and the
significance of tradition (Searight, 1997). In the face of a crisis, such as with a
terminally ill parent, these patterns may be challenged or they may be taken to
extremes such as when the oldest adult son tells his siblings that he, alone, will
receive the information about their father’s medical status and he, alone, will make
all needed medical decisions.
In decision-making regarding a seriously ill family member, who may be demon-
strating compromised cognitive functioning or who is non-responsive, U.S. hospi-
tals both implicitly and explicitly continue the individualistic focus by attempting
to establish a specific family member as the patient’s surrogate. This pressure to
immediately establish a family spokesperson may conflict with cultural norms that
emphasize a process of collective consensus. As is often the case in Hispanic fam-
ilies, all members of the family may need to be convened before a decision can be
communicated. The collective decision, may be ultimately communicated by a dis-
tinguished elder who moderates the discussion and speaks to healthcare professionals
on behalf of the family.
In acute hospitals in the U.S., healthcare professionals prefer and actively try
to install a single individual as the family spokesperson. In a qualitative study of
end-of-life decision-making in the intensive care unit, Quinn, Schmitt, Baggs and
colleagues (2012) developed a typology of how an individual came to be designated as
the conduit of information for family members. The first role, the primary caregiver,
was typically a family member who was involved with the patient’s care before
the hospital admission. Often, the eventual hospitalization felt like a “defeat” for the
primary caregiver who had ultimately been unable to manage the patient successfully
at home.
In other families, a primary decision-maker had been formally established through
a durable power of attorney (DPOA). In one family, one of the patient’s daughters was
the legally indicated healthcare proxy. When it was required that a do not resuscitate
order sheet be signed, the officially designated proxy signed first but then her siblings
indicated that they all wanted to sign the DNR document. As one of her sisters said
“We all want to sign, we don’t want only [proxy] to feel like she’s the one who did
this” (Quinn et al., 2012, p. 5).
As mentioned above, clinical staff encouraged establishing a single-family
spokesperson so that information can be transmitted efficiently (particularly impor-
tant in large families) and to designate specifically who would be responsible for
communicating any decisions that needed to be made. When this designation did not
occur, as might be the case in families from collectivist cultures, the ICU staff often
was frustrated. However, hospital staff also behaved in ways that conflicted with the
designation of a specific spokesperson. For example if another family member hap-
pened to be visiting, they might become the temporary spokesperson (Quinn et al.,
2012).
Another role was the “out-of-towner” (Quinn et al., 2012). The out-of-towner typ-
ically was a family member who had not been involved in ongoing care of the patient
and often had not been present for the early stages of hospitalization. In some fam-
ilies, decisions about treatment were delayed until the out-of-towner arrived. How-
ever, the out-of-towner’s arrival could trigger increased conflict. Having observed
these dynamics as a hospital psychologist and a member of the institution’s ethics
committee, it is likely that the out-of-towner’s perceived disruptiveness may stem
from several motivations. Molloy and colleagues (1991) have described this pattern
as “The Daughter from California Syndrome.” An adult child who lives far away
may experience guilt at not having been involved with their aging parent. To address
their discomfort, they may seek aggressive treatment for their parent as a way of
addressing the implication that they have been negligent (Molloy, Clarnette, Braun,
Eisemann, & Sneiderman, 1991). Additionally, the out-of-towner often can only be
present for a limited period of time and has to return their geographically distant
home—often within several days. When a parent appears to be nearing death, the
out-of-towner may want to expedite the process so they do not need to make a return
trip for a funeral. The out-of-towner’s motivation may also lead them to push for hos-
pice care before other family member’s have accepted the inevitably of the patient’s
relatively imminent death.
Another role in the U.S. ICU was “the patient’s wishes expert.” This family
member was typically an adult child who was confident that they knew what the
patient would want in terms of end-of-life care (Quinn et al., 2012). However, the
“expert” may not have current knowledge of the patient’s wishes and/or may interpret
“what mom would want” differently from a sibling. As is often the case, if end of
life issues are not often openly discussed and the time between discussion with a
family member and serious illness is of some years’ duration, the patient may have
disclosed revised wishes to another family member. Often, two adult siblings might
have very different interpretations about the patient’s wishes.
Consistent with the concept of filial piety, there were often protectors—adult
children who wanted to shield a vulnerable family member from having to make end-
of-life decisions (Quinn et al., 2012). On rare occasions, the protector role included
successfully convincing the health care team—at least temporarily—to withhold
prognostic and treatment information from competent patients. While physicians

would initially go to a competent patient for informed consent for treatment, it is
assumed that the patient does have relevant information. If relevant information is
being withheld, the patient cannot make a truly informed decision.
Finally, some families included a healthcare expert—a physician or nurse whose
clinical expertise was respected by other family members. While family members
with medical background could be helpful in terms of explaining procedures and
outcomes of interventions such as intubation, at times they disagreed with the health
care professionals who were actually taking care of their relative, Because the patient
was a close family member such as an aging parent, emotion and loyalty often colored
objective medical judgment (Quinn et al., 2012).
ICU staff observed that often there was not a single spokesperson but instead,
a “spokes-group” that emerged when multiple family members wanted to actively
participate in decision-making. These multiple spokespersons were particularly com-
mon when serious issues such as withdrawal of life support arose. As has been noted,
this collective process has been described as particularly common among Hispanic
communities s in the United States.
4.3.3 Cross-Cultural Perspectives on Families at the End

of Life
Including all close family members in the process of decision-making for a loved one
is often incongruent with the individually-focused medical and legal system found in
countries such as the United States. For example, a variation on the “out-of-towner”
theme may occur in non-Western and Hispanic cultures but is not typically associated
with social disruption and interpersonal conflict. While not formally established
as law, in Korea and Taiwan, a standard practice is that physicians communicate
medical bad news to the oldest member or head of the family. However, in these
Asian countries, it is also extremely important that all family be members be present
at the time of their loved one’s death (Cheung et al., 2015).
Among African-American families, while there was often agreement about main-
taining the dignity of the terminally ill family member, issues such as denial of the
significance of the illness and differences in religious views often were the sources
of internal family conflict (Johnson, Hayden, True, et al., 2016).
While not typically described as highly collectivist in their orientation, the U.S.
African-American community typically places a very strong value on family. At the
same time, consensus may be more difficult to achieve when it comes to an ailing
family member. In a study of palliative care providers, African-American families
were described by physicians as supportive yet, complex (Rhodes, Batchelor, Lee, &
Halm, 2015). In the health care professional’s opinion, the patient, themselves, was
often ready to move towards accepting palliative care but family members persisted
in seeking aggressive treatment. It was noted that the patient, themselves, may feel
pressured by family members’ agendas to “keep fighting” and may continue with
unsuccessful treatment to please an adult son or daughter (Rhodes et al., 2015).
This complexity was evident in Johnson et al.’s (2016) study of end of life care
among African Americans. These investigators described how family members were
often very engaged in issues surrounding end of life care (Johnson et al., 2016), but,
at the same time, there was often pronounced dissension within the family: “In my
family, they just cannot make decisions.” (Johnson et al., 2016, p. 145). Another
respondent mentioned regrettable conflict: “… the last thing that resonated with me
from my father was I know it was very important to him that his family be together,
but we were not all at the same place.” (Johnson et al., 2016, p. 145).
In dealing with patients from Asian and some Hispanic cultures, the Western
physician may experience a desire to free the individual patient from the perceived
tyranny of familial control (Ho, 2008). While it may be perceived that the family
is exerting undue influence on the patient, family members may view themselves
as protective—particularly in the face of a healthcare professional who may not
understand their family’s culture.
As Western views of patient autonomy become more common in Africa and Asia,
there has been increased interest in advance directives in these regions. However,
the introduction of advance directives may result in conflicts between traditional
collectivist versus newly-introduced individualist approaches to decision-making.
Foo and colleagues (2012) note that when the patient does not exhibit capacity
for independent decision-making, the family as a unit becomes the decision-maker.
However, durable powers of attorney are only available for one person. If these are
enacted in collectivist cultures, family members may not accept the “official” status
of the person designated as the power of attorney. Complicating matters further is
that surrogates often want a more aggressive level of care than the patient, themselves
(Suhl, Simons, Reedy, & Garrick, 1994).
One of the key conflicts that emerges in collectivist societies is that the patient may
also experience a responsibility to protect their family. Reflecting a communitarian
approach, Candib (2002) presents the case of Mr. Doe, a 42-year-old Vietnamese
man diagnosed with metastatic squamous cell carcinoma. After being told of the
diagnosis and the poor prognosis, Mr. Doe requested that the physician not inform
his family. “They have enough on their minds already they do not need to worry
about this.” While the physician originally thought that the patient was “in denial”,
over the next several months, as he deteriorated, the patient did inform his wife and
daughters. He went back for to Vietnam for a visit and returned and died soon after.
This theme of not wanting to burden family members also emerged in a study
of Korean Americans. It was found that interviewees who were concerned about
being a burden to family members were more likely to have engaged in end-of-life
discussions. In addition, older Korean-Americans who were particularly concerned
about being a burden on family were less likely to accept life sustaining treatments
and also less likely to complete advance directives (Duke, Thompson, & Hastie,
2007; Ko, Roh, & Higgins, 2013).
The web of family duties is complex. In Frank et al.’s (1998) interview study
of Korean Americans, their informant, Mrs. Kim, noted that dying at home is the
preference in Korea. However, one benefit she observed in the American custom of
dying in a hospital is that it reduces the family’s responsibility. At the same time,
however, Mrs. Kim indicated that it is the family’s responsibility to do anything
they can to prevent their loved one’s death. A contradiction that emerged was that
Mrs. Kim indicated that she would not be controlling her treatment if she became
terminally ill. When talking about herself, Mrs. Kim indicated she would not want
to prolong futile treatment. However, in following her preference for family-based
decision-making, she saw her family as ethically obligated to request that everything
should be done to maintain her life even in the face of medical futility (Frank et al.,
1998).
Among the Roma who have settled throughout Europe including in Romania,
Hungary, Germany, France and Spain, there is a very strong commitment to family
with multiple generations living in a single household and considerable importance
devoted to family rituals such as weddings and births. Finally, there is a strong value
of respect for and care for the elderly. It is expected that adult children care for their
parents and other older family members. Illness is not seen as an individual problem
but as a phenomenon affecting the extended family as a whole (Peinado-Gorlat et al.,
2015). The Roma’s strong emphasis on extended family includes obligation to more
distant relatives such as uncles and aunts, as well as nieces and nephews (Peinado-
Gorlat et al., 2015). Women in the Roma culture are the caregivers for these elderly
family members. For Roma women, this responsibility is an automatic duty and
considered a priority.
The contradiction noted in Asian-American families was also reported by Roma
women. When asked hypothetically about their own wishes at the end-of-life, there
was a strong preference for not being maintained alive through technology. However,
when it came to a family member, doing everything possible to maintain life was
seen as a duty or obligation. Family members were described as suffering more at
the end of a patient’s life than the patient, themselves: “You’re suffering, but those
around you are suffering more. That’s even worse.” (Peinado-Gorlat et al., 2015).
The degree of collectivism among the Roma is illustrated by a condition called
resignation syndrome. This condition, described among Roma immigrant children
in Sweden, occurs when the family has been formally denied legal asylum by
the Swedish government. Soon after the denial, children and adolescents enter a
comatose-like state and may require tube feeding. Resignation syndrome resolves
when the family successfully appeals and receives legal asylum (Aviv, 2017).
In many states within the U.S., when a patient has not specified a surrogate or does
not possess a clear advance directive, there is a succession policy of persons who
may decide on behalf of the patient. Even in states without formal legislation, this
sequence is typically followed by physicians to determine who shall. make medical
decisions for an incompetent patient who cannot represent their own desires. The
typical “chain-of-command” for medical decision-making in order of priority is:
—patient’s spouse, followed by the patient’s parents, followed by adult children,
and other relatives in order of consanguinity. In clinical situations, if conflicts arise,
they are most likely to occur between adult children. Among the patient’s offspring,
other than requiring that they be of age, there is no stated sequence for determining
who should serve as surrogate decision-maker. When an aging parent does not have
decisional capacity and there are multiple adult children, conflicts may arise without
a clear legal framework for resolving them.
4.3.4 Hardwig: At the End-of-Life, Patients Are an Unfair

Burden to Families
In U.S. bioethics, the major proponent of a family focus is the philosopher, John
Hardwig. Hardwig has written a series of provocative and controversial articles such
as “Is There a Duty to Die,” in which he argues that the emotional and financial
strain on the family coping with a terminally ill member may outweigh the value of
extending the patient’s life. An anthology of Hardwig’s writings includes an after-
word in which members of Hardwig’s family share their reflections about the duty to
die. Included is Hardwig’s son who shares a story from the extended family regard-
ing his great-grandfather (John Hardwig’s grandfather). After suffering a significant
heart attack, the great-grandfather was ordered by his physician to have an extensive
period of bed rest. Because he was concerned about the imposition that he would be
placing upon the family, and the fact that the family had little in the way of health
insurance, he committed suicide. Hardwig implies that his great grandfather calcu-
lated that the money from his life insurance would be of greater benefit to his wife
than his continued presence in a debilitated state.
With illustrative examples such as these, Hardwig argues that contemporary U.S.
bioethics suffers from an individualistic fantasy. “Lives are separate and unconnected
or that they could be so if we chose.… I …[am] …free morally to live my life
however I please, choosing whatever life and death I prefer for myself” (Hardwig,
2000, p. 121). In reality, in end-of-life care, when the question arises “What is best
for the patient?”, the patient is focused upon as an autonomous individual without
responsibilities to others. Hardwig (1990) argues that because of the impact that their
decisions have on family members, patients may have a duty to refuse treatment that
prolongs the dying process.
While not as relevant in countries with national, universal health coverage, Hard-
wig (1990) points out the significant financial strain the dying process places on
families in the United States. While this burden may be mitigated somewhat by the
Affordable Care Act, the fact that there is still 7–10% of the U.S. population that
“falls through the cracks” with respect to insurance and that adequate levels of health
insurance coverage are often accompanied by exorbitant premiums which many indi-
viduals cannot afford, Hardwig’s financial analysis, while often raising discomfort,
addresses realistic issues.
In the U.S., which does not have government-based universal health coverage
and in which private insurance companies may charge substantial premiums and
still limit the amount that they will pay for care, a loved one’s serious illness can
have significant financial impact on the family. Hardwig (2000) notes that among
patients who had less than a 50% chance of living six months, 20% of them had
family members who had quit their jobs or made significant economically-related
lifestyle changes, close to 30% lost their savings and another 30% lost a significant
amount of income (Hardwig, 2000) in caring for the ailing family member. While
it is morally distressing to perform economic analyses on a loved one’s survival,
Hardwig (2000) makes the case that these additional six months of life are likely of
less than optimal quality and, from a utilitarian perspective, may not be worth the
fiscal burden placed on families. This is particularly noteworthy in the United States,
where family members provide support for the vast majority of older individuals in
ill health.
Hardwig (2000) goes as far as to generate a list of circumstances that “make it
more likely that one has a duty to die” (p. 129). These circumstances include age—as
one grows older, there is less of life to be sacrificed for others; “your loved ones have
already made great contributions-perhaps even—sacrifices to make your life a good
one.” (Hardwig, p. 129).
Hardwig (2000) even addresses the issue of competence. He argues that if one has
become incompetent through some type of dementia “the part of you that is loved
will soon be gone or seriously compromised.” If one sees that cognitive incapacity
is likely, Hardwig believes that one may have the duty to end one’s own life before
the medical and legal systems become involved. He points out that the medical and
legal systems are likely to prolong one’s life even when it is burdensome to oth-
ers. However, unlike cultures that are collectivist in their orientation, Hardwig does
not describe families as having a shared cohesive culture. He sees that families are
composed of individuals—each with their own beliefs, values, and goals. Hardwig’s
(2000) perspective is certainly logical and rational. However, human beings fre-
quently are not so cognitively analytic. The idea of ending one’s life early to benefit
others creates a scene of spending ones’ final days making a “pro” and “con” list.
What makes Hardwig’s perspective different than the collectivism just described
for Roma and Asian families? The families in these culturally distinct communities
share a collective identity with accompanying core values. The families described
by Hardwig are groups of individuals concerned with their own self-development.
In Asian collectivism, there is an emphasis on shared family feeling. In contrast to
Hardwig’s view of colliding atoms, discussions of East Asian family-oriented ethics
describe a complex web of relationships: “one is no longer an independent person
but a member of the family, a unified ethical entity” (Cai, 2015, p. 191).
4.4 The Physician as Part of the Family
In countries in which Confucianism and Islam exert significant influence, physicians

are still revered figures. While the issues described by Quinn et al. (2012), in the
U.S. intensive care unit have an “us versus them” connotation with the medical team
pitted against the patient’s family, this separation of the health care professional from
the patient’s family reflects distinct cultural values.
In China and to some extent South Korea, the Confucian ethic places the physician
within the family, itself. One of the virtues of Confucianism is that the physician,
in whom the family places great trust, would treat their patients as if they were
the doctor’s own family members (Lee, 2015). The physician, to use Pellegrino’s
term, exhibits phronesis—wisdom—which engenders this trust. Loyalty is another
key element of Confucianism and the healthcare professional demonstrates this:
fidelity to the patient and their family. A recent study conducted in Hong Kong,
with both patients and their families as well as healthcare professionals, found that
joint decision-making by the family and healthcare team was ranked most highly. In
discussing the possibility of advance directives, the majority again viewed discussion
between the family, the patient, and the physician as the optimal way of drawing up
an agreement of this type. The sequence for this approach to decision-making is
essentially that the physician and other members of the healthcare team discuss the
optimal treatment while including attention to the patient’s preferences and present
the plan to the family (Chan, Doris, Wong, et al., 2015).
Moazam (2000) describes how in Pakistan, it is common practice to protect
patients by not disclosing a terminal condition. However, the physician, is also seen
as a member of the family. They are treated with great respect—often addressed as
Sahib (“Lord”). In Pakistan, there is a strong respect for authority and extended fam-
ilies typically live together even after marriage. One’s identity is primarily through
family membership. Moazam (2000) describes how she often experienced herself as
a distinguished elder in the families of patients that she treated. It was not unusual for
patients and their families to ask her “Doctor, Sahib, what you would do if you were
in my place?” In an interaction with the father of a critically ill newborn, Moazam
(2000), following her training in the West, began describing the infant patient’s con-
dition. She was interrupted by the father who indicated that he placed his faith in God
and that Dr. Moazam represented the wisdom of God as well as the healing power of
God on earth. He did not need any more information; the father trusted Dr. Moazam
to do what was best for the infant and their family.
4.5 Conclusion
While disclosure of serious medical conditions as well as treatment options are

essential parts of informed consent, this model of disclosure is not universally
accepted. While the United States and other Western countries are undergoing pro-
found changes that have left families in states of interpersonal instability and often
with few individuals in whom they can consistently trust, outside of Western indus-
trialized countries, which comprise only a minority of the world population, family
cohesiveness is still common. It is not surprising that the development of advance
directives and durable powers of attorney which permit the individual to continue to
express preferences for care when they can no longer communicate their desires, have
become more common in the United States than elsewhere. In a society in which the
only one who can be counted upon is oneself, healthcare decisions centered on indi-
4.5 Conclusion 61
vidual autonomy are certainly understandable. However, changes in the U.S. family
also make it easier to see how, in many respects, Western countries are, presently an
individualistic anomaly in their approach to end-of-life decision-making.
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Chapter 5
Advance Directives, Do Not Resuscitate
Orders, Hospice, Organ Transplantation
and Physician Assisted Suicide
Advance care planning can take a number of forms including discussions with family
members that are not formally documented, similar discussions with one’s physician,
and directives for level of care during hospitalization such as do not resuscitate (DNR)
orders. Organ transplantation has, in the span of less than 50 years, moved from
a rare, highly publicized experimental procedure to a relatively common surgical
procedure for conditions such as kidney failure. A difficult issue with harvesting and
transplanting organs such as the heart, is that the donor, while maintaining some
physiological activity, is considered to be in an irreversible state of death. As was
evident in the description of ethical dilemmas in Israel, death has not been consistently
defined. In addition, there are significant cultural differences as well as international
variability in the use of advance directives, hospice, do not resuscitate orders, and
the acceptability of physician-assisted death.
5.1 Advance Directives
Advance Directives (ADs) have been mentioned throughout this book. In this section,
these documents will be examined in detail. Advance directives are documents which
indicate the patient’s wishes regarding treatment when they are no longer able to
convey their requests for care or in which, due to cognitive compromise, there is
concern about a patient’s judgment and decisional capacity. These documents, in
part influenced by the attention given to the Quinlan and Cruzan cases, permit the
patient to maintain autonomous decision-making regarding their medical care. A
living will is a document that describes the level of treatment and level of life support
desired. A living will may be used in conjunction with a Durable Power of Attorney
which is a specifically named individual who represents the patient’s decisions about
treatment and who serves as proxy for the patient. In some European countries,
both approaches are used simultaneously. The individual appointed durable power
of attorney oversees the implementation of the living will to be certain that its terms
are carried out as the patient intended.
66 5 Advance Directives, Do Not Resuscitate Orders …
While initially described in the 1970s, ADs became increasingly common in

the U.S. with the passage of the Patient Self-Determination Act, which required
that every health care institution receiving Federal funds (typically in the form of
Medicaid reimbursement) provide information to all patients about ADs. As a part
of the Affordable Care Act, the Centers for Medicare and Medicaid Payment are
to provide reimbursement for end-of-life counseling. Politicians, who were opposed
to this provision, were often opposed to the Affordable Care Act, in general, and
referred to physicians having these discussions with patients as being part of “death
panels.” (Frankford, 2015). While the Affordable Care Act is undergoing revision,
the original legislation established a policy that there should be no additional cost to
Medicare patients if these discussions occur as part of annual checkups.
5.1.1 How Many People Have Advance Directives?
In the U.S., depending upon the setting and the population sampled, there is consid-
erable variability in the prevalence of advance directives (ADs). It is estimated that
slightly more than 1/3 of the general population has an advance directives (Yadav
et al., 2017). A large-scale study examining the frequency of ADs, based on data from
2011 to 2016, concluded that 36.7% of the US population had completed an advance
directive which included 29.3% who had a living will. Of note, among those with
chronic illnesses, 38.2% had a completed advance directive compared with 32.7% of
“healthy” adults (Yadav et al., 2017). A study conducted 15 years after the passage
of the PSDA found that 18% of all patients hospitalized in medical and surgical units
had an advance directive (Morrell, Brown, Qi, Drabiak, & Helft, 2008).
The prevalence of advance directives varies based on the age of patients as well as
the geographic location of the setting in which they are hospitalized. It is estimated
that about 70% of older adults in the community have an advance directive. While
there is geographic variation in the presence of ADs, these regional differences
become less pronounced when factors such as patient race and level of Medicare
expenditure are included (Nicholas, Langa, Iwashyna, et al., 2011).
The need for formalized end-of-life decision guidance is supported by the types
of issues commonly arising in hospitals. In a study of patients over 60 years of age
who died in a hospital setting, slightly over 40% needed decisions to occur about
their care (Silveira, Kim, & Langa, 2010). Characteristics of patients needing this
assistance with decision-making were patients who: exhibited significant memory
problems, were admitted from nursing homes, had experienced the death of a spouse
and were diagnosed with cerebrovascular disease. It was estimated that of those
clinical situations in which decision-making about the patient’s care was an issue,
70% of the patients did not exhibit intact decisional capacity. Among those with
living wills, only 2% requested aggressive treatment while 96% requested comfort
care. Among this group of patients, living wills had been completed a median of
20 months before death (Silveira et al., 2010).
5.1 Advance Directives 67
As the average lifespan lengthens and more people live well into the 80s, the
likelihood of cognitive impairment increases as well. Therefore, from the perspective
of future public health planning, advance directives are consistent with demographic
trends. It has been reported that a written advance directive can be completed in
a median time of 14 min in a physician’s office visit. However, the range of time
intervals for completing an AD varied considerably from −8 to 44 min. While both
physicians and patients appear to see the value in advance directives, the percentage
of completed directives remains fairly stagnant. Generally speaking, patients prefer
that their physicians initiate these discussions and if they do so, patients appear
to be willing to participate (Emanuel, Barry, Stoeckle, Ettelson, & Emanuel, 1991).
However, despite being logically predisposed to advance directives, physicians often
do seem to be reluctant to bring up the topic with patients. The outpatient setting in
which patients are generally fairly healthy would seem to be the preferred context
for completing ADs compared with an inpatient hospital admission precipitated by
life-threatening illness.
5.1.2 Diversity and ADs in the United States
In the U.S., White European patients are most likely to have an AD. African-
Americans as well as Hispanics are significantly less likely to use an AD (Johnson,
Kuchibhatla, & Tulsky, 2008). In part, this pattern may stem from a spiritual per-
spective that death is something that is determined by God and that it is an affront to
God’s plan for the patient or the family to take over this process. Advance directives
in general are used to limit life-sustaining care—African-American and Hispanic
patients are more likely to desire ongoing care despite a poor prognosis (Blackhall,
Murphy, Frank, Michel, & Azen, 1995; Searight & Gafford, 2005). Among immi-
grants to the United States, those with greater degrees of acculturation were more
likely to have engaged in some type of advance care planning (Blackhall et al., 1995).
While religion and spirituality are likely to be significant influences on AD com-
pletion among some ethnic communities, the general population does not demon-
strate an association between religiosity or involvement in faith-based activities with
advance care planning. This global absence of an association is noteworthy since
religion and spirituality often are significant issues at the end of life. One of the
implied reasons for not participating in end-of-life discussions among those who
view religion as an important part of their life is that issues of life and death are
appropriately left to God. With respect to religious affiliation, participants report-
ing Catholic and evangelical affiliations were less likely than mainline Protestant
affiliates to have advance directives even after adjusting for personal health values
(Blackhall et al., 1995). Conservative Protestants were more likely to report that reli-
gious beliefs would influence their medical decisions and to endorse the view that
the length of one’s life is determined by God.
5.1.3 Prevalence of ADs Outside the United States
In Canada, Belgium, France, and much of Australia, advance directives have been
formally codified into law (Beširević, 2010). While currently undergoing changes
in end-of-life practices, collectivist cultures have, historically, had lower rates of
AD completion. In a sample of 400 t Japanese citizens, over 80% wanted informa-
tion about their diagnosis and treatment options. However, fewer than half of those
surveyed wanted a formal, written, advance directive. The majority preferred to con-
vey their wishes regarding treatment verbally to the physician or family members.
Among residents of a palliative care institution in Korea, only 0.7% had an advance
directive (Lee, 2015). As of 2015, ADs had not received legal recognition in China
(Yang, 2015). While the documents have been approved for use in Taiwan in 2000,
their use is restricted to terminally ill patients who have received the approval of two
physicians (Yang, 2015).
In Hong Kong, ADs were also rare. In a study of health care providers, patients,
and their families, advance directives were seen as representing the patient’s wishes;
however, family members and healthcare staff did not view these documents as pro-
viding guidance in any absolute sense. ADs were viewed as one piece of information
to be used along with family and physician input. Nearly 2/3 of family members and
close to half of patients themselves indicated that there were situations in which it
was appropriate not to follow the patient’s advance directive (Chan, Doris, Wong,
et al., 2015).
Among the Roma of Europe, ADs were not seen as appropriate. In many respects
these documents were seen as insensitive and almost disrespectful “You’re going to
read a paper on how to care for your mother? You care for her in her own way; you’re
not going to read a piece of paper” (Peinado-Gorlat, Castro-Martínez, Arriba-Marcos,
Melguizo-Jiménez, & Barrio-Cantalejo, 2015).
Recent Bosnian immigrants to the U.S. also expressed discomfort with the empha-
sis on formally documenting these decisions: “Its s like you’ve already planned to
live or die. We don’t do this like you do in this country… It’s too much; you only
have one life” (Searight & Gafford, 2005, p. 301).
5.1.4 Limitations of ADs
Early research on the impact of ADs indicated that they often had little impact on lim-
iting treatment (Perkins, 2007). There also did not appear to be much correspondence
between patients’ wishes as expressed through the advance directive and actual care
received. While the assumption behind advance directives is that impaired decision-
making ability is a common feature in older seriously ill patients, the actual use of
ADs in with patients exhibiting impaired decisional capacity who are experiencing
life-threatening illness with potential for treatment is unknown (Silveira et al., 2010).
5.1 Advance Directives 69
One of the key conflicts with advance directives is that family members of patients
with cognitive impairment or who are nonresponsive often want more aggressive
treatment than the patient’s living will specifies.
5.2 Do Not Resuscitate (DNR) Orders and Limiting Care
Do not resuscitate (DNR) orders permit (usually hospitalized) patients to indicate

if they would want the health care team to provide cardiopulmonary resuscitation
(CPR) in the event of a cardiac arrest. In many Western countries, despite adults’
preferences to die at home, death will occur in a hospital. In the U.S., among those
under 85 years old, 20% of all deaths occur in an intensive care unit. In Taiwan,
the location of death has particular significance. Death in a hospital means that the
soul will not be able to leave that setting. There is a strong preference among the
Taiwanese for death to occur at home. However, among other Asian cultures, having
a family member die at home brings bad luck to the household (Cheng et al., 2015).
Standard demographics such as age and health do not consistently predict patients’
selected DNR options. Importantly, when patients who self-selected choices for treat-
ment were compared with those of close relatives’ choices for them, the group agree-
ment rates were low. This pattern suggests that substituted judgment is often not a
representation of the patient’s preferences (Emanuel et al., 1991). One of the key dif-
ficulties in discussing treatment options in hospitalized seriously ill patients is that
patients and their families often do not have an appreciation of the relative success of
various treatments nor do they often understand the degree of invasiveness associated
with life maintaining interventions. For example, success rates in reviving patients
with cardiopulmonary resuscitation have been relatively stable—for patients younger
than 70 years success rates are around 15% and approximately 12% for those older
than age 70 (Schneider, Nelson & Brown, 1993). The technique has been featured on
some popular medical television dramas—usually with great success. In one analysis
of CPR depicted in multiple television programs, 77% of the “patients” survived the
immediate arrest (Diem, Lantos, & Tulsky, 1996)—a much higher percentage than
reported in most research studies. As a result of multiple influences, patients and
their families, came to view CPR as a successful miracle-like intervention. CPR was
soon used on a much larger scale with all patients experiencing cardiopulmonary
arrest—unfortunately, the outcome of this emergency procedure was often not seen
as beneficial to patients—only prolonging suffering. As CPR became more common
in hospitalized intensive care unit patients, many U.S. hospitals began to develop
informal processes to prevent repeated CPR when it was not seen as being in the
patient’s best interests—through “slow codes” or cryptic notations in patients’ med-
ical records.
In the U.S., the representation of DNR orders varies across ethnicities. Garrido,
Harrington, and Prigerson (2014) found that in the U.S., non-Latino Whites were
significantly more likely to have a DNR order compared with African-Americans and
Latinos. In their sample of cancer patients, 44.9% of non-Latino Whites indicated
a DNR order compared with 24.7% of Latinos and 19.7% of African-Americans.
Patients with DNR orders placed a higher value on comfort and pain relief than life
extension (Garrido et al., 2014). African-American patients with DNR orders were
significantly more likely to endorse a preference for mechanical ventilation even if
it would only extend life for a day. With respect to feeding tubes, close to half of
African-American patients and 40% of Latino patients indicated that they would want
a feeding tube if it extended life one day compared with 26% of Whites (Garrido
et al., 2014). A study of cancer patients found that African-American patients, in
particular, were much more optimistic about the success of treatment—to the extent
that the level of optimism about treatment success far outweighed available clinical
data (Gramling et al., 2016).
Religious and spiritual orientation also plays a role in agreeing to DNR orders.
Family members who are religious and believe that human life was in the hands of
God would typically wish to maintain life support. “Do everything that is possible
to keep him alive. And if it doesn’t work, that’s because God is asking for him.”
(Ernecoff et al., 2015, p. e-4). The religious affiliation of the physician also appears
to play a role in how DNR orders are implemented. For example, withdrawal of
ventilators was less common when the physician was Jewish, Muslim or of the
Greek Orthodox faith (Sprung et al., 2007). Protestant physicians, by contrast, were
more likely to initiate limiting treatment earlier in the hospital course than those of
Greek Orthodox background. In cases where treatment was withdrawn, the time to
death was longer when the physician was Jewish versus Christian Protestant (Sprung
et al., 2007).
While it might appear that the PSDA would influence healthcare providers sensi-
tivity to end-of-life issues and increase documentation of DNR orders, this pattern
has not been consistently found to be the case. In a large multisite study of Medicare
patients, while early DNR orders (during the first two hospital days), did increase,
DNR orders occurring later in the hospital course actually declined after PSDA
implementation (Baker, Einstadter, Husak, & Cebul, 2003).
5.2.1 International Perspectives on DNR Orders

and Limiting Care
In the Jewish tradition, the sanctity of life is the preeminent value guiding decisions
about whether to initiate and maintain artificial nutrition. Withholding nutrition,
according to a minority of Jewish ethical scholars, might be considered acceptable in
persons in persistent vegetative states who have a limited life expectancy (Sturman,
2003). From the perspective of Halachic law, these patients’ deaths are foregone
conclusions and because death is inevitable, one can justify not initiating artificial
feeding. However, in Israel this view is, at present, a minority perspective. How-
ever, it is very clear that a patient would not be permitted under Halachic law to
“autonomously” refuse artificial nutrition or hydration. It is not within the authority
of medical professionals to intentionally cause the end-of-life either through com-
5.2 Do Not Resuscitate (DNR) Orders and Limiting Care 71
mission (excessive sedation of a terminally ill individual) or omission such as not

performing CPR. Additionally, patient autonomy is seen as secondary and actually
illusory since one’s life course is guided by God. Importantly, from the perspective
of Judaic ethics, refusing life-sustaining treatment would be considered immoral and
a violation of God’s will (Sturman, 2003).
More recent interpretations of Halachic law have suggested that in situations
in which reversibility of a medical condition is not possible and that the patient
will likely be deceased within weeks to a year (Sturman, 2003), treatments may be
withheld. Discontinuing a treatment versus not initiating an intervention are distinct
actions. Importantly, within Halachic law, not initiating mechanical ventilation, CPR,
or dialysis or not performing surgery may be acceptable if it is determined that these
interventions will not reverse the patient’s condition but only prolong the dying
process. However, since feeding is a basic human function, it is not morally acceptable
to withhold nutrition if one of the objectives of this deliberate omission is to expedite
death. In some circumstances when it is determined that the initiation of artificial
nutrition such as inserting a feeding tube would, by itself, cause potential harm to
the patient, withholding this intervention is acceptable.
While it is suggested that up to 80% of North American physicians used DNR
orders, these documents are less common in other countries such as Japan. In keeping
with preferences in Asian cultures, a study of terminally ill patients in Taiwan found
that fewer than 20% of those who signed consent documents for limiting care (DNR
orders) signed it themselves (Huang, Hu, Chiu, & Chen, 2008). Nearly 80% of DNR
documents were signed only by family members. In their study, Huang and colleagues
(2008) noted that patients appeared quite willing to allow family members to make
these decisions. Similarly, consent documents for entering hospice were, in most
cases, signed only by family members and did not include the patient’s signature
(Huang et al., 2008). Among a sample of Chinese physicians, 53% did not agree
with the practice of having DNR orders.
In Islamic law, the obligation not to initiate harm or to alleviate harm is more
important than beneficence. Generally speaking, in Islamic law, intentional with-
holding of artificial hydration or nutrition would be considered murder (Al-Bar &
Chamsi-Pasha, 2015). In Saudi Arabia, the Council of Scholars that addresses reli-
gious aspects of law does permit DNR orders if three competent physicians conclude
that this is appropriate. Stopping or withdrawing treatment is permitted in cases in
which a patient is clearly brain-dead, death is considered to be imminent, the treat-
ment is considered futile and intervention will only increase the patient’s suffering
(Rady, Vereheidje, & Ali, 2009).
5.3 Organ Transplantation
The modern era of organ transplantation began in the 1950s with a kidney transplant
between twins (Cai, 2015). Dr. Christiaan Barnard performed the first successful
heart transplant in 1967. Several months earlier, the first successful transplantation
of a liver from a donor occurred (Starzl et al., 1968). By the mid-1980s, organ
transplants had become much more common. In the United States, because of the
growing demand for organs, such as kidneys, a centralized registry was established
for biologically matching organs to potential recipients. However, the waiting list
for recipients has typically numbered approximately 100,000 people. It has been
estimated that 18 patients on the kidney transplant waiting list die every day.
In the case of transplantation of many organs, such as hearts, the time between
the donor’s death and implantation of the organ in the recipient is very brief. The key
issue with organ transplantation is that organs must be harvested immediately upon
death. In the case of a sudden and accidental death, family members are likely to be
acutely grieving the death of a loved one with responses that may include denial and
anger. As such, family members may not be particularly open to consenting to organ
donation. Even when the newly deceased patient’s donor card provides permission to
harvest the organs, clinical practice suggests that if family members are in opposition
to this previous consent, organ harvesting will not take place (Cai, 2015).
There has also been concern expressed about how determinations are made
between persons who are judged to be better or worse candidates for organ transplan-
tation. From the original history of kidney dialysis in the United States when dialysis
machines were very limited in number, there has been concern about the social
value placed on individuals as a determinant of being an organ recipient (Searight &
Meredith, 2019).
In the U.S., there have been initiatives to increase organ donation among African-
Americans. Particularly with respect to kidneys, African-Americans are more likely
than Whites to develop end-stage kidney disease. While nearly 36% of those on the
transplant list in 1999 were African-American, only about 22% of kidney recipients
were African-American. On the average, African-Americans were waiting a median
of 40 months compared with 20 months for whites (Alexander & Sehgal, 1998;
Epstein, Ayanian, Keogh, et al., 2000). However, in the ensuing 20 years, donor
organs from deceased African-American patients have increased. However, African-
Americans continue to be less likely to receive a transplanted kidney. Since it is
necessary to have been on dialysis to obtain a kidney transplant, this requirement
in effect reduces the African-American recipient pool since as a group, African-
Americans are likely to obtain treatment for end-stage renal disease and at a later point
in its course (Braithwaite et al., 2009). Additionally, African-Americans appear to be
less likely to complete other required procedures for being placed on the transplant
list such as undergoing a pre-transplant medical evaluation (Alexander & Seghal,
1998). While latent attitudinal discrimination is likely to play some role in this racial
disparity, unequal access to specialized health care resources plays a more substantive
role (Searight, 2019).
5.3.1 Organ Transplantation Internationally
Signing of donor cards or obtaining permission from relatives for harvesting a

recently deceased family member’s organs, as is the case in the U.S., has been
called the “opt in” approach. However, countries such as Austria and Spain, have
5.3 Organ Transplantation 73
used an “opt out” approach—sometimes referred to as presumed consent. In these

countries, everyone who dies is assumed to be an organ donor. While one might
expect that this would increase the number of available organs significantly, there
have been limitations in actual donations since physicians have been hesitant to over-
ride a family member’s opposition to organ donation (Ofri, 2012). Israeli law also
includes compensation for living donors including lost wages and expenses. From
the perspective of the Talmud, saving a life is a priority and supersedes obedience to
other commandments (Ofri, 2012). Successful passage of the legislation was likely
due, in part, to public support from both Israel’s imams and rabbis.
As life support technology has become more sophisticated, the criteria used to
define death in a potential donor have become controversial. As noted earlier, brain
death has been used as a common standard. However, the definition of brain death has
varied. For example, patients who are in a persistent vegetative state and believed
to be permanently unconscious may be able to breathe on their own and survive
for an extended period of time with artificial feeding. The competing standard for
death, accepted by conservative Jewish groups in Israel, is cessation of heart activity
(Sturman, 2003). Many patients diagnosed with brain death also experience cardiac
arrest. However, if life support is provided through this initial acute period, patients
who are “brain dead” have lived for extended periods of time—up to at least a decade
(Truog & Robinson, 2003). In Israel, organ donation is typically acceptable if the
potential donor has suffered brain death, has agreed prior to death to donate their
organs and the family is also in agreement. While a debatable practice, in some
countries such as Iran, payment for organs does occur. In Israel, buying and selling
of organs was only outlawed in 2008. While the definition of death established by
the Israeli Knesset is that the person has no blood pressure, cannot breathe without
external support, shows no pupillary response and is declared dead by two physicians,
this definition has not been without controversy. Conservative adherents to Halachala
continue to argue that cessation of the heart is the definition of death (Sturman, 2003).
In Iran, the Organ Transplantation and Brain Death Act was passed in 2000. Brain
death must be verified by four physicians including a neurologist. Because of the need
for organs, kidney donors may receive a financial award from the government. With
the cost of the procedure paid by the government and implemented by an independent
agency, the surgeons and any middlemen are kept out of the interaction. In addition,
only live donors are involved (Larijani, Zhaedi, Tahani, 2004).
There has been debate among Islamic scholars about the definition of death.
Those who view cadaveric donation as acceptable typically agree with the brain
death definition. However, those who argue from the traditional Islamic definition
of death which includes an absence of heart activity, no respiration and an absence
of cerebral brain activity as well as the onset of rigor mortis, do not accept the brain
death standard (Rady et al., 2009). Obviously, this rather stringent definition would
prevent successful cadaveric organ harvesting. In predominantly Islamic countries,
presumed consent is not accepted. Permission must be obtained from the deceased
in advance or from a family representative (Rady et al., 2009).
5.4 Hospice Care
The term, “hospice” has been used in two ways. First it is a place, often made to
physically appear more like a home than an institution for terminally ill patients to
receive palliative care. Second, hospice is an approach to treatment in which the
goal is to optimize patient comfort as well as assisting the patient to remain engaged
with their family and friends. Most hospice care occurs in homes and is consistent
with most U.S. patients’ wishes to spend their final days at home rather than in
an impersonal hospital. Research does indicate that in the U.S., White European
Americans are more likely to use hospice services compared with other ethnic and
cultural groups. Specifically, while ethnic minorities comprise approximately 25%
of the US population, only 18% of patients receiving hospice services are non-White
(Ngo-Metzger, Phillips, & McCarthy, 2008).
Entering hospice typically involves giving formal consent that active interventions
to prolong life and attempts to treat the underlying terminal condition will not be
implemented. In healthcare settings with formal regulations, admission to hospice
is seen as appropriate for persons with less than six months to live. However, it is
unusual for patients to survive any significant length of time once beginning hospice
care. Approximately 20% of newly admitted hospice patients died within a week
with only 6% surviving longer than two months (Ngo-Metzger et al., 2008). There
are gray areas regarding this policy—for example if a patient has terminal cancer
and they develop pneumonia or a urinary tract infection some physicians may view
treating those illnesses as a permissible comfort measure. Others, particularly in the
case of pneumonia, may view active treatment as inconsistent with hospice care.
In the U.S., Medicare coverage requires that a full-time adult caregiver be present
with the patient. This requirement may prevent enrolling patients in home hospice if
family members are working full-time or are not close geographically.
Multiple studies conducted in the United States have found that ethnic minority
groups are significantly less likely to use hospice than persons of White European
background. African-Americans in the U.S. are significantly less likely to enter hos-
pice. While comprising, 13% of the population, only 8% of hospice enrollees are
African-American. Surveys of potential hospice use found that African-Americans
are 20% less likely to enter hospice and once receiving hospice care, significantly
more likely to prematurely discontinue hospice treatment. In the African-American
community, hospice may be viewed with suspicion—a place where a loved one will
not receive care and be encouraged to die.
This perception, in part, may stem from a lack of acknowledgment of the seri-
ousness of illness. Additionally as one palliative care provider noted, “acceptance of
hospice care puts people off.” When viewed as a destination, hospice may carry the
message that we have given up on treating you and it is time to accept and adjust to
death. One provider noted that they had learned with African-American families to
describe hospice as a process rather than a destination. Medications that are often
used as part of palliative care and hospice such as morphine were also viewed with
suspicion by some African-American patients. Morphine, used to reduce pain, can
5.4 Hospice Care 75
also expedite death and some African-American families, at times, expressed concern
that it was a form of near euthanasia (Rhodes, Batchelor, Lee, & Halm, 2015).
In the case of Asian Americans in which respect for and care of elders is a
preeminent value, hospice use is also low. In addition to the requirement that the
patient give informed consent to being in hospice, family members may be distressed
about the implicit message that they are “giving up” on a loved one and waiting for
them to die. In many Asian cultures, this message would conflict with filial piety—the
respect and care that is shown to an aging adult parent (Ngo-Metzger et al., 2008).
One exception to the reduced use of hospice by ethnic minorities is found among
Filipino Americans. It has been suggested that because most Filipino Americans are
somewhat westernized and are predominantly Roman Catholic, hospice is looked
upon more favorably. The Catholic Church has generally been supportive of hospice
and Catholic hospitals often offer hospice care. From the perspective of Catholicism,
hospice care may be seen as part of the journey for an “ultimate union with God”
(Ngo-Metzger et al., 2008, p. 143).
In the United States, Latinos are one of the most rapidly growing ethnic minorities.
At present, Latinos comprise about 15% of the U.S. population. In contrast to White
Europeans, persons of Latino(a) background were less accepting of the idea of a
loved one’s impending death. Even after admission to hospice, Latino caregivers
were more optimistic about the outcome as illustrated by this comment: “I had a lot
of faith. I thought I was lucky in that he was getting better. He was already at hospice
but I did not think he was going to die. Then the day the doctor called me and told
me come tomorrow because he is dying… I never thought that he was leaving me”
(Kreling, Selsky, Perret-Gentil, et al., 2010, p. 5).
Kreling et al. (2010) found that most White European interviewees who had
experienced hospice care for a family member found the information about the dying
process to be useful. This knowledge appeared to help Whites feel more in control
of the dying process. Latinos, by contrast did not appreciate the written and verbal
information about the dying process and often viewed it as cruel. They were also
uncomfortable with the ongoing discussions about death. Interestingly, many of the
White European terminally ill patients made conscious decisions about when and how
to tell family members of their diagnosis and prognosis. By contrast, Latino families
were more likely to view themselves as needing to be protective of the patient. In one
family, the Latina mother who was dying of cancer was told by her adult children that
they were going to stop treatment so she could gain some weight and then she would
receive the treatment again. One Latino family member also commented that the
frequent use of the term “palliative care” was helpful in that the patient did not know
what it meant and was not aware that they were in hospice. Direct Spanish translation
of the term “hospice” means orphanage or “place for poor people” (Kreling et al.,
2010)—not synonymous with supportive, palliative care. A large survey of recently
bereaved family members—nearly all of them White Europeans—found that the
quality of hospice care was rated more highly when family members experienced
staff as being direct and honest with them about their loved one’s prognosis (Rhodes,
Mitchell, Miller, Connor, & Teno, 2008).
Hospice, as an intervention, has not developed in many parts of the world.

With increased immigration from developing to developed countries, recognition
of diverse perspectives towards end-of-life care will continue to be a challenge. For
example, in Prato, Italy, 8–20% of the overall population is of Chinese background.
However, the percentage availing themselves of home-based oncology care is less
than 1% (Verna, Porzio, Galli, et al., 2016).
5.5 Physician Assisted Death
Taking autonomy to its logical conclusion are the growing number of “right to die”
cases that have been heard by American, Canadian and European courts in the past
20 years. In most governmental legislation, legal rulings, and even the Catholic
Church’s policy, a distinction is made between intentionally acting to terminate a
patient’s life and the law of double effect. Many patients towards the end of life
may require sedative or analgesic medication for comfort. However, this medication,
depending upon the dose, can also lead to death. While some have seen this as
appropriate medical care, others have seen this as a form of euthanasia. Increasing
doses of pain medication for palliation with the knowledge that the medication is
likely to shorten life in high doses has generally been accepted by most legal and
religious authorities and is usually not considered physician-assisted suicide.
5.5.1 The United States
In the United States, physician-assisted death is regulated at the state level. Oregon
was the first state in the United States to permit the practice through a citizen’s
referendum in 1994 which was eventually enacted in 1997. In 2008, similar laws
were passed in Washington. In 2013, the Vermont legislature approved physician-
assisted death with California passing a similar law in 2015. In 2009, the Montana
Supreme Court upheld that a physician assisting a cognitively competent, terminally
ill patient with premature death, could not be prosecuted for homicide (Ganzini,
2017). At present, nine states and the District of Columbia have legalized physician
assisted suicide.
In Oregon, where physician-assisted death has been legal for over 20 years, the
following regulations guide physician-assisted death: the patient must be an Oregon
resident demonstrating intact decisional capacity; certified to have a life expectancy
of less than six month by two physicians, drugs prescribed by a licensed physician
in the state, and the patient must be able to self-administer the medication. Between
1998 and 2015, a total of 1,545 prescriptions were written and 64% of patients ended
their lives with the medication. The pattern of approximately one third of patients not
taking the lethal medication has been fairly consistent over time. There was originally
concern that physician-assisted suicide would occur with a very high rate, it actually
5.5 Physician Assisted Death 77
accounts for a miniscule number of annual deaths—38.6 per 10,000 total deaths in
Oregon (Blanke, LeBlanc, Hershman, Ellis, & Meyskens, 2017). This figure is much
smaller than for either the Netherlands or Belgium—two other regions with longer
standing laws permitting physician assisted death. At the time of their death, over
90% of the Oregon patients were enrolled in hospice program the most common
diagnosis for the Oregon patients, like those in Canada and the Netherlands, was
cancer.
5.5.2 Canada
In 2015, the Canadian Supreme Court in evaluating whether patients had a right
to a dignified death, examined the conflict between provincial criminal law which
prevents assisting any type of suicide even at the patient’s request and the federal
Canadian Charter of Rights and Freedom which guarantees “…the right to life liberty
and security of the person…” (Attaran, 2015). The court argued that the criminal
code could be overridden since it was an obstacle to individual decisions about
someone’s own death and bodily integrity—thus limiting the individual’s right to
liberty as specified in the Charter. The 2015 law does allow patients to request
palliative sedation, and to refuse artificial nutrition and hydration as well as request
removal of life-sustaining medical treatment or equipment such as a respirator. In
order to receive physician-assisted dying, the patient must have a “grievous” and
untreatable medical condition with a “reasonably foreseeable death” (Attaran, 2015).
Patients also have the choice between palliative care and physician-assisted death.
Receiving assistance in dying was officially passed by the Canadian Parliament in
June, 2016. There still remained a lack of clarity regarding implementation. Medical
Assistance in Dying (MAiD), unlike home-based programs, occurs within a hospital.
Patients who receive the service through one of Canada’s four teaching hospitals are
given lethal medication intravenously only after physicians conduct independent
evaluations which assess “the patient’s prognosis, suffering, and capacity to provide
informed consent” (Li et al., 2017). Upon MAiD’s implementation, the majority of
patients who initially requested assistance with dying were diagnosed with cancer.
However, among patients with other conditions was a patient with major depressive
disorder. Initially, psychiatric conditions were “potentially eligible” for the service
but in June 2016, mental health problems, alone, were no longer recognized as
meeting MAiD standards (Li et al., 2017).
In the initial months after passage, 86% of Canadian patients’ requests for assis-
tance in dying were approved. Of those patients approved, three-quarters have
received the assisted death protocol. As noted, in the original MAiD legislation,
it was not required that the patient have a terminal physical condition. For a period of
some months until the legislation was revised, patients requesting assistance in dying
could do so on the basis of intractable psychiatric illness (Attaran, 2015). With the
acceptance of physician-assisted suicide for mental health conditions in the Nether-
lands, it is highly likely that the Canadian government will be revisiting this issue. A
consistent finding in the United States and the Netherlands as well as more recently
in Canada is that patients requesting assistance in dying do so primarily because of

psychological distress regarding current or anticipated loss of autonomy and a desire
to experience control over their death (Li et al., 2017). Attaran (2015) suggests that
the Canadian right to die legislation will be used as a model for countries such as
South Africa, India and England which are currently examining the practice.
5.5.3 Europe
While the European Union has greatly reduced border controls between European
countries, policies regarding a patient’s right to die are variable within the European
Economic Community. The Netherlands and Belgium have among the most liberal
policies around physician-assisted death in the world. Along with Oregon in the
United States, these countries have been considered “bellwethers” of the movement
for assisted dying.
Great Britain: Great Britain has been particularly steadfast in not allowing the
right to die for patients who have terminal illnesses or who are in minimally conscious
states for extended periods of time. Britain has established a “Court of Protection”
which addresses appeals for PAS and related issues (Guardian, 2011). Historically,
the Court of Protection has held its hearings in secret and according to some ana-
lysts, has the power to impose experimental treatment on non-consenting patients.
Previously, the Court had dealt almost exclusively with mental capacity questions
particularly regarding finances or patients who refused medical treatment.
In October 2017, Noel Conway, who had a motor neuron disease, had his request
for assisted dying refused by the High Court. The Court indicated that Mr. Conway
could bring about his own death himself. Mr. Conway’s argument was that since he
estimated he had about six months to live he wished for a dignified death. Instead,
with the Court ruling, his option was to remove his ventilator and with the aid of
sedative medication, suffocate to death. Parliament in 2015 had rejected legislation
in England and Wales to allow any type of assisted dying (BBC, 2017).
France: In France, passive euthanasia (e.g., refusing a respirator or feeding tube)
has been legal since 2005. However, for both French physicians and patients, there is
some ambiguity about the legality of the principle of double effect. The 2005 Lunette
Law does allow physicians to provide a range of measures for symptom control even
when they may shorten the patient’s lifespan. However, in a 2007 case involving the
death of a 65-year-old woman with terminal pancreatic cancer, a nurse and physician
were charged with deliberately poisoning the patient (Sokol, 2007). The French
criminal court acquitted the nurse who had administered potassium chloride, while
the physician who wrote the prescription received a one-year suspended sentence.
Both health care professionals were charged with deliberately poisoning the patient.
In 2016, additional legislation was passed which more explicitly permitted cessation
of artificial hydration and nutrition as well as the patient’s right to have continuous
deep sedation until death. Deep sedation is permitted when the patient has a serious
and incurable condition with a short life expectancy or the patient’s decision to stop
5.5 Physician Assisted Death 79
the treatment would lead to significant suffering in the context of brief life expectancy
(Raus, Chambaere, & Sterckx, 2016).
5.5.4 The Netherlands and Belgium
The Netherlands and Belgium have permitted physician suicide for over a decade.
Euthanasia, as it is termed, became legal in the Netherlands and Belgium in 2002.
These countries are considered to have the most liberal laws on physician assisted
death in the world. The use of PAS has become increasingly common although
certainly not the most common cause of death. In the Netherlands, the decision not
to prosecute physicians who assisted patients in ending their lives dates back to
2002. However, in 2012, after physician-assisted death had not been prosecuted for
a decade, one in 30 people in the Netherlands died by euthanasia. This represents a
threefold increase since the practice was introduced. In Belgium, the 2013 PAS rate
was 4.6%—one in 22 deaths. Available data also suggest that Belgian physicians are
increasingly authorizing PAS—authorization rates in 2007 were 55% but grew to
77% in 2013 (Lerner & Caplan, 2015).
Belgium and the Netherlands also have come to represent the fears about PAS
held by physicians, ethicists, as well as some segments of the general population.
In a study of an end-of-life clinic in the Netherlands, nearly 7% of those who were
granted the availability of PAS reported that a major motivator for their request was
that they were “tired of living.” While not the sole reason for requesting PAS, 49%
of the requests cited loneliness is a factor (Lerner & Caplan, 2015).
In Belgium, cases involving euthanasia and or physician-assisted dying have
included conditions such as autism, anorexia nervosa and chronic fatigue syndrome.
Lerner and Caplan (2015) raise concern that patient self-determination may be such
a high priority in the healthcare community that “The risk now is that people no
longer search for a way to endure their suffering” (Ross, 2015 cited in Lerner &
Caplan, 2015, p. e-2). In other words, are countries such as the Netherlands and Bel-
gium turning to physicians to solve with euthanasia what are essentially psychosocial
issues? (Lerner & Caplan, 2015, p. E2).
As noted earlier in the discussion of historical change in family dynamics, Belgium
now permits physician-assisted death for minors. Consent of both parents and the
minor patient is necessary for assisted death to occur. Commentators in the United
States have expressed concern that Belgium and the Netherlands are “pushing” the
boundaries of physician-assisted death such that it is being presented as an option
for non-terminal health conditions such as degenerative diseases (Cohen-Almagor,
2017).
PAS and Psychiatric Illness: A practice that has become quite controversial is
the implementation of PAS for psychiatric disorders. In the few reported cases where
this has occurred, the patient did not have significant medical illness, death due to
physical causes was unlikely to occur in the foreseeable future, and the patient was
determined to be competent to make the request. In the U.S., While PAS is legal in
some states, there has been generally strong opposition to extending the option to
patients whose only illness is psychiatric. Opponents of the practice indicate con-
cern that the hopelessness associated with the patient’s request may reflect transient
distorted thinking. Miller and Appelbaum (2018) also point out that PAS for psy-
chiatric conditions could potentially be requested more in the United States than
in countries with universal health coverage because of our fragmented and often
inaccessible mental health system. Because of inaccessibility to optimal treatment
for conditions such as major depressive disorder, patients may request premature
death as an option. Finally, in the United States, it is illegal for individuals to kill
themselves and the police are required to intervene. Allowing PAS for psychiatric
conditions would appear to conflict with the criminalization of suicide.
Miller and Appelbaum (2018) describe the case of a 64-year-old Belgian woman
who had a long history of depression and who had requested PAS after the breakup
of a relationship. She apparently sought PAS from physicians but could not find
two physicians who agreed that she had an incurable illness. While the patient’s
social situation was worsened by the estrangement from her two children, a therapist
offered the opinion that these rejections would prevent her psychiatric condition from
improving. Of note, the patient’s treatment history was limited to psychotherapy and
antidepressant medication. Interventions such as electroconvulsive therapy, trans-
magnetic stimulation and implantable deep brain stimulation devices had not been
attempted. Additionally, the patient’s adult children apparently were not contacted
or involved in the mother’s decision.
In response to Miller and Appelbaum (2018), Vandenberghe (2018), a Belgian
psychiatrist, argued that while PAS for psychiatric conditions should not be a com-
mon practice, there are patients who continue to suffer and do not respond to a range
of evidence-based treatments. In Belgium and the Netherlands, rather than requiring
that patients have a terminal condition, physicians in these countries use the standard
that “patient should be able to end irremediable and unbearable suffering caused by
an illness for which treatment has been futile” (Vandenberghe, 2018, p. 885). Van-
denberghe notes that these patients often report a very poor quality of life and given
the failures of psychiatric treatment, see no end to this emotionally painful exis-
tence. Vandenberghe (2018), however, recommends a much more rigorous process
for euthanasia for psychiatric conditions than for terminal medical conditions. He
recommends that a committee of mental health professionals conduct a multidisci-
plinary evaluation before granting the patient’s request. The committee would review
the patient’s history and treatment, include attention to the patient’s life context, and
interview the patient’s family.
5.6 Conclusion
As the human lifespan lengthens and medical technology continues to develop, we are
faced with an array of choices to prolong or end our lives. We can communicate our
preferences with legally prepared documents providing instructions about whether
5.6 Conclusion 81
we would like various interventions to keep us alive when we are seriously ill. It
is possible to, at least in theory, prevent physicians from using heroic measures to
keep us alive. Additionally, hospice and palliative care are designed to help us have
a “good”, minimally painful, death. We can even perform acts of altruism in our last
days by indicating in advance that we would like to donate our organs upon our death.
However, while on the surface, these choices may appear desirable, electing any of
these options often reflects important underlying values regarding life, commitments
to others, and views of suffering.
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of organ transplantation. Critical Care Medicine, 31(9), 2391–2396.
Vandenberghe, J. (2018). Physician-assisted suicide and psychiatric illness. New England Journal
of Medicine, 378(10), 885–887.
Verna, L., Porzio, G., Galli, B., Sacco, I., Brogi, L., Spinelli, G., & Giusti, R. (2016). Immigrants
accessing end-of-life care in Italy: The tuscany tumor association experience. Journal of Pain
and Symptom Management, 51(5), e7.
Yadav, K. N., Gabler, N. B., Cooney, E., Kent, S., Kim, J., Herbst, N., … Courtright, K. R. (2017).
Approximately one in three US adults completes any type of advance directive for end-of-life
care. Health Affairs, 36(7), 1244–1251.
Yang, Y. (2015). A family oriented Confucian approach to advance directives in end-of-life
decision-making for incompetent elderly patients. In R. Fan (Ed.), Family-oriented informed
consent: East Asian and American perspectives (pp. 257–270). New York: Springer.
Chapter 6
Why Is There Such Diversity
in Preferences for End-of-Life Care?
Explanations and Narratives
The differences in views of advance directives, hospice care and do not resuscitate
orders that characterize different ethnic and cultural groups may appear illogical to
healthcare professionals of White European background. However, these patterns
reflect core cultural values around the family, one’s duty to others, the meaning
attributed to suffering, views of language as having the power to shape events, and
multiple centuries of history with a healthcare system perceived as exploitative and
abusive. This chapter attempts to provide some explanatory background about the
meaning of these differences among cultures and ethnicities toward end-of-life care.
6.1 Saying It Makes Death Real
The example at the beginning of the first chapter and the description of interpreter-
mediated communication highlights several issues that occur with Native American
populations. A 70-year-old man of Canadian aboriginal background is being evalu-
ated for possible prostate cancer. Prior to undergoing testing, a young female inter-
preter struggles to fulfill her formal role as an interpreter while maintaining cultural
beliefs. In addition to experiencing emotional difficulty discussing male genitalia
with an elder in the community, the interpreter refuses to convey the concept of can-
cer but, instead, uses the term “growth.” In a culture in which elders are treated with
respect, a young woman is not the optimal choice of an interpreter for this situation.
Additionally, she does not interpret the term “cancer” out of the belief that “speaking
the future may bring it to pass.” (Ellerby, McKenzie, McKay, Gariépy, & Kaufert,
2000, p. 849).
After the tests have been completed, the patient, his adult son and a male inter-
preter have a follow-up appointment with the physician. During the visit, an oncol-
ogist explains that the patient has advanced cancer that is spreading to the bone.
Because of the late stage of the cancer, the physician recommends palliative rather

86 6 Why Is There Such Diversity in Preferences …
than curative treatment. As the interpreter begins to convey the physician’s diag-
nostic and prognostic information, the son interrupts and corrects the interpreter for
using the Ojibwa term for cancer which means “being eaten from within.” The son
goes on to tell the interpreter that giving his father this information will only make
his father distressed and “bring death closer” (Ellerby et al., 2000). After a family
consultation including a sharing circle, a group healing method including attention to
factual content as well as spiritual and emotional dimensions (Lavallée, 2009), with
the caregiver’s family and the patient, the family indicates that they will gradually
provide information to their husband and father over time.
As Caresse and Rhodes’ (1995) description of introducing the PSDA on the Navajo
reservation makes clear, both advance directives and living wills ask us to imagine
what our values would be if we were in a state in which our chances of survival were
poor or, at best, unknown. In cultures in which language, thought and action are
inextricably linked, end of life discussions are not hypothetical future possibilities
but, instead, give terminal illness and death a reality and possibly make it a self-
fulfilling prophecy. In the Caresse and Rhodes (1995) study, a number of their Native
American informants would not even discuss advance care planning because of the
inherent danger in speaking aloud about death and disability. This perspective, while
not as explicit as among the Navajo, has been found in other cultures such as recent
Bosnian immigrants to the U.S. who reported a similar reluctance to discuss death
(Searight & Gafford, 2005). Rhodes, Batchelor, Lee, and Halm (2015) noted that
among African-American patients, recognizing that they had an illness was seen as
accelerating their death. This issue has also been mentioned in discussions of advance
directives among African-Americans. A palliative care social worker mentioned: “I
see that there is sometimes a superstition about writing an advance directive because
I’ve heard “if I write it down, it makes it happen.” (Rhodes et al., 2015, p. 140).
While there is certainly evidence that minorities have more difficulty accessing the
healthcare system and may receive less aggressive care, the difficulty acknowledging
serious illness may be another factor contributing to the delay in seeking treatment
until the condition is fairly far advanced. A palliative care physician observes: “Some-
times you have people who will not even admit they’re sick. I mean, I’ve had patients
with fumigating breast wounds that come in with duct tape and paper towels around
their chests that say, ‘I can’t own this.’ This is the hardest challenge for me—the
hardest thing for me to take care of” (Rhodes et al., 2015, p. 140).
In Korea and Taiwan, the power of language also appears to be a significant factor
making even family members reluctant to discuss death among themselves. Similar
to the pattern described for some Native American communities in the United States,
there is a view in some Asian cultures, that saying something “out loud” makes it
more likely to occur (Cheng et al., 2015). The concept of acknowledging the family
member’s likely future death is seen in and of itself as making that death more
malevolent as in this saying: “a bad life is better than a good death” (Cheng et al.,
2015, p. 5).
Physicians’ discussions with surrogate decision-makers and patients about the
likely outcome of their illness can be framed linguistically in optimistic or pessimistic
terms. As one surrogate put it, if the doctor says there’s a 5% chance of survival you
6.1 Saying It Makes Death Real 87
say to yourself that they have a 5% chance and forget the 95% (Zier et al., 2008, p. 6).
Given that the only other option to the 5% chance is death, the figure, while small,
is imbued with optimism. Research in other areas has shown that patients interpret
percentages differently than they do odds. For example, saying that a patient has a
5% chance of survival is perceived as a worse outcome than saying that they have a
one in 20 chance of survival.
6.2 The African-American Community and the Health

Care System: The Origins of Mistrust
As noted earlier, in the United States, African-Americans are less likely to develop
advance directives, use hospice services, serve as organ donors and authorize a do-
not-resuscitate order. There are multiple reasons that have been offered for this per-
sistent difference. As will be discussed below, African-American patients, as a group,
do not receive the same level of medical care as Whites. While the officially segre-
gated hospitals and healthcare clinics that were present in the southern United States
up until the 1960s no longer exist, there is evidence that the amount and of medical
care received by African-Americans is still not equivalent to that of Whites (Searight,
2019). Additionally, there is a history of experimentation conducted with African-
Americans that was deceptive and for which informed consent was not obtained.
Much of this history is striking in its inhumanity. While African-American patients
may not be able to always state the specific historical events involved, the narrative
of harm and being taken advantage of by the White medical establishment is well
known and undoubtedly influences interactions between African American patients
and health care professionals.
One of the targets of public health efforts in the United States is a reduction
in health disparities. It is very clear that certain groups within the U.S. population
have a higher burden of disability and death than others. Similarly, disparities extend
to healthcare, itself. Certain populations within the United States—often people of
color—are less likely to receive more sophisticated surgical procedures, vaccinations,
adequate pharmacotherapy, and appropriate prenatal care.
Disparities in health status among African-Americans versus Whites when placed
in the context of history are sadly understandable. African-Americans came to the
United States primarily as slaves with death rates during transport estimated to be
as high as 35% (Noonan, Velasco-Mondragon, & Wagner, 2016). After 250 years
of slavery with poor living conditions, little medical care, and significant poverty,
emancipation occurred. However, African-Americans have continued to live with a
history of discrimination.
In the United States, there is considerable evidence that African-Americans as a
group, have poorer health status and reduced access to quality healthcare. African-
Americans die at younger ages. In 2014, the U.S. life expectancy overall was
76.4 years for males and 81.2 years for females. However, for African-Americans
at birth, life expectancy was 72 years for males and 78.1 years for females. This
difference in mortality rates begins at birth–infant mortality rates have consistently
been two and half times greater for African-Americans compared with Whites. In
the past two decades, African-American women have been about 10 to 20% less
likely than whites to obtain prenatal care during the first trimester of their pregnancy
(Noonan et al., 2016).
The single greatest factor in contributing to differences in White European and
African-American mortality is the prevalence of cardiovascular disease. A now well-
known study in the late 1990s demonstrated that unrecognized racial bias likely
influences medical care (Schulman et al., 1999). In the study, a sample of over 700
physicians viewed a video interview and were given results of a thallium stress test
and EEG test results as well as background history on the symptoms of a hypothetical
patient. Based on the information provided, the physician was to make recommen-
dations. There were four vignettes: a White female, an African-American female, a
White male and an African-American male—all between the ages of 55 and 70 years.
The African-American patients—particularly women—were less likely to be referred
for cardiac catheterization. This difference remained even after controlling for symp-
toms. It was suggested that this pattern of findings was not due to overt racial bias but
more likely to be a function of “subconscious perceptions.” which activated a “cul-
tural stereotype.” (Schulman et al., 1999, pp. 624–625). Research reviews indicate
that African-Americans are still less likely to receive cardiac catheterization, med-
ications to decrease blood pressure and stroke risk, as well as less likely to receive
coronary artery bypass graft surgery (Kressin & Peterson, 2001).
Cancer treatment also appears to be significantly less aggressive when patients are
African-American. Compared with White women. African-American women with
breast cancer were more likely to undergo the greater disfigurement associated with
mastectomy and less likely to receive less intrusive surgical procedures and radiation
therapy. African-Americans were also significantly less likely to undergo surgery for
non-small cell lung cancer. Surgical intervention is known to decrease mortality rates
for the condition (Washington, 2006).
Finally, in a review of quality of care received by race, African-Americans were
significantly more likely to receive fewer desirable interventions—limb amputation
rather than efforts to conserve the arm or leg (Lavery, Ashry, Van Houtum, et al.,
1996). Additionally, compared with Whites, African-Americans as well as Hispanics
were likely to receive a poorer quality of care across a range of conditions from cancer
to mental health (Schneider, Zaslavsky, & Epstein, 2002).
6.2.1 A History of Medical Exploitation
Up until the early 1900s, medical schools were generally proprietary institutions
of varying quality. However, a factor that became important was the availability of
cadavers for anatomical dissection and instruction. These cadavers were difficult
to acquire. The South Carolina Medical College, in advertising their institution,
6.2 The African-American Community and the Health … 89
emphasized the large number of cadavers available: “subjects being obtained from
the colored population in sufficient numbers by every purpose, and proper dissection
carried out without offending any individuals in the community” (Washington, 2006;
cited in Halperin, 2007). In the 1860s, disturbing or in any way mutilating a cadaver
was seen as a form of desecration that would make it difficult for one’s’ soul to
survive in the afterlife (Halperin, 2007). As a result, a trade developed in robbing
graves. Those who had the resources would often build a protective wrought iron
fence around a relative’s grave to protect their relative’s body from intruders.
Additionally, when a slave died, their body was often sold to a medical school.
A notice from a Dr. T Stillman even sought the bodies of slaves before they were
deceased. Specifically, he requested slaves with incurable conditions and listed a
number of illnesses including diseases of the liver, bladder and even those with
diarrhea and dysentery (Washington, 2006).
In the African–American community, narratives of night doctors and resurrec-
tionists digging up graves, acquiring cadavers, and selling them to medical schools,
became well-known (Halperin, 2007). There is evidence that Black bodies were more
likely to be used in medical schools almost exclusively serving White students. One
medical institution that relied heavily upon cadavers was the Medical College of
Georgia. In 1852, the College purchased a slave and assigned him the task of obtain-
ing cadavers. He apparently drew heavily upon the local Cedar Grove Cemetery
with a predominantly indigent Black population (Halperin, 2007). In 1989, during
renovation of the medical college a number of human bones were found. During sys-
tematic excavation guided by an anthropologist, a total of 9000 bone fragments were
obtained. It was estimated that about 80% of the skeletal remains were from African-
Americans. During the 1930s when there was large migration of southern Blacks to
the large cities of the northern United States, southern Whites, concerned about los-
ing a population about whom upon whom they were reliant for much manual labor,
reportedly started rumors of night doctors (Washington, 2006). Night doctors report-
edly roamed African-American neighborhoods in large northern cities and looked
for victims to become salable cadavers.
J. Marion Sims, often described as one of the greatest surgeons of the 1800s as
well as the father of modern gynecology, developed many of his surgical procedures
with slave women—some of whom he specifically purchased for this purpose. One
of his early surgical contributions was repair of fistulas which led to painful birth and
both urinary and fecal incontinence. He also performed these procedures on local
slave women for their owners (Petros, Abdenstein, & Browning, 2018). Anesthesia
at the time was not well developed and Sims reportedly performed these procedures
without any form of anesthetic (Washington, 2006). There are some reports that Sims
deliberately induced fistulas in at least one of the slave women to develop his surgical
repair technique (Washington, 2006). Sims became quite successful and well-known.
He then moved to New York City and is buried there. A statue of J. Marion Sims,
until very recently, was in Central Park. Because of protests, it was removed from
that site.
The Tuskegee syphilis study that lasted over 40 years is believed to play a major
role in African-American patients’ reluctance to cease active treatment and move to
palliative care for end-of-life conditions. In the study, conducted by the U.S. Public
Health Service, African-American men in the rural southern United States who had
syphilis were followed to study the course of the disease. The men, many of whom
were illiterate, were promised free meals and free burials. They also believed that
the medical tests that they were undergoing as part of the study, including lumbar
punctures, were treatments for their condition. The study began in 1930; 10 years
after its initiation it was established that penicillin was effective in treating syphilis.
The men were never informed of this treatment option and the U.S. Public Health
Service investigators continued to follow the men and document the course of the
illness (Reverby, 2009).
The syphilis study continued until 1972 when a social worker for the Public
Health Service expressed concern about the study to his superiors (Reverby, 2009).
When they did not respond, he informed the New York Times about the study. At
that time, the study was abruptly stopped. However, despite congressional hearings,
the surviving men did not receive a formal apology from the U.S. government until
President Clinton offered one in the early 1990s.
Since that time there have been several studies in which African-Americans were
disproportionately represented in medical investigations in which they did not give
complete informed consent and which posed some risks. For example, in the late
1980s a new measles vaccine was administered to African-American and Hispanic
children in the Los Angeles area. Parental consent was not given and in particular,
parents did not know that the vaccine being tested was sometimes given in doses 500
times the appropriate level (Washington, 2006).
Washington (2006) describes the practice of conducting uninformed sterilizations
on African-American women-primarily in the southern United States. At times, the
hysterectomy was an “add on” to another medical procedure. In some instances, it
was presented as a form of contraception while other, less invasive methods were
downplayed or not discussed (Washington, 2006).
6.2.2 Mistrust as a Legacy
This extended history of slavery, discrimination and deception in medical research,

has led many African-Americans to be mistrustful of the healthcare system. When
palliative care is raised as an option with terminal illness, a not uncommon reaction
is that the patient is being given up on and not provided the same level of care that
a middle class White patient would receive. One palliative care physician noted that
sometimes African-American patients will “come in swinging” but acknowledged
that he could understand this stance because of the history of maltreatment of African-
American patients by the U.S. medical system. Given this history, it is understandable
that many African-American patients when they deal with the healthcare system may
come across as adversarial. There is concern that family members are not going to
6.2 The African-American Community and the Health … 91
receive adequate care and the need to “come in swinging”… stems from “… doing
what they have to do to look out for their family” (Rhodes et al., 2015, p. 6).
Today, African-Americans report lower levels of satisfaction with their medi-
cal care (Searight, 2019). Family members also report lower levels of satisfaction
in their interaction with physicians-particularly around end-of-life care. A recent
study attempted to quantify mistrust. Not surprisingly, African-Americans scored
higher on the index of mistrust of the medical system than Whites (Boag, Suresh,
Celi, Szolovits, & Ghassemi, 2018). Additionally, the mistrust index was positively
associated with more aggressive end-of-life care—suggesting that patients and their
families who are less trusting of their health care providers are more likely to reject
palliative care and instead request and receive aggressive treatment, considered futile
by some physicians, until death (Boag et al., 2018).
African-American patients may be more likely to view receipt of even routine
medical care as an experiment (Jacobs et al., 2006). Narratives from a recent focus
group study on African-American patients’ use of healthcare included explicit ref-
erences to Tuskegee: “It reminds me of the Tuskegee Institute where they messed
around and they made the brothers have the disease instead of treating them… they
just wanted to see how it was going to affect them. So maybe sometimes you go,
instead of getting treated, they just want to see what it’s going to do to you and I’ll
try this and try that and they may even give you a sugar pill” (Jacobs, Rolle, Ferrans,
Whitaker, & Warnecke, 2006, p. 645).
In another study, while not mentioning Tuskegee by name, respondents expressed
concern that African-American patients, at the end of their lives, would be unknow-
ingly used for research: “That is just like experiments. People experimenting on black
people in the forties or whenever they did. All of that stuff carries over…I think it is
still happening today …. they need you as a guinea pig. They know you’re going to
die anyway. They are not trying to get you well (Jacobs et al., 2006, p. 94).
6.3 Suffering May Have Meaning
Particularly, in the African-American community, there is a reluctance to use hospice

and palliative care. Some of this hesitation likely stems from a different view of pain
and physical distress at the end-of-life compared with the dominant White European
community. While many White Europeans may view suffering as a state of physical
distress over which the individual has no control, members of other cultures have
found meaning in suffering. The fear of being in pain, without being able to control
it, seems to be a frequent theme among those requesting physician expedited death
as well as those patients who develop advance directives. Several studies within the
African-American community suggest that many African Americans may view suf-
fering from a spiritual perspective. Rather than being “pointless,” physical suffering
may be meaningful and redemptive (Kagawa-Singer & Blackhall, 2001).
In the Christian tradition, some patients may view pain as a test of their faith and
as sharing in Christ’s suffering on the cross (Black & Rubinstein, 2004). Among
Black Caribbean interviewees with cancer (Koffman, Morgan, Edmonds, Speck, &
Higginson, 2008), this theme was present with one woman analogizing her pain from
breast cancer to the tribulations of Job in the Old Testament. “In some way, I think
he, he’s tested me…To see how strong I am, how strong my faith is, how much I
believe in him…” (p. 355). By transitioning from aggressive to palliative care or
establishing an advance directive to limit treatment, African-American patients may
view themselves as abandoning their relationship with God and choosing an action
that demonstrates a loss of faith (Phelps et al., 2009).
6.3.1 The Cultural Impact of the Holocaust on End-of-Life

Decision-Making in Israel
Within the Jewish community, personal suffering may also have religious signifi-
cance. Sturman (2003) observed in Israel that Jewish patients’ and physicians’ deci-
sions at the end of life were influenced by the Holocaust experience. In one case, an
89-year-old rabbi, was on a respirator and “clinging to life.” His family, who included
a number of devout members, believed that his tenacity stemmed from his guilt from
surviving the Holocaust while many of his family did not. It was suggested that he
struggled to remain alive because of his guilt and fear of having to see these family
members in the afterlife.
The Holocaust also influenced Israeli physicians in their choice to aggressively
treat patients who were at the end of their lives even when reversal of the patient’s
condition was highly improbable. The guilt and accompanying sense of helpless-
ness from having relatives perish in Nazi concentration camps seemed to moti-
vate providers to do everything possible to maintain patients’ lives—even in the
face of futility (Sturman, 2003). Additionally, a Jewish physician treating a Jewish
patient elicits a shared sense of mission. Others’ difficulties are not simply to be idly
observed. As a community, Jewish people have a duty to one another. This duty to
a fellow Jew exists even if the patient does not want treatment; the obligation to do
everything possible to save their life remains (Sturman, 2003).
The sacredness and value placed on life also reflected an often, unspoken, agenda
of replacing Jewish lives lost in the Second World War: “There is a reluctance to give
up on any patient, no matter how hopeless the case may be, since every life…helps
to make up for those lost in the Holocaust” (Sturman, 2003, p. 98).
6.4 Life Is in God’s Hands
Patients with a strong spiritual background also emphasized that God’s power was
far greater than that of the physician. There was a belief that miracles could occur
and that healing may occur through God’s hand regardless of medical intervention.
6.4 Life Is in God’s Hands 93
In a sample of surrogate decision-makers and patients, nearly 2/3 reported that God
influenced the outcome of their loved one’s hospital course. A common theme was
that physicians could not accurately prognosticate because a loved one’s outcome
was predetermined by God: “I think it’s whether God says it’s [the patient’s] turn
to die. If you feel that God’s in control, and I do, then no matter what a doctor will
tell me, or what a doctor says, he’s only human. He doesn’t have all the answers.
And I believe that God does” (Zier et al., 2008, p. 4). Strong faith in God is seen as
overriding the physician’s prognosis: “All I can do is pray for her to continue to get
better and maybe one of these days, she can walk out of here.” “I’m very optimistic
because I know our faith is strong.” (Ernecoff et al., 2015; p. 1665).
While predetermination themes were common, other surrogates believed that
God could directly intervene in the patient’s hospital course and that physicians’
judgments were of limited validity: “…[Physicians] can say, well this person is not
going to survive… and then, here comes God plays a role and just pick him up. Could
be on their dying bed getting you know, CPR or anything and they think they gonna
lose ‘em, flatline. And they just jump back, with a heartbeat, I think that’s the hands
of God (Zier et al., 2008, p. 5).
In the U.S., physicians, themselves, varied considerably in their responses to
family members’ statements of faith in God. While patients and their families often
viewed their circumstances in religious or spiritual terms, health care professionals
were often not responsive to this perspective. Of 40 family meetings in an intensive
care unit, 15 of them included religious content from the patient’s surrogates. When
family members raised spiritual or religious issues, the physician often responded
with biomedical content as in the following exchange. After a surrogate indicated that
she was praying for the patient not to require a tracheostomy, the physician responded
“the long-term question is how to prevent the pancreatitis from happening again. It’s
not a question for now but it’s gonna be a question pretty soon, I think.” (Ernecoff,
Curlin, Buddadhumaruk, & White, 2015, p. E5).
Some physicians responded more sensitively and respectfully. After a surrogate
indicated that God is most powerful, the physician responded with “I agree. He is
more powerful.” (Ernecoff et al., 2015, p. E5). However, in general, when surrogates
raised religious or spiritual issues, physicians typically did not explore or speak
further about the topic. A common physician response was to ask the family if they
would like to speak with a hospital chaplain. Occasionally, a physician would ask if
spirituality was important to a particular patient and encouraged the family to invite
any clergy they thought would be helpful (Ernecoff et al., 2015, p. E5).
6.5 Family Loyalty
6.5.1 Protecting a Seriously Ill Loved One from Emotional

Harm
While perhaps viewed as deceptive to Western clinicians and ethicists, withholding

information from seriously ill patients is almost always guided by compassion. Zhao
(2015) provides a very touching story of protecting a spouse from knowledge of
their terminal condition in China. A man who had been married for 17 years with a
young son was diagnosed with serious lung cancer. He underwent treatment but was
not responding. His wife was worried about the emotional impact on her husband of
seeing negative test results that indicated that he was not improving. In response, she
actually took the laboratory reports, changed them, and copied them. This process
of changing test results occurred over a period of 15 months and even included
keeping a set of these altered records at the doctor’s office. The story appeared in the
newspaper and on the Internet under the title of “15 Months Weaving a Life of Love.”
The wife’s actions were praised by those who heard the story. She was portrayed
as both loving and strong for taking on all of the emotional distress associated with
her husband’s illness and protecting him from it. As he got worse, the wife did stop
the deception, but the husband never commented on it. Zhao (2015) interprets the
husband’s response is a way of conveying his appreciation to his family and hopefully
reducing their distress about his impending death (Zhao, 2015).
Protecting a seriously ill loved one or patient from emotional distress has been one
of the utilitarian arguments offered for withholding information from the patient by
physicians and family members. If one is terminally ill, often in pain, with impend-
ing death, does the emotional distress associated with knowing one’s diagnosis and
prognosis improve the quality of one’s remaining life? There is evidence that patients
probably do know that their illness is serious and prognosis grim. However, is there
any advantage, given that life is limited, in being directly confronted with this infor-
mation?
Our study of Bosnian immigrants in the United States suggested that in their home
country, direct truth telling by physicians was not the norm. Additionally, there was
recognition that there could be harm and certainly little value, in providing the patient
with this emotionally painful news. In comparing their knowledge of the U.S. system
of disclosure with physician practices in Bosnia, one respondent said:
“In this country (the U.S.), the doctor says face-to-face, you have cancer …our
doctors (in Bosnia) go around (it). You might have this, you might have that. Here
they cut you in the middle. They tell you, “You are sick and are going to die.” (Inter-
viewer: which way do you prefer?) Going around… Not straightforward (Searight
& Gafford, 2005, p. 200). Other respondents emphasized what they perceived as
needless emotional distress created for the patient by requiring them to have this
knowledge and to make treatment decisions: “I think it’s cruel to tell somebody you
have cancer and you will die.” (p. 199) “It is cruel [to ask the patient to decide]…
Because the patient is in a lot of pain.” (Seright & Gaffrod, 2005, p. 200).
6.5 Family Loyalty 95
6.5.2 Respect and Do Not Burden Elders
Particularly in Asia, family-based decision-making is seen as a way of showing both

love and respect for an older family member. Filial piety demonstrates respect by
removing the burdens of care from the loved one and treating them with the respect
and affection that they have earned by contributing to the family’s well-being for
many years. The care that parents provided their children while growing up is now
reciprocated. This includes doing everything possible to keep a parent alive. If adult
children were perceived as remiss in this duty, there would be considerable com-
munity disapproval. Even taking on a significant financial burden may be necessary
to fulfill this duty. One Korean study found that 80% of out-of-pocket healthcare
fees were covered by children of patients with 8% from the patient themselves (Lee,
2015). Adult children in Korea may lose their homes and savings to pay for parents’
hospital care even when parents overtly indicate that they do not want continued
aggressive care.
6.5.3 Maintain the Patient’s Hope
There is both implicit and explicit recognition on the part of the general public that
one’s hopefulness can play a role in illness recovery. Providing the patient with
an explicit diagnosis may dash these hopes of recovery. This theme has emerged
across multiple cultures. In Pakistan, a physician describes how she had a family
conference without the patient present to describe the father’s widespread metastatic
cancer (Moazam, 2000). The family asked the physician not to inform the father
because “how long he lives is in the hands of God in any case, and it is not right to
make my father lose hope while he is so ill.” (Moazam, 2000, p. 280).
Hope was also described as an important dimension among recent Bosnian immi-
grants to the United States. Maintaining a patient’s hope was an important part of
how physicians in Bosnia communicated difficult diagnoses: “[in Bosnia] the doctor
is always reserved… Trying not to tell the patient. The doctors always say there’s
hope, there’s different techniques… Hope was always given to the patient” (Searight
& Gafford, 2005, p. 199).
In a study of patients on kidney dialysis—predominantly White European Cana-
dians—hope was a common theme. At times, the patient’s hope was likely unrealis-
tic—“I don’t want to live on dialysis. I want to have a normal life. Hope for me now
is to get back to what I’ve lost… To work again, to be independent and live alone,
and have the life that I had.” (Davison & Simpson, 2006). The authors described
a tension between patients’ expectations that their physician would raise the topic
of advance care planning and the patient’s own focus on their current daily lives.
While the patients wanted information from the physician, they were looking for
information that would give them hope. Patients tended however, to avoid pressing
the physician for prognostic information but would use the physician’s cues to guide
whether it was appropriate to raise the topic of their future illness course (Davison
& Simpson, 2006).
6.5.4 Familismo
As has been clear throughout this book, lifelong devotion and meaningful engage-
ment with one’s family is a characteristic of multiple cultures including Hispanic
and Asian societies. Sabogal and colleagues (1987) developed a scale to assess this
construct which includes items reflecting one’s responsibility to provide support to
family members, trust that family members are reliable sources of support and can
be counted on to help solve problems, and the extent to which individual motivation
is guided by a duty to the family. The dimension of duty is reflected in scale items
such as” Much of what a son or daughter does should be done to please the parents”
(Sabogal et al., 1987). Of interest, when comparing two samples—one from Spain
and a U.S. Hispanic sample—of adults caring for a relative with dementia, the U.S.
sample’s pattern of responses suggested that family burden was not associated with
increased caregiver distress while in Spain, greater family burden was associated
with greater symptoms of depression (Losada et al., 2006). Any significant events
including life threatening illness experienced by a family member initiates a process
of family members coming together to provide support and in many instances, to
make decisions on the patient’s behalf. Sometimes to the frustration of healthcare
personnel, surgery for a member of a Hispanic family may not proceed until the
family is convened. This kinship network may include godparents, family friends,
neighbors and relatively distant relatives (Smith, Sudore, & Pérez-Stable, 2009).
6.5.5 Filial Piety
In Asian families, the care provided to aging parents by their adult children is a way
of reciprocating for the sacrifices that have been made for them. When a close family
member is ill, the family shares in the suffering. Additionally, while their loved one
is undergoing treatment, the family helps moderate distress and provides familiarity
as the patient deals with physicians and the often frightening hospital environment
The family, in their interactions with the healthcare team, represents the patient’s
identity. As part of their duty to a parent, adult children also take on the responsibility
of helping their loved one live a meaningful life during their final months (Wang,
2015). This is not a contractual style obligation but a deeply embedded web of mutual
care. Since the family is so highly valued, giving of oneself to an aging family member
is natural since one’s identity is their family: “… Only when the individual abandons
his/her natural personality to live in accordance with the ethical entity of a family can
he/she obtain true freedom and ontological self-consciousness in the family” (Cai,
2015, p. 191).
6.6 Conclusion 97
6.6 Conclusion
Blackhall et al.’s (1995) study provided quantitative information indicating that

there were differences between ethnic groups regarding the acceptability of directly
informing a loved one of a cancer diagnosis as well as the desired locus of decision-
making at the end of a patient’s life. This pattern of greater collectivism on the part of
Asian and Hispanic families has generally held up in subsequent studies. However,
numerical percentages do not describe the underlying reasons for these patterns.
Additionally, in the case of African-Americans in the United States, the desire for
aggressive treatment, rejection of hospice and palliative care, and low rate of comple-
tion of advance directives should be understood in the context of an extended history
of maltreatment and discrimination by the healthcare establishment. Understanding
the reasons for these differences also should lead to more culturally sensitive patterns
of communication with patients and their families at the end-of-life.
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Chapter 7
Conclusion: Continuing Changes
in Marriage and Family; Supporting
Diverse Perspectives on End-of-Life
Decision-Making
As is evident in the case of Mrs. Kim from Chap. 1, when confronted with serious
illness, family relationships are a key element of patient decision-making. While
clinicians, including the author, have encountered situations where the family and
the patient are at odds with one another about optimal treatment, it is important
that healthcare providers not necessarily assume that active family involvement is
a type of corrupting influence on individual patient autonomy. In the now classic
report of the President’s Commission for the Study of Ethical Problems in Medicine
and Biomedical and Behavioral Research, the Commission did conclude that if the
patient freely and knowingly gives decision-making authority to another person such
as a family member, it is permissible to exclude the patient. However, as I have
written elsewhere (Searight & Gafford, 2005; Searight, 1992), it is important that this
preference for family based decision-making be clearly documented in the patient’s
record. Additionally, the healthcare provider should clearly indicate to the patient
that if they change their mind and would like to be directly informed of their health
status and treatment options, the physician will immediately do so. It is important
to recognize that these patients have not surrendered their autonomy nor sacrificed
their independent decisional authority by delegating healthcare communication to
their family. These patients have made a decision not to be informed.
While certainly not of life or death magnitude, many of us, at times, particularly
when feeling overwhelmed, delegate decisions to others. Consider going out to dinner
with family after a very demanding day at work. You look over the menu and listen to
the waiter describe the day’s specials but are not really paying attention and at some
level, your choices for the next meal are a blur. Having to make one more decision
that day, even if it is between the fried chicken and prime rib special feels like an
overwhelming chore. With an exhausted facial expression, you turn to your spouse
or partner and say, “You know what I like; please order for me; I cannot make another
decision today.” In this common scenario, you have not sacrificed your autonomy.
Instead, as a means of eliminating another cognitive and emotional burden, you have
made an informed decision to delegate your dinner choice to a competent adult that
you trust.
102 7 Conclusion: Continuing Changes in Marriage and Family …
7.1 The Changing Family and Informed Consent
In many situations, it would be relatively straightforward to have the family involved

as a healthcare decision-maker. For example, as noted earlier, in organ donation
decisions in Taiwan, a recommended practice is to have both the patient and potential
donor as well as a family member sign the donor authorization form.
However, as family relationships in the West have become more tenuous and
unstable, requiring a family members’ involvement in key healthcare decisions may,
in some situations, not be in the patient’s best interest. Family involvement in deci-
sions is predicated on the value that their decisions are genuinely guided by what they
see as the patient’s best interests. Macklin (1987) provides a number of examples of
situations involving substituted judgment in which the decision-maker’s self-interest
appears to take priority over the well-being of the patient. For example, marriages
may end and partners go on to new relationships without formal divorce or legal sep-
aration. In the absence of a clear record denoting a decision-maker, in many states,
if the issue is legally pressed, a spouse, even though estranged from the patient for
many years, would legally be the surrogate decision-maker for the patient. While
one would hope that a surrogate’s end-of-life decisions would not be guided by eco-
nomic factors, it is certainly possible that the proxy being named or excluded from
the patient’s life insurance policy, could influence decisions made about an estranged
spouse’s care.
Indeed, until recently in the United States when same-sex marriages were legally
recognized, the long-term partner of a seriously ill patient in a same sex relationship,
had no legal standing unless they were formally named as durable power of attor-
ney. During the AIDS crisis, situations arose in which an adult child’s parent, even
though cut off from their adult child for many years, was the legal decision-maker
for patients with cognitive impairment from AIDS-related dementia. The estranged
parent’s choices overrode that of the patient’s partner of 20 years.
One of the often unrecognized outcomes of greater longevity is the opportunity
to have a greater number of intimate relationships in later life. For example, former
President Clinton’s mother was married four times. She reportedly included the
surnames of all spouses in her “chosen” name: Virginia Dell Blythe Clinton Dwire
Kelly. At the time of her death, she had been married to Richard Kelly for 12 years.
President Clinton, who was in his late 40s at the time of his mother’s death, certainly
had a much longer standing and stable relationship with his mother than any of her
respective husbands. However, absent a formal durable power of attorney, if unable to
make medical decisions for herself, President Clinton’s mother’s husband of 12 years
would be the surrogate decision-maker in many states.
While there is no evidence that there were issues of this type in President Clinton’s
family, other relationships have raised questions. The late media personality, Anna
Nicole Smith, at the age of 26 married J. Howard Marshall, an 89-year-old billionaire.
Thirteen months after they were married, Marshall died. Smith indicated she had been
promised half of Marshall’s estate and her right to pursue her interest in the estate
was affirmed by the US Supreme Court. Smith died of a prescription drug overdose
7.1 The Changing Family and Informed Consent 103
before the legal case was completely settled. This example illustrates how the legal
definition of family relationships takes precedence over historical or emotionally-
based relationships in end-of-life care. The legal system is individually focused and
relies heavily on contractual documents. As the Schaivo case shows, end-of-life
decisions that take place through the court system will be long, drawn out, and often
elicit conflict between family members—a process unlikely to be in the patient’s best
interests.
7.2 The Future of End-of-Life Decision-Making
There is growing evidence that the Western emphasis on individualism and autonomy
is gradually becoming more widespread internationally. This was evident in Cheng
et al.’s (2015) study comparing Korea, Taiwan and Japan. The Japanese stood apart
from their Asian neighbors in placing somewhat more emphasis on the individual
and encouraging a norm of disclosing medical bad news to the patient themselves.
Moreover, while the family’s presence, particularly when physicians were providing
prognostic information, was seen as very important in Korea and Taiwan, only about
half of Japanese physicians viewed the family’s presence as important (Cheng et al.,
2015).
Internationally, while research suggests there is a growing trend towards indi-
vidualism with diminishing emphasis on collectivism, communitarians, community-
oriented utilitarians, and those concerned with preserving cultural diversity continue
to add their voices to the discussion. Autonomy, while typically seen as empower-
ing, and the basis of self-determination, can alternatively be construed as isolating
patients from important sources of social support. Hardwig (1990) emphasizes that
despite a legal system focused on assigning responsibility to individuals, seemingly
personal decisions do influence others’ lives. Empowering individuals cannot ignore
the impact that decisions such as initiating or ceasing cigarette use, undergoing a
vasectomy, or allowing hypertension to remain untreated, have on one’s family and
other close relationships (Hardwig, 1990, 2000).
Even more true today than when Hardwig published his original article, in a con-
temporary medical environment concerned with cost-containment, the family has
been shouldering the increased burden of caring for aging parents and grandparents.
Other trends placing greater demands on the patient’s social network include pro-
gressively briefer hospitalizations with patients left to recover at home, more surgical
procedures are performed on an outpatient basis, and physical therapy conducted at
home or through self-directed exercise protocols. While many patients prefer being
at home and home health care is far less expensive than a hospital stay, this domestic
care model places greater responsibility on family members for day-to-day patient
care (Hardwig, 1990).
In terms of disclosing serious diagnoses such as cancer, it is important that physi-
cians carefully consider the context rather than automatically providing full diagnos-
tic and prognostic information or, alternatively, withholding that information from
the patient. Shahdi (2010) notes that assumptions about the preferences of patients
should not be made based upon ethnicity, gender or age. A systematic review of
the question of physician disclosure of serious illness found that there was greater
diversity in preferences among non-White European samples than among White
Europeans (Larkin & Searight, 2014). Thus, any choice to allow the patient’s culture
to dictate how to proceed with end-of-life discussions may well be incorrect. For
physicians, despite greater attention to the topic in medical schools, residencies and
continuing education programs, disclosing a terminal diagnosis to a patient and/or
their family, still remains, a difficult, emotionally charged, challenge. It is under-
standable that this anxiety might be greater with patients of ethnic backgrounds
different from that of the physician, themselves. Nondisclosure will hopefully be
guided by patient preference rather than by unrecognized physician anxiety about an
emotionally difficult patient and family encounter.
While collectivist cultures are moving towards individualism, recent writing on
physician disclosure of serious illness in the United States has suggested that the
medical community, influenced by a utilitarian ethic, is re-examining the value of
limited sharing of information with patients (Epstein, Korones, & Quill, 2010). If
a physician’s disclosure has the potential only to harm and the content is deemed
by the physician to have little meaningful value for patient decision-making, it may
be ethically permissible to withhold the information. (Epstein, Korones, & Quill,
2010). In recent years, there have been thoughtful commentaries by U.S physicians,
including those who have developed protocols for disclosing medical “bad news,”
about withholding medical information from patients when appropriate. Information
which may not be beneficial to the patients include the potential for low probability
adverse events associated with a procedure that can obscure key decisions that the
patient needs to make. In circumstances in which information is not disclosed, it is
necessary to reflect upon the balance of beneficence and nonmaleficence. In these
discussions, when a patient is silent or changes the subject, it likely that they are
communicating a desire not to be provided with additional information at this time
(Epstein, Korones, & Quill, 2010). Probably one of the most common examples of
this phenomenon are pharmaceutical advertisements on television in which there is a
rapid recitation of all possible side effects—often including death. Another situation
in which information may be withheld from is when non-urgent incidental findings
arise while the patient is being investigated for a condition of significance such as
cancer.
Epstein et al. (2010) also make the important point that information “dumps,” in
which the legal requirements of reciting all possible risks take precedence over patient
understanding, may not necessarily enhance patient autonomy. In fact, because of the
inability to prioritize large amounts of unfamiliar, yet personally relevant, medical
information, providing all details to follow a guideline of complete disclosure may
make it difficult for the patient to participate meaningfully in their care.
In the United Kingdom, the General Medical Council’s (2008) policy is that, in
general, patients should be aware of their medical condition, their prognosis and
treatment options. However, in situations involving dialysis, the General Medical
Council supports physicians if they determine that treatment would be non-beneficial.
7.2 The Future of End-of-Life Decision-Making 105
Additionally, if a judgment is made that the treatment would not be beneficial, physi-
cians are not required to disclose options such as dialysis and actually may withhold
information about potential treatments if they believe that providing the information
might psychologically harm the patient. For example, if a patient is in need of stent
placement but has been acutely anxious about the possibility of having a heart attack
like the one afflicting their younger brother, the procedure actually may go ahead
without complete informed consent since the patient could refuse treatment deemed
medically necessary. In practice, how can a clinician balance the legal and ethical
requirements for informed consent with either personal or culturally held views about
non-disclosure of medical “bad news?”
7.3 Recommendations
In considering the accounts of family-based decision-making with concepts such as

filial piety guiding surrogate decision-making, it is clear that these models, which
continue to be common in Asian and Hispanic cultures, are inconsistent with indi-
vidually focused living wills and durable powers of attorney in their current forms.
In China, it has been suggested that appointing someone as a proxy decision-maker
such as a durable power of attorney, should be a collective decision of the fam-
ily. Importantly, while the durable power of attorney is certainly recognized by the
patient’ healthcare team, the person deemed DPOA should have the support of the
extended family. Any written advance directive should be signed by the patient and
all significant family members (Yang, 2015).
Padela and colleagues have called for a second order autonomy consistent with
multicultural health care in an increasingly “flat” word (Padela, Malik, Curlin, & De
Vries, 2015). In this approach, the patient would voluntarily choose to have choices
made about their care by their family. They may also choose to have all informa-
tion shared with family members as well (Padela et al., 2015). This choice can be
documented with signatures from the patient, healthcare professionals, and relevant
family members. This approach would meet the legal requirements for documented
informed consent in countries such as the United States while recognizing alterna-
tive approaches to end-of-life decision-making. In countries such as Pakistan, where
families appear to want the physician to make the decision (Moazam, 2000), relevant
family members can document their agreement.
In discussions with patients, a useful starting point is to ask the patient directly
about the amount of information they would like: “Some people would like a good
deal of information, others do not; What about yourself?” In order to assess whether
patients prefer family-based or even physician centered decision-making, they can
be asked directly about how they would like decisions to be made. Physicians should
encourage patients to indicate the person or persons that they trust in assisting them to
make good quality medical decisions (Brown, Bekker, Davison, Koffman, & Schell,
2016).
In terms of ethical theory, principalism is spreading well beyond the borders of the
United States and northern Europe. Principalism, when applied in its “pure” form,
could guide decision-making in multiple cultural contexts. The rationale for protect-
ing patients from a terminal diagnosis can be accounted for through beneficence and
nonmaleficence. Additionally, in applying the model, clinicians and ethicists should
be able to justify decisions in terms of prioritizing the principles. International and
cross-cultural acceptance of principlism, however, would require that autonomy is
no longer “first among equals” (Gillon, 2003) but is weighted equivalently with the
other three principles.
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SPRINGER BRIEFS IN ETHICS

More information about this series at http://www.springer.com/series/10184

ISSN 2211-8101 ISSN 2211-811X (electronic)

1 History and Background of End-of-Life Decision-Making

3 A History of Physician “Truth Telling,” Informed Consent,

5.3 Organ Transplantation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71

Don’t talk that way.

1.1 Seminal Cases Highlighting the Importance of Advance

1.1.1 Karen Ann Quinlan

1.1.2 Nancy Cruzan

1.2 Implications of the Quinlan and Cruzan Cases

1.3 The Patient Self-Determination Act (PSDA)

1.4 The Doctrine of Informed Consent

more invasive procedure, resulting in removal of significant beast tissue, would be

1.5 The Blackhall et al. Study

Within several years of the PSDA’s initiation, a provocative study on cross-cultural

1.6 Cross-Cultural Differences in Values at the End of Life

Culturally based objections to ADs were sometimes less tangible—there was a

1.7 The Era of the Patient as an Autonomous Consumer

The growing emphasis on “patient as expert” contributed to a physician-patient rela-

1.8 Medical Technology and the Rise of Subspecialty Care

2.1 Models of Ethical Decision-Making

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2019 15

2.1.1 Utilitarianism (Consequentialism)

Utilitarianism, generally associated with Jeremy Bentham (1748–1832) and John

2.1.1.1 “Big Picture” Utilitarianism in Health Care

2.1.1.2 QALYS, Health Care Policy, and Utilitarianism

Utilitarian thinking is implicitly involved in any type of rationing system. While

treatments. Mathematically, in assessing the potential benefit of an intervention such

2.1.2 Kant’s Deontology

The term deontology emphasizes duty—our behavior towards others is rooted in

2.1.3 Virtue Ethics

that disclosing diagnostic and treatment information to patients can be harmful.

Beauchamp and Childress (2009) reviewed existing philosophical approaches to

(non-malificence). Physcians who participate in expediting a patient’s death taint the

Communitarianism is not a singular ethical theory. A shared element in communi-

2.1.5.1 African Medical Ethics

Confucianism exerts a significant influence on end-of-life care in mainland China,

3.1 Brief History of Physician Disclosure of Diagnostic

While patients’ and family preferences for nondisclosure of life-threatening illness

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2019 29

patient’s and family’s emotional reaction; and E—encourage emotional expression

3.2 Legal Issues in End-of-Life Decision-Making: Selected

3.2.1 United States

of advance directives. Additionally, the absence of a record of the patient’s wishes

Israeli health law is characterized by a combination of secular and Jewish religious

of this diversity stems from different interpretations of Jewish law by rabbinical

utilitarianism—specifically directing medical resources to those who can would be

3.3 Religion and the End of Life

Medical ethics in the West is generally discussed from a secular perspective.

An overarching duty of Muslims is to submit completely to Allah or God. Islam,

When death is imminently unavoidable, it is acceptable for the physician to refuse

4.1 Whether and How to Tell: Physician—Patient

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2019 45

4.2 Cross Cultural Encounters in the U.S. and Canada:

4.2.1 Culture and Communication at the End of Life

In some European countries, particularly in the Mediterranean region, as well as in

4.3 Family Dynamics

4.3.1 The Individual and Their Family