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End-of-Life Decision Making across Cultures

Article  in  The Journal of Law Medicine & Ethics · June 2011

DOI: 10.1111/j.1748-720X.2011.00589.x · Source: PubMed

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End-of-Life A
s is evident from the other articles in this spe-
cial issue, end-of-life treatment has engen-
dered a vigorous dialogue in the United States
Decision Making over the past few decades because decision making at
the end of life raises broad and difficult ethical issues

across Cultures that touch on health professionals, patients, and their

families. This concern is exacerbated by the high cost
related to the end of life in the U.S. Moreover, in light
of demographic patterns, progressively scarce health
Robert H. Blank care resources, and an expanding array of life-saving
technologies, decisions at the end of life are becom-
ing problematic matters of public and, thus, scholarly
concern in most countries. Issues at the end of life are
central not only to bioethics but also raise important
ancillary policy dimensions.
Until recent decades, death and the dying process
were largely the matter of private decisions made
within specific religious and cultural frameworks.
Increasingly, however, questions of how we make deci-
sions at the end of life have become a matter of pub-
lic policy and of ethical debate. Advances in medicine
have the capacity to extend life indefinitely, but often
with poor quality and escalating dependence on medi-
cal technologies. Demographically, the aging popula-
tions in most developed countries and the increasing
incidence of AIDS and other chronic diseases in devel-
oping countries promise to complicate end-of-life
decision making in the coming decades. As a greater
proportion of societal resources are expended at the
end of life, the ethical and policy issues are bound to
intensify. Thus, the more we can understand, deliber-
ate, and frame the issues now, the better the chance
we will have to deal with their mounting consequences
that face us.
The literature on treatment of terminal patients,
euthanasia, brain death, and other issues related
to dying has expanded significantly in the recent
decades.1 There remains, however, a scarcity of pub-
lications on how these issues are handled in different
cultural settings across countries. Furthermore, a lim-
itation with many comparative studies in health policy
and bioethics is that they tend to compare only a few,
primarily western, countries, thus giving a skewed
picture of the problems and context.2 As a result, the
debates over end-of-life issues have become largely
framed by western practices and values. This failure to
adequately include the context of end-of-life decisions
in other countries has led to a situation where much
of bioethics and health policy is parochial to western
nations, predominantly the U.S. As a result, we are
missing richness of other cultures in designing poli-

Robert H. Blank, Ph.D., is a Professor of Political Science at

the University of Canterbury in Christchurch, New Zealand.

cost and end-of-life care • summer 2011 201

S Y MPO SIUM

cies. Moreover, this scholarly focus on the U.S. risks Physicians it should include control of pain and other
losing relevance and credibility abroad and produces symptoms, psychosocial support for both the patient
the uncomfortable assumption that only western val- and family, medical services commensurate with the
ues are acceptable and should serve as the norm. needs of the patient, and specially trained personnel
This article first summarizes the broad range of with expertise in care of the dying and their families.3
issues surrounding end-of-life decision making since What types of hospices operate, and what level of pal-
often articles and books focus on one aspect to the liative care and pain management are accessible to the
exclusion of others. It then discusses the need for more dying patient in each country?

In light of demographic patterns, progressively scarce health care resources,

and an expanding array of life-saving technologies, decisions at the end of
life are becoming problematic matters of public and, thus, scholarly concern in
most countries. Issues at the end of life are central not only to bioethics
but also raise important ancillary policy dimensions.

comparative country research on death and dying and Conversely, what, if any, boundaries or cut-off
summarizes the debate over policy convergence. Atten- points exist for aggressive treatment of a particu-
tion then shifts to the importance of culture and how lar category of patient, whether an end-stage cancer,
cultural differences shape end-of-life decisions both AIDS or Alzheimer’s patient, or a terminally ill elderly
within and across countries. Finally, it examines the patient? Under what circumstances are cardiopulmo-
implications of a study of end-of-life policies across 12 nary resuscitation and artificial hydration and nutri-
disparate countries for a much broader range of issues tion used? Are they even available? For instance, with
surrounding death and dying. few exceptions, artificial feeding is most prevalent in
the U.S. and hardly used in most countries, even some
The Issues Surrounding End-of-Life European ones. “Curiously, many cultures see stop-
Decision Making ping eating as a sign of dying and not its cause. They
There are numerous overlapping issues that together never even consider the use of a feeding tube.”4 Also,
define the context of decision making at the end of life. do individuals generally die in intensive care units,
Although most attention in the West has focused on hospital wards, nursing homes, hospices, or at home?
the elderly or on cancer patients, in some countries Moreover, how is such care funded, and who ulti-
the focal point is on younger adult AIDS patients or mately makes the life-ending decision in cases where
on children dying from malnutrition or infectious dis- the patient is unable to do so: doctors, the family, eth-
eases. In each of these categories, the responses to the ics committees, the government, or some or all of the
problems they present can vary significantly across above?
countries. Basic questions relate to what institutional Accompanying the medical dimensions of policy
services exist for care of the critically or terminally ill; making at the end of life are the social and legal aspects.
how, where, and by whom these patients are treated; In some western countries, considerable emphasis in
how aggressive and costly the treatment regime is recent decades has been directed toward empower-
(e.g., what availability of intensive care units); who ment of the patient or patient autonomy. Obviously,
makes the final decisions as to the level of care given; truth telling is an important aspect of this dimension.
and who pays the escalating costs of dying? A wide variety of legal mechanisms have been created
More specific questions regarding the end of life toward this end in some countries, but by no means
relate to availability of medical specialists and ade- most. The stated goal of advance directives, whether
quate pain management, palliative care, and hospice living wills or powers of attorney, is to return to the
services. Hospice care may be provided either in a facil- individual the ability to control the dying process, pri-
ity or in the home, but the basic concept of hospice is marily by refusing life-extending interventions, but
one of comprehensive care for the dying. Although the this is far from universally accepted. There are con-
physical facilities may be very extensive or quite mini- flicting views on their effectiveness, and cultural back-
mal, according to the American Academy of Family grounds in various countries have resulted in different

202 journal of law, medicine & ethics

 Robert H. Blank

views on what role they should play and on their use A broad array of end-of-life issues, therefore, from
even where legal. At this moment in time, however, how and where the dying are treated, to who makes the
the possibilities of developing a global approach on decision to withhold or withdraw treatment or allow
advance directives extend no further than comparing physician-assisted suicide, and to how we define and
different cultures and in this way trying to nurture measure death elicit considerable public and profes-
the debate and clarify the thinking about end-of-life sional debate. This is not surprising because decision
decisions.5 making at the end of life is among the most intensely
Related to advance directives are various policy ini- emotional and ethically charged issue areas. Critical
tiatives and debates over the concept of euthanasia, to understanding these issues in a broad sense is the
itself loaded with complex and varied meanings both extent to which they are common across nations and
within and across cultures and countries. Some com- cultures or, contrarily, vary from one country to the
mentators distinguish between passive and active, vol- next. As noted in the International Bioethics Commit-
untary and involuntary, and other categories of eutha- tee’s Report on the Possibility of Elaborating a Univer-
nasia, thus allowing for support of some but not other sal Instrument on Bioethics, the meaning and signifi-
types. Others argue that such distinctions are artificial cance of life and death are inextricably tied to culture
and that all forms of euthanasia are morally wrong and and tradition.6
must thus be outlawed. Still others argue that the dis-
tinctions are of little help and that individuals should The Need for Comparative Country Research
not be precluded by law or moral codes to make their In spite of the difficulty of comparing health care
own choice as to how and when to die. Although the across countries, comparison is an appealing strategy
most vehement opposition to euthanasia tends to cen- for social enquiry. It adds complexity and nuances to
ter on those cases where active assistance of a third ethical principles and policies. Cross-country compar-
party is required, the debate over doctor-assisted sui- ison is not only interesting but also provides a basis
cide frequently is deliberately linked with cases involv- for identifying the variety of options that exist in fram-
ing the withholding or withdrawing of treatment, thus ing biomedical issues. Comparative studies also give
again clouding the lines between passive and active us insights as to what works or does not work within
types of euthanasia. The question remains as to how a wide variety of institutional and value contexts and
different countries define and deal with withholding illuminate the commonalities of problems and vari-
or withdrawing particular types of intervention or ables across countries. Given the complexity of end-
with more direct forms of termination. of-life issues, only with a thorough knowledge of what
Another exigent issue is how we define the death occurs across many countries can we generate the evi-
of a human being. In response to the development of dence necessary to consider the full array of available
life-sustaining technologies and the need for organs options.
for transplantation, some countries have accepted a In recent years, there has been considerable theo-
legal definition of brain death. There are two critical rizing over the concept of policy convergence that
dimensions to this issue. The first is the conceptual contends that as countries industrialize they will
interpretation of what death means in the context of converge towards the same policy mix.7 For instance,
medical technology, since the traditional understand- some scholars argue that there are global trends in
ing of death as the irreversible cessation of cardio- the formation of health policies, and that the objec-
pulmonary functions has been confounded by tech- tives and activities of health systems internationally
nological means of prolonging these functions. The are becoming more alike.8 Convergence is bolstered by
second dimension centers on the appropriate clini- globalization and by the development of an interna-
cal tests to be used to determine that a patient is in tional health forum through the internet where people
fact dead, especially when the patient’s life has been from all countries can comparison shop. In addition,
protracted by technological means. Because technolo- explicit efforts by international organizations such as
gies in both of these areas are advancing rapidly (in the OECD, WHO, and the EU help prepare the foun-
the first instance life-sustaining technologies and in dation for what Harrison et al. refer to as “ideational
the second diagnostic imaging technologies that indi- convergence.”9 Convergence is intuitively attractive
cate the presence or absence of characteristic types of because similar problems potentially make for simi-
activity in specific regions of the brain), and because lar solutions. This assumption is also supported by the
of the linkage of brain death to organ transplantation, fact that ultimately there are only a limited number
the definition of death has become a contentious issue, of policy instruments available to address a particu-
and one that varies from country to country. lar problem, thus suggesting that function rather than

cost and end-of-life care • summer 2011 203

S Y MPO SIUM

politics informed by historical legacy or culture shapes vention. Not surprisingly, the economic wealth and
policies. cultural heritage of the country are most important
In contrast, critics of convergence argue that it determinants of where people die. More broadly, in
oversimplifies the process of development and under- their study Cox et al. conclude that there are signifi-
estimates significant divergence across countries.10 cant cultural differences regarding advance care plan-
Convergence, they contend, downplays the impor- ning and end-of-life decision making that represent
tance of country-specific factors other than economic major challenges for health care providers. Moreover,
development and neglects the fact that most studies “advance directives, which are generally accepted in
finding evidence of convergence do not find it appli- western civilization, hold little or no relevance in other
cable across the board, thus allowing for divergence in cultures.”13 Similarly, for the most part it is only in the

Comparative studies also give us insights as to what works or does not work
within a wide variety of institutional and value contexts and illuminate
the commonalities of problems and variables across countries. Given the
complexity of end-of-life issues, only with a thorough knowledge of what
occurs across many countries can we generate the evidence necessary to
consider the full array of available options.

other areas. For instance, a cross-national study of the U.S. that we even consider artificially feeding patients
health systems of nine developed nations found some with end-stage Alzheimer’s disease or other dementias
convergence of ideas but considerable variation in or feel that we are starving a patient to death by with-
policy.11 Countries continue to adopt diverse and often holding artificial feeding machines.14
culture-bound strategies to deal with the similar prob- In their study of India and Germany, Chattopadhyay
lems facing them. Therefore, while one can selectively and Simon contend that culture is crucial because it
find evidence of convergence, it is by no means cer- creates the context within which individuals experi-
tain, inclusive, or consistent and has not necessarily ence life and comprehend moral meaning of illness,
translated into similar values, policies, or even policy suffering, and death. “The ways the patient, family
directions across countries. and the physician communicate and make decisions
The concept of convergence, however, is important in the end-of-life care are profoundly influenced by
for end-of-life decision making because if it is viewed culture.”15 For instance in India, where illness is more
as inevitable, there will be accompanying pressures a shared family affair than an individual incident, a
to converge in areas that might be counterproductive physician is likely to respect the family’s wishes and
to the unique needs and value systems of particular withhold the truth about the diagnosis of a fatal dis-
countries. Likewise, there is a danger of making the ease to the patient while in Germany a physician is
assumption that ethical frameworks will converge to legally required to inform the patient about the dis-
a western model despite continued evidence of a wide ease. Similarly, while advance directives are virtually
divergence across countries in bioethical perspectives. non-existent in India, in Germany they are regarded
As argued by Macer and others, bioethics has had a as mandatory and health care is covered by insurance.
distinct western bias and focuses on concepts that may Chattopadhyay and Simon conclude that the explora-
have little relevance to other countries.12 Three-quar- tion of finding a common ground of morality across
ters of the world’s population is not linked to concepts different cultures while acknowledging and respecting
such as individual autonomy and truth telling that are cultural diversity remains a “formidable challenge for
assumed by the conventional western bioethics com- the bioethicists.”16
munity as critical in medicine. Another study found that Japanese medical resi-
dents were more likely than U.S. residents to include
Importance of Culture and Religion the family when disclosing diagnosis and prognoses
Despite the heavy emphasis in the West on intensive of terminal illnesses — an act which is speculatively
care and medical interventions, most people around credited to the Japanese culture of making decisions
the world die at home without any medical inter- as a group.17 Moreover, in a comparative study of Ger-

204 journal of law, medicine & ethics

 Robert H. Blank

many and Israel, religion was found to be a powerful Thoughts or conversations about a premature death
explanatory factor in divergent end-of-life policies as are ill favored and in that sense a taboo.25 Moreover,
enunciated by national commissions.18 In relation to the Confucius culture emphasizes that the family is
the acceptance of euthanasia, because of seculariza- the original source of everything and thus family val-
tion, religious people in the Netherlands tend to be ues are placed above the individual. Although families
more liberal and progressive as compared to coun- in many countries often insist in very aggressive care
tries where there is still a more conservative religious that represents a net harm to the dying patient, in
climate like Italy, although Christian people in the Asian countries disagreements between a patient and
Netherlands are still more likely to be against assisted his or her family about end-of-life care may result in
suicide when compared to their non-believing fellow- medical professionals who too often follow the opin-
countrymen.19 ions of the family members rather than those of the
Likewise, Searight and Gafford argue that the U.S. patient.26
model of health care that values autonomy in medical Although the Asian cultures might diverge most
decision making is not easily applied to some racial from western values, there is considerable variation
and ethnic groups. “Cultural factors strongly influence within the West as well. In a major study of decisions
patients’ reactions to serious illness and decisions by patients, families, and health care providers about
about end-of-life care.”20 There remain major differ- medical care at the end of life in 37 European ICUs,
ences across cultures regarding communication of culture was found to have a major impact on end-of-
“bad news,” the locus of decisions and attitudes toward life decisions across the regions of Europe. End-of-life
advance directives, and end-of-life care. Even within decisions regarding cardiopulmonary resuscitation,
U.S. there are differences by race. One recent study brain death, withholding or withdrawing treatment,
concluded that a large majority of seriously ill older and active shortening of the dying process all reflected
Latinos favored family-centered decisions and limited statistically significant differences among regions that
patient autonomy.21 Despite preferring less aggressive, could be attributed largely to cultural factors.27 Another
comfort-focused end-of-life care, few had documented study, drawn from the same data set, examined the
or communicated this preference, thus placing them influence of religious affiliation and culture on end-of-
at risk of receiving high intensity care inconsistent life decisions in intensive care units. They found that
with their preferences. Similarly, another study found withholding occurred more often than withdrawing if
that hospice use is low among Latinos and that cul- the physician was Jewish, Greek Orthodox, or Muslim,
tural values of denial, secrecy about prognosis and a while withdrawing occurred more often for physicians
collective, family-centered system influenced hospice who were Catholic, Protestant, or had no religious
decisions in Latinos but not non-Latinos. This results affiliation. Thus, “significant differences associated
in a significant dilemma: how to discuss hospice with with religious affiliation and culture were observed for
a patient and family who prefer not to discuss a termi- the type of end of life decision, the times to treatment
nal prognosis.22 limitation and death, and the discussion of decisions
In many Asian cultures, it is perceived as unnec- with patient families.”28
essarily cruel to directly inform the patient of a can- An increasing number of studies, then, have dem-
cer diagnosis.23 Thus, in contrast to the emphasis on onstrated that the way health care professionals, the
truth telling in the U.S., health care professionals in patient and his/her family communicate, interact
other countries frequently conceal critical diagnoses and make decisions in health care setting can be pro-
from patients out of deference to respect or potential foundly influenced by the interplay of the meaning of
harm to the patient. Furthermore, the U.S. emphasis health and illness, existing social norms, moral val-
on patient autonomy might conflict with filial piety, ues, and a culture-specific sense of professional duty
an orientation of the extended family where illness toward patient care.29 Cultural variation particularly
is considered a family event not an individual occur- across countries has been recognized as a key factor
rence.24 It is common practice in Asian cultures for in providing care at the end of life.30 In many cultures,
health care providers not to disclose the complete filial duties and sense of responsibility in interper-
truth of the illness, especially to a patient with ter- sonal relationships may form the principal basis for
minal cancer. The responsibility of telling the truth is non-disclosure. For example, in Italy, disclosing a
left to the family, but mutual silence prevails between diagnosis of cancer is believed to disrupt the seren-
patients and families when discussing medical issues ity of the terminally ill.31 For individuals of Hispanic
and poor communication persists. In Taiwan, for and Asian origin, disclosure of a terminal prognosis
example, the public is reluctant to talk or think about removes all hope and may be harmful to the patient.
death, preferring not to consider death until it occurs. African American patients generally are more desir-

cost and end-of-life care • summer 2011 205

S Y MPO SIUM

ous for life-sustaining treatment than comparable 2. What proportion of health care costs are
whites; they are less likely to decline life-sustaining expended in last three months of life? The last
treatment irrespective of illness severity and largely six months of life?
reject assisted death.32 3. What proportion of population dies in inten-
Notwithstanding its important influence on end- sive care units, hospital, hospice, home?
of-life decisions, cultural diversity is often marginal- 4. What proportion dies with some form of
ized in discussions in medicine and bioethical issues.33 advance directive? What forms of advance
Also, while the literature on bioethical issues related directives are available? Are they binding?
to the treatment of terminal patients and other issues 5. What is the level of availability to pain
related to death and dying has expanded consider- management?
ably in the recent past and there are many single- 6. What is the mix of high technology and pallia-
nation studies, the few genuine cross-national studies tive care?
on end-of-life care that have been published include 7. What are cut off points for aggressive care?
principally western countries. Thus, it appears there Who decides? What is legal definition of
remains a gap in understanding of the end-of-life care death?
and decision-making processes from an East-West 8. What government policies, if any, are operative
cross-cultural perspective. in end-of-life decisions?
9. What policies, if any, are there for assisted
End-of-Life Context in Twelve Countries suicide/euthanasia?
This section is a summary of the findings of a book34 10. What agents are most responsible for mak-
that brought together ethical and policy experts from ing these decisions (a government agency, the
a range of countries in order to examine how end-of- medical community, ethics committees, the
life policies vary across these countries, what country- family)?
specific factors influence them, and how terminally ill 11. What role does age play, if any, in decision
patients are treated by the respective health care sys- making at end of life?
tems. As noted above, few works previously examined 12. What factors unique to the country (cultural,
a full range of these issues across more than several social, religious, economic, etc.) are critical for
nations. Even the broader literature on comparative understanding end of life decision making in
health policy has tended to include only industrialized, that country?
primarily western, countries, thus giving a skewed
picture of the problems and context. As a result, the In the end, emphasis given each topic varied widely
conceptual debates over various health policy issues, across the chapters. The fact that many authors were
including end-of-life decision making, have become unable to uncover even rough data on many of these
largely framed by western practices and values. The factors, especially on the first four questions, is itself
objective of the book, therefore, was to expand the pre- important in demonstrating the variation in the state
vailing boundaries of comparative study by including of end-of-life policy across these countries.
countries that represent a broader range of cultural, In order to provide a meaningful range of case stud-
economic, and ideological dimensions. ies, 12 countries were selected representing a mix
The findings make it clear that ethical issues as of economic, religious, and cultural contexts about
framed in affluent countries dominated by a liberal/ equally from the West and non-West. They range in
capitalist value system cannot easily be extrapolated size from six million in Israel to India and China with
to countries with less individualistic cultures or those over one billion each. There is also substantial varia-
that lack the economic resources necessary to achieve tion along economic lines. While European countries,
such ends. Although there is considerable variation Japan, and the U.S. all have a per capita GDP well
across western nations (and in many cases within over $30,000, India and Kenya have only a fraction
them, as noted above) regarding end-of-life policies, of that. In terms of health, two variables that serve as
these differences are even starker in this wider sample very rough indicators of the health status of a popula-
of countries. tion are life expectancy at birth and infant mortality
In order to provide a starting point for coverage and rates. Life expectancy is 82 years in Japan and over 80
facilitate comparative data, contributors were asked in Israel, but only about 66 years in India and 58 years
where possible to address these questions and issues: in Kenya. Likewise, infant mortality rates vary widely
from 2.8/1000 births in Japan to over 50/1000 in
1. What are the estimated costs of dying, per per- India and Kenya. Moreover, it might be expected that
son and aggregate? countries with rapidly aging populations face pres-

206 journal of law, medicine & ethics

 Robert H. Blank

Table 1
Variation by Country on Selected Variables

a b c d e f
Brazil 199 10,100 26.7 6.4 72.0 22.6
China 1339 6,600 19.8 8.1 73.5 20.3
Germany 82 34,100 13.7 20.3 79.3 4.0
Israel 7 28,400 27.9 9.9 80.7 4.2
India 1157 3,100 30.5 5.2 66.1 50.3
Japan 127 32,700 13.5 22.2 82.1 2.8
Kenya 39 1,600 42.3 2.6 57.9 54.7
Netherlands 17 39,500 17.4 14.9 79.4 4.7
Taiwan 23 32,000 16.7 10.7 78.0 5.3
Turkey 79 11,400 27.2 6.1 71.9 25.8
U.K. 61 34,800 16.7 16.2 79.0 4.8
U.S. 307 46,400 20.2 12.8 78.1 6.2

a. Population in millions (2010) d. Population over 65 (2010 est.)

b. Gross Domestic Product per person, in U.S. dollars (2010 est.) e. Life expectancy at birth (2010 est.)
c. Population under age 15 (2010 est.) f. Infant mortality rate, deaths per 1000 births (2010 est.)
Source: Data from World Factbook, 2010.

sures different than those with relatively young pop- are enlightening, although not surprising. In some
ulations. Among these countries there again is wide cases, these studies mark the first time this subject has
variation: counties such as Brazil, Turkey, India, and been discussed in an English language publication,
especially Kenya have high proportions under age 15, and in several cases in any publication. The cases on
while countries such as Germany, the U.K., and Japan Brazil, China, India, Israel, Japan, Kenya, Taiwan, and
are dealing with large older populations. Turkey, especially, provide valuable insights into the
Likewise, cultural factors and social values vary importance of culture and religion, and demonstrate
across countries and in some cases were found to be how narrowly this subject has been framed in the pre-
most crucial for end-of-life decision making. This dominant literature. These findings reaffirm the view
study reiterated that, despite what much of the bio- that conventional western-based bioethics must make
ethics literature assumes, values dominant in the clear its unique culture foundations and, thus, its lim-
West such as individual rights, lifestyle choice, and the its. Even in western countries, however, these chap-
heavy dependence on medical fixes, are not universals ters illustrate how historical and cultural factors have
but rather exceptions.35 Moreover, as discussed above, created significant differences concerning end-of-life
given increased cultural diversity within western policy, and explain, for instance, why the Netherlands
nations, there can be strong cultural and value divi- might embrace assisted suicide while neighboring
sions within a country that are important in defining Germany has not.
end-of-life policies. Religious factors are particularly The analysis here demonstrates that end-of-life poli-
critical dimensions for death-related policies, and the cies across nations vary both in terms of substance and
single most important influence in some countries. refinement. Although all countries were found to be
Moreover, social structures, particularly the impor- addressing some of the issues surrounding end-of-life
tance of the family and the role of women, can be decisions, the importance of culture and economics
central to care of the terminally ill and in setting the cannot be overestimated when dealing with the pro-
boundaries of such care. In many countries extended foundly emotional subject of death. “Death policy” is
families and communities still have a vital role to play, not an area that most medical professionals and politi-
while in other countries even the nuclear family seems cians care to emphasize. For modern medicine, which
to play a limited role in care giving. Overall, then the is designed primarily to forestall it, death is often seen
countries represented here offer a wide range of con- as failure. Similarly, politicians are not anxious to risk
texts for studying end-of-life decisions. their careers on what are often no-win, highly sensi-
The trends and patterns emerging from these case tive and inflammatory issues with heavy moral dimen-
studies in terms of the wide disparities in attention sions. Despite this reluctance to set end-of-life policy,
and debate given end-of-life issues in these countries a multitude of factors have combined to place at least

cost and end-of-life care • summer 2011 207

S Y MPO SIUM

some of these issues on the political agendas of all the Some authors were better able to provide data on
countries examined here. However, as vividly illus- the proportion of people who die in various medical
trated by the authors of the case studies, the framing and non-medical settings, although in most countries
of the issues varies significantly. Policies and concepts it is based more on conjecture or rough estimates than
that in some countries enjoy widespread support are hard figures. The economic wealth and cultural heri-
taboo elsewhere and not even open for discussion. tage of the country appear to be important determi-
nants of where people die. A key social factor is the
Data on Dying: Costs and Place of Death strength of the extended family structure and the duty
One of the first findings of most of the chapter authors of family members to care for the dying person. In
was that systematic, accurate data on dying in their most of the world and in a majority of our countries,
countries was not available. As a result, many of the most people die at home. In Turkey, for instance, a res-

The analysis here demonstrates that end-of-life policies across nations vary
both in terms of substance and refinement. Although all countries were found
to be addressing some of the issues surrounding end-of-life decisions, the
importance of culture and economics cannot be overestimated when dealing
with the profoundly emotional subject of death.

quantitative questions posed could not be answered. olute duty of children to look after their parents, com-
In some countries, no reliable data exists, even on the bined with limited access to life-support technologies,
number of deaths. In Brazil, for instance, there remains means that the vast majority of terminal patients die
a “cultural silence around death” and few statistics are at home.41 Kenya, too, has a strong extended family
available.36 Turkey has no national statistics on dying support system, a severely under funded and stressed
and no data on the costs of dying. Likewise, India has health care system and very few available life support
no systematic data on the causes and costs of death. systems.42 Therefore, like Turkey, most deaths occur
In Kenya, the context of a “highly paternalistic medi- at home.
cal profession” has worked counter to the collection of In India, another country with a poor medical infra-
national statistics surrounding death.37 Li et al. found structure and a strong notion of family responsibility,
that the only way to study end-of-life policy in China outside of urban areas, most people die at home.43 In
was to focus on one province or city, in part because of urban areas, the middle and upper classes might go
the lack of even crude national data.38 to hospitals or nursing homes, but since there are few
Israel, too, has few statistics and little research on intensive care units, the proportion that die there is
death and dying, and, “no laws and little consensus.”39 insignificant. China, likewise, demonstrates a clear
Even in legalistic Germany there is little empirical distinction between urban and rural areas. Although
data on dying. Of all these countries, only Japan, Tai- reliable estimates again were not available, the norm is
wan, the U.K., and the U.S. systematically collect data for rural residents to die at home and urban residents
on the causes, costs, and numbers of deaths nationally. in hospital.44 Even though dying at home has a special
Moreover, except for Britain and the U.S., it was not cultural meaning both for Chinese patients and their
possible to even estimate the costs of dying, either by families and even though most cancer patients prefer
disease category or in the aggregate. Even in the U.K., to receive terminal care and die at home, in Taiwan,
where substantial records on death are kept, they an increasing number of terminal patients are dying
are fragmented and of questionable reliability when in hospitals, especially in the urban areas where tra-
it comes to estimating the cost of dying.40 This is not ditional culture has been diluted by western values.45
surprising in that the cost of dying is not readily iden- However, even there, 2000 data still show that 58 per-
tifiable in “health” statistics. As noted above, death is cent die at home (80 percent in rural areas, 20 percent
not what traditional medicine is about, even though it in urban) and only 35 percent in hospital.
will be the ultimate result for all patients. Only when we move to western countries, do we
find majorities that die in hospital. Simon estimates

208 journal of law, medicine & ethics

 Robert H. Blank

that about half the deaths in Germany occur in hospi- ordered dosages.51 Moreover, altering the traditional
tals. Although national data on the deaths outside of value that views sending a dying loved one to hospice
hospitals is poor, a 1997 study from Rhineland found as abandonment and a dereliction of filial responsibil-
the following breakdown: 44 percent in hospital; 13 ity is one of the keys to facilitating acceptance of pal-
percent in nursing home; 40 percent at home; and liative care and has led to a recent shift in hospice care
3 percent elsewhere.46 Similarly, despite its strongly from hospital to home in both Taiwan and Japan.52
rooted family tradition, in Japan a majority die in hos- With severely limited health care resources, pallia-
pital, although it must be noted that most “hospitals” tive care is almost non-existent in Turkey. Pain man-
in Japan are not large acute care medical centers, but agement is inadequate, although recently some medi-
smaller long-term facilities along the lines of western cal centers have established dedicated departments.
nursing homes.47 Moreover, a culture that sees it as a duty of children to
Not surprisingly, the U.K. and U.S. have the high- look after their dying parents means most people die
est rates of in-hospital deaths. Relatively weak fam- at home and that hospices do not exist except in a few
ily support structures and the ready availability of nursing home settings.53 Similarly, Kenya exhibits an
life-support facilities have increased this prevalence absence of pain management/palliative care services,
over past decades. While most individuals in the U.S. although a charitable hospice movement has begun.54
express a desire to die at home, most do not. National In India there are a few charitable palliative care cen-
estimates of deaths are: 55 percent in hospital; 25 per- ters, but outside urban areas most people die at home
cent at home; 9 percent in nursing home; 9 percent without palliative resources.55
in hospice; and 1 percent elsewhere. As evidenced by In Germany there is a system of small, independent
the extensive Dartmouth Atlas study, however, there is hospices as well as integrated palliative care centers,
considerable variation across the U.S. Moreover, this but they were relatively late in coming. Home care
study found that the single best indicator of where a offers pain therapy and symptom control but, as noted
person dies is the availability of acute care in a spe- by Simon, since they are not covered by health insur-
cific locale: if acute care is available, it is used.48 Of ance, hospice services are mostly volunteer-based.56
all the countries examined here, the U.K., with its According to ten Have, the relatively primitive state of
national health service, appears to have the highest palliative services in the Netherlands is partly a reflec-
rates of death in a hospital setting. Based on his sta- tion of diminished options due to the heavy emphasis
tistical analysis of hospital records, Ashcroft estimates on euthanasia. However, specialized centers in pain
that 65 percent of deaths occur in hospital, 20 percent control and management have been established in the
at home, 4 percent in hospice, and 8 percent in other last decade and interest in palliative care is on the rise
communal establishments.49 in the Netherlands.57 Although Japan has had dedi-
cated palliative care units since 1980, a cultural reluc-
Palliative Care and Hospices tance to use them means that less than one percent of
Closely linked to the question of where people die deaths overall occur in a hospice, and pain manage-
are the use of palliative care and hospices, where a ment in Japan remains inadequate.58
preponderance of palliative care takes place in some In contrast, other counties have more extensive pal-
countries and virtually none in others. Palliative care liative care facilities and services. Israel has a well-
is quite limited and a relatively recent addition in most established institutional and home care hospice system.
countries, although it appears to be expanding. In The U.K. was the birthplace of the hospice movement
Brazil, for instance, a national association for pallia- although it remains overwhelmingly charitable and,
tive care was first founded in 1997, and there are pres- thus, a low priority for the NHS. The U.S. also has a
ently only 29 palliative care centers spread across the well-established hospice system that emerged for can-
entire population. Part of the reason for the paucity of cer patients in the 1960s and was expanded to AIDS
work in pain management is a cultural view that one patients in the 1980s, although overall their use has
must suffer as part of life.50 In China, too, palliative been relatively low in spite of expanded Medicare
care is a recent activity but dedicated wards have been funding over the past two decades. As elsewhere, pain
added in recent years. Taiwan has a relatively recent management and palliative care continue to be under
(1990) but active hospice movement and has seen a funded in the U.S.59
relatively rapid expansion of inpatient and home-care
programs particularly in the urban areas. Pain man- Advance Directives
agement in Taiwan, however, remains inadequate, in The legal status of advance directives, too, varies widely
part because of a cultural emphasis on Stoicism under across these countries, but even in those countries that
which patients often refuse pain medicine or cut formally allow them, use rates remain low. Indian law

cost and end-of-life care • summer 2011 209

S Y MPO SIUM

does not recognize advance directives of any type. In essary in each case and as a result few people bother
Kenya they are seldom used, and in some African cul- to have one. In Taiwan, the process for obtaining an
tures they are rejected because they are seen as invit- advance directive was formalized by the Natural
ing death. Turkish law allows advance directives, but Death Act of 2000. According to the Act, terminally ill
they are not binding and often ignored. In contrast, patients have the right to make a living will or appoint
DNR orders are illegal in Turkey, but they are prac- a durable power of attorney that can be executed after
ticed. Likewise, advance directives are rare in China, two doctors certify that the patient suffers from a ter-
and in Israel, advance directives have unclear status minal illness. Despite the Act, actual use in Taiwan
and are seldom used. remains very low.60 Moreover, Confucianism regards
Although Japanese statutes allow living wills, they “Hsiao” or filial piety as one of the key values neces-
are rare and less than one percent of patients die with sary to maintaining social stability and family mem-
some form of advance directive. While German law bers who sign DNR might be viewed as abandoning
recognizes advance directives, court approval is nec- the loved one.61 The Netherlands has a special proce-
dure through which a patient can request euthana-
Table 2 sia in advance of becoming incompetent. Although a
Advance Directives variety of advance directives are legal in the U.K., their
use is not widespread. Of all the countries examined
Brazil Limited use here, the U.S. stands alone in terms of attention paid
China No legal basis to advance directives, perhaps due to the emphasis
Germany Court approval in each case required, on individual rights and highly litigant system, but
few have them
even in the U.S. advance directives are utilized in a
India Law does not recognize, not used
very small proportion of deaths, contrary to what one
Israel Unclear status, seldom used
Japan Living wills legal but uncommon use, <1 might believe given all the media attention.
percent
Kenya Rarely used, seen by some African cultures as Euthanasia: Withholding, Withdrawing, or
inviting death Assisting Death
Netherlands Advance requests for euthanasia, seldom used As noted earlier, euthanasia is a multi-faceted and
Taiwan Recent law, low use, two doctors must certify culture laden term (see Table 3). It can range from
terminal case the omission of (withholding or withdrawing) life-
Turkey No legal basis, not binding, little used extending care that might include antibiotics, artifi-
U.K. Legal but low use cial hydration and nutrition, or life-support systems
U.S. Legal but low use
on the one hand, to actions taken to induce death on
the other. Moreover, any of these measures can be
voluntary on the part of the
patient, speculative when
Table 3
the patient is unable to con-
Categories of Euthanasia78
sent, or involuntary. For this
reason, many cultures reject
Passive Active use of the term itself. Thus,
omission of measures to direct inducement of there remains considerable
prolong life death confusion over even the defi-
Voluntary Passive Voluntary – Active Voluntary – nition of euthanasia in many
With patient’s express and Conscious and rational pa- Conscious and rational countries and as a concept it
informed consent tient refuses life-prolonging patient requests and is is considerably less compre-
treatment given lethal injection hensible than some western
Speculative Passive Speculative – Active Speculative – observers assume. Although
Without express and informed Cessation of life-prolonging Lethal injection adminis- assisted suicide remains ille-
consent (i.e., comatose patient, treatment for patient unable tered to patient unable gal in most jurisdictions, tech-
infant, dementia patient) to give informed consent to give informed consent nically even the Netherlands,
Involuntary Passive Involuntary – Active Involuntary –
in many countries there has
Against the express directions Cessation of life-prolonging Lethal injections adminis- been a trend towards accep-
of the patient treatment to rational per- tered to rational patient tance or at least tolerance of
son against her will against his will other forms of euthanasia,
particularly the withholding

210 journal of law, medicine & ethics

 Robert H. Blank

Table 4
ever be acceptable in Israel, although high doses of
Euthanasia
morphine that result in death might be given for pain
Passive Active relief.64
Brazil Unsettled, new concept Illegal In Japan, a medical treatment used to remove or
China No clear standards Illegal reduce pain that might also cause premature death
Germany Yes, voluntary WH-WD Illegal is lawful but only if the patient suffers from incur-
India Against law in any form (LLS) Illegal able disease, the pain is unbearable, and the patient
Israel Varies, no law or rules Illegal consents. Anyone assisting death is liable to be pun-
Japan Yes, WH-WD Illegal* ished under law, but the courts have shown leni-
Kenya Against law (LLS) Illegal** ency, especially for family members who do so.65 A
Netherlands Yes, WH-WD Illegal***
strong conviction of absolute respect for human life
Taiwan Yes, WH-WD Illegal
Turkey Against law (LLS) Illegal
in Brazil has meant that even with a change in the
UK Legal, WH-WD Illegal* code in 1988 to include quality-of-life considerations,
USA Legal, WH-WD Illegal*** there are no national laws that protect withholding
of treatment or DNR orders.66 Despite this, in 1999
* Leniency given, especially for family members Sao Paulo State enacted a law that gives individuals
** AIDS changing this a right to refuse painful or extraordinary attempts to
*** Official Dutch view, but technical only prolong life.
*** Leniency/exception Oregon and Washington As in these other countries, active euthanasia is ille-
gal in China and forbidden in clinical practice. China
WH—withhold has no formal euthanasia law and there are no clear
WD—withdraw
standards or indicators for withdrawing therapy.
LLS—lack of life-support systems in country
Moreover, while there has been some discussion in
government, to date there has been no formal law on
of medical technologies when a competent patient so passive euthanasia. Although active euthanasia also
decides (voluntary category). Again, culture and the remains illegal in Taiwan, some argued for it during
sophistication and availability of medical technologies the six-year debate over the drafting of the Natural
in a country appear to be major influences. Death Act of 2002. The Act did formalize procedures
In Kenya, for example, there are few facilities for for withdrawal of life support systems, although as
life support and euthanasia is illegal. However, there Chiu points out, implementation of the law has not
recently has been a surge in requests for assisted sui- been without difficulty.67
cide because of the AIDS epidemic.62 Similarly, in In Germany, the courts have ruled that there is no
Turkey euthanasia of any form is unlawful. Although obligation to sustain life and that life-support treat-
Turkey is a secular state, its 95 percent Muslim popu- ment can be withheld or withdrawn if the will of the
lation guarantees that the Islamic prohibition against patient is known. Moreover, the prescription of drugs
euthanasia is embedded in criminal law.63 Like Kenya for the purpose of reducing pain is allowed even if it
and Turkey, euthanasia in India is against the law leads to death. Active euthanasia in Germany is pro-
under all circumstances. Moreover, there has been hibited by criminal law, although the status of assisted
little public debate over a right to die. In all three of suicide policy is more complicated. A physician can-
these countries, the lack of available life-sustaining not be punished for assisting in the suicide of a patient
intensive care facilities at the end of life means that by supplying drugs as long as the death does not occur
passive euthanasia as defined in the West is a near in his presence. For Simon this “absurd legal situa-
meaningless concept since there is nothing to with- tion makes assisted suicide a humanly difficult option
draw or withhold. as it forces the person administering euthanasia to
Israel is an interesting case in that there is neither leave the dying person at the end in order to escape
written law nor obligatory unwritten rules regarding prosecution.”68
euthanasia. The result is that end-of-life policy varies In the U.K., voluntary passive euthanasia is widely
from one medical center to the next and often from accepted and practiced. In contrast, as borne out by
one ward to another in the same center. Although highly publicized court cases, active euthanasia in any
it is unclear if a patient has the right to refuse life- form remains a criminal offence. Despite the legal sta-
sustaining treatment, there is increasing openness to tus, however, in practice it is not clear-cut and there
withholding (but not withdrawing) such treatment, have been few prosecutions for assisted suicide.69 In
although it remains a minority opinion. The authors these cases, the verdicts have been especially lenient
note that any form of active euthanasia is unlikely to for family members convicted of killing a loved one.

cost and end-of-life care • summer 2011 211

S Y MPO SIUM

Table 5
universal definition of death. The review
Brain Death
of these countries, however, demonstrates
Brazil Increased acceptance, presumed consent law repealed
that the debate over brain death and its
China No recognition of brain death connections and implications for organ
India Defined by law but virtually all patients wait until cardiovascular death transplantation has been at best muted
Israel General refusal to accept, very low organ transplant rates elsewhere. Of those countries where it has
Japan Unsettled despite much debate over brain death and organ transplantation been an issue, only in the U.K. and U.S. is
Kenya No recognition of brain death, no harvesting of organs for transplantation brain death widely supported and prac-
Turkey No recognition of brain death ticed as the basis for organ transplanta-
U.K. Legal definition but some family refusal to accept tion. In Kenya, there is no recognition of
U.S. Legal definition but some family refusal to accept brain death and organs cannot be trans-
planted.73 Similarly, in Israel there is a
As usual, there has been considerable variation across general refusal to accept the concept of brain death
the U.S. states. However, a series of high profile court and, thus, a very low rate of organ transplantation.74
rulings and an active right-to-die movement has Although death is defined as brain death by law in
resulted in the legalization of voluntary passive eutha- India, most families refuse to accept it and choose to
nasia through the withholding or withdrawal of life- wait for cardiovascular death to occur so it is very rarely
sustaining technologies.70 Physician-assisted suicide is practiced. However, there is strong support for organ
illegal in all but two of the 50 states, but like the U.K. removal after cardiovascular death since under the
in practice prosecution has been limited in most states Hindu/Buddhist traditions the body means nothing
jurisdictions and there is little evidence of a national at death. In Japan there has been a heated debate over
policy initiative. In 2008, Washington State became brain death and organ transplantation, and although
the second state to legalize physician-assisted suicide the laws are slowly changing, there remains little pub-
following Oregon, which operates under very strict lic acceptance of brain death and very few transplants
controls, with an annual number of assisted deaths are performed.75 Brazil, on the other hand, has seen
reported less than 50.71 increased acceptance of brain death and a transplant
Much attention has been centered on the euthana- number second only to the U.S., even though a law
sia policy of the Netherlands, but it remains contro- to require presumed consent designed to increase
versial and is still not an established, normal prac- organ donation rates was repealed after strong public
tice.72 Although the Termination of Life on Request opposition.76
and Assisted Suicide Act does legalize such actions
performed by a physician, the Dutch government Policy Arenas and the Question
insists that the law does not legalize active euthanasia, of Convergence
but merely provides a punishment exclusion assuring In addition to major differences in many substantive
that physicians will not be prosecuted. So even in what areas surrounding the end of life, the analyses here
some international observers see as an unambigu- demonstrate considerable variation in the role of gov-
ous case of active euthanasia, the situation remains ernments in end-of-life decisions. There is also wide
unsettled. divergence among these countries over the stage of
Overall, these countries present a wide range of debate on specific death issues as well as where this
responses to the broad issue of euthanasia. As many debate takes place: among government policymakers,
of the authors point out, this is an area where there the medical profession, commissions or committees,
is substantial inconsistency between the formal law academics, or a public forum. Moreover, while a few
and actual practice, particularly as related to the with- governments like the Netherlands and Taiwan have
holding and withdrawal of treatment and the use of passed specific legislation, in most others end-of-life
pain-killing drugs to relieve suffering. Even in those decisions have largely been left to the medical profes-
countries with strong cultural objections to eutha- sion or, as in the U.K. and U.S., handled through court
nasia and with Stoic traditions, there are indications decisions on a case-by-case approach. In a few coun-
that clinical practice, particularly related to the use of tries, ethics committees are active in the decision pro-
drugs to relieve suffering, often does not correspond cess, but overall the western emphasis on such mecha-
with either law or culture. nisms has seen limited applicability elsewhere.77
Although economic pressures and the motivation
Definition of Death to reduce pain and suffering appear to be breaking
For American observers, brain death as a concept is down some past restrictions, particularly as related
widely accepted and frequently assumed to be the to pain management and the withholding or with-

212 journal of law, medicine & ethics

 Robert H. Blank

6. International Bioethics Committee (IBC), Report of the IBC on

drawing of life-support systems, overall convergence the Possibility of Elaborating a Universal Instrument on Bio-
in end-of-life policy appears very limited. Even in ethics, Paris, 2003.
those areas that western observers might see as more 7. C. J. Bennett, “What Is Policy Convergence and What Causes
It?” British Journal of Political Science 21, no. 2 (1991): 215-
straightforward, such as encouraging hospice/pallia- 233.
tive care, brain death, and advance directives, there is 8. D. Chernichovsky, “Health System Reforms in Industrialized
little evidence of convergence across these countries. Democracies: An Emerging Paradigm,” Milbank Quarterly 73,
no.3 (1995): 339-356; M. G. Field, “Comparative Health Sys-
On euthanasia, especially, there is unlikely to ever tems and the Convergence Hypothesis: The Dialectics of Uni-
be convergence. Death-related issues are too intense versalism and Particularism,” in F. D. Powell and A. F. Wessen,
and culturally sensitive to expect a convergence to the eds., Health Care Systems in Transition: An International Per-
spective (Thousand Oaks, CA: Sage, 1999).
western, largely U.S. driven, norms despite the dif- 9. S. Harrison, M. Moran, and B. Wood, “Policy Emergence
ficult resource allocation questions surrounding the and Policy Convergence: The Case of ‘Scientific-Bureaucratic
end-of-life and aging populations that cross national Medicine’ in the United States and United Kingdom,” British
Journal of Politics and International Relations 4, no. 1 (2002):
boundaries. 1-24.
Even more so than in other areas of medicine, issues 10. C. Pollitt, “Clarifying Convergence: Striking Similarities and
at the end of life elucidate the importance of religion Durable Differences in Public Management Reform,” Public
Management Review 4, no. 1 (2002): 471-492.
and culture, as well as the role the family and social 11. R. H. Blank and V. Burau, Comparative Health Policy, 3rd ed.
structure. In most countries examined here, even the (Basingstoke: Palgrave, 2010).
western ones, there is still fervent opposition to change 12. D. Macer, ed., Eubios Journal of Asian and International
Bioethics, published by Eubios Ethics Institute, Christchurch,
on these issues among sizeable segments of the popu- New Zealand.
lation and the health care professions. The accounts 13. C. L. Cox, E. Cole, T. Reynolds, and M. Wandrag et al., “Impli-
of these 12 countries demonstrate how controversial cations of Cultural Diversity in Do Not Attempt Resuscita-
tion (DNAR) Decisions,” Journal of Multicultural Nursing &
these issues are. In many countries, there remains Health 12, no. 1 (2006): 20-28.
the feeling that death is a highly personal matter, not 14. C. Justice, “The Natural Death While Not Eating: A Type of
something to be publicly discussed, much less made a Palliative Care in Banaras, India,” Journal of Palliative Care 11,
no. 1 (1995): 38-42.
matter of public policy. As discussed here, however, in 15. S. Chattopadhyay and A. Simon, “East Meets West: Cross-Cul-
all countries the ethical issues are beginning to be dis- tural Perspective in End-of-Life Decision Making from Indian
cussed and are finding their way to the public policy and German Viewpoints,” Medicine, Health Care and Philoso-
phy 11 (2008): 165-174, at 165.
agenda and, as such, will increasingly become con- 16. Id.
tentious and unremitting political issues for the 21st 17. M. Croasdale, “Study Examines Death across Cultures,” Ameri-
century. can Medical News 48, no. 31 (2005): 13.
18. See Schicktanz et al., supra note 2.
19. P. S. Matthijs, V. Wijmen, M. L. Rurup, H. Roeline, W. Pas-
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