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Current Research Findings on End-of-Life Decision Making Among Racially or Ethnically Diverse Groups

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Current Research Findings on End-of-Life Decision Making Among Racially or Ethnically Diverse Groups

Abstract

We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research. We identified 33 empirical studies in which race or ethnicity was investigated as either a variable predicting treatment preferences or choices, where racial or ethnic groups were compared in their end-of-life decisions, or where the end-of-life decision making of a single minority group was studied in depth. We conducted a narrative review and identified four topical domains of study: advance directives; life support; disclosure and communication of diagnosis, prognosis, and preferences; and designation of primary decision makers. Non-White racial or ethnic groups generally lacked knowledge of advance directives and were less likely than Whites to support advance directives. African Americans were consistently found to prefer the use of life support; Asians and Hispanics were more likely to prefer family-centered decision making than other racial or ethnic groups. Variations within groups existed and were related to cultural values, demographic characteristics, level of acculturation, and knowledge of end-of-life treatment options. Common methodological limitations of these studies were lack of theoretical framework, use of cross-sectional designs, convenience samples, and self-developed measurement scales. Although the studies are limited by methodological concerns, identified differences in end-of-life decision-making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. Future research priorities are described to better inform clinicians and policy makers about ways to allow for more culturally sensitive approaches to end-of-life care.
The Gerontologist Copyright 2005 by The Gerontological Society of America
Vol. 45, No. 5, 634–641
Current Research Findings on End-of-Life
Decision Making Among Racially or
Ethnically Diverse Groups
Jung Kwak, MSW,
1
and William E. Haley, PhD
1
Purpose: We reviewed the research literature on
racial or ethnic diversity and end-of-life decision
making in order to identify key findings and provide
recommendations for future research. Design and
Methods: We identified 33 empirical studies in which
race or ethnicity was investigated as either a variable
predicting treatment preferences or choices, where
racial or ethnic groups were compared in their end-of-
life decisions, or where the end-of-life decision making
of a single minority group was studied in depth. We
conducted a narrative review and identified four
topical domains of study: advance directives; life
support; disclosure and communication of diagnosis,
prognosis, and preferences; and designation of
primary decision makers. Results: Non-White racial
or ethnic groups generally lacked knowledge of
advance directives and were less likely than Whites
to support advance directives. African Americans
were consistently found to prefer the use of life
support; Asians and Hispanics were more likely to
prefer family-centered decision making than other
racial or ethnic groups. Variations within groups
existed and were related to cultural values, de-
mographic characteristics, level of acculturation, and
knowledge of end-of-life treatment options. Common
methodological limitations of these studies were lack
of theoretical framework, use of cross-sectional
designs, convenience samples, and self-developed
measurement scales. Implications: Although the stud-
ies are limited by methodological concerns, identified
differences in end-of-life decision-making preference
and practice suggest that clinical care and policy
should recognize the variety of values and prefer-
ences found among diverse racial or ethnic groups.
Future research priorities are described to better
inform clinicians and policy makers about ways to
allow for more culturally sensitive approaches to end-
of-life care.
Key Words: End of life, Decision making,
Diversity, Family caregiving
The United States is a nation increasingly com-
posed of people with diverse racial or ethnic and
cultural backgrounds. The rapid increase in the
number and proportion of minority elders (U.S.
Census Bureau, 2002) suggests the importance of
recognizing and understanding the role of race or
ethnicity and culture on end-of-life decision making.
Individuals from racial or ethnic minority back-
grounds may be especially likely to turn to their
traditional norms and practices at the end of life
because religious and cultural beliefs and norms can
provide them with meaning for their illnesses and
guide them in making decisions regarding treatment
and care options (Ersek, Kawaga-Singer, Barnes,
Blackhall, & Koenig, 1998).
A better understanding of diversity and end-of-life
decisions is particularly important because there is
increasing pressure to pay attention to procedure and
documentation of end-of-life choices since the
enactment of the Patient Self-Determination Act in
1990 (Braun, Pietsch, & Blanchette, 2000). Most
reviewers emphasize that cultural diversity has pro-
found effects on end-of-life decision-making pro-
cesses (Krakauer, Crenner, & Fox, 2002), and yet
clinicians and policy makers have a limited evidence
base to guide the development of culturally sensitive
approaches. Although research on diversity and end-
of-life issues has been reviewed to provide sugges-
tions for clinical practice (e.g., Krakauer et al.), we
are aware of no previous reviews that critically and
comprehensively examine research findings on end-
of-life decisions among racially or ethnically diverse
groups. Our purpose in this article is to provide
a critical review of what is known about diversity and
end-of-life decision-making research, to identify the
Address correspondence to Jung Kwak, School of Aging Studies,
University of South Florida, 4202 E. Fowler Avenue, MHC 1305, Tampa,
FL 33620. E-mail: jkwak@cas.usf.edu
1
School of Aging Studies, University of South Florida, Tampa.
634 The Gerontologist
gaps in this literature, and to provide recommenda-
tions for future research, practice, and policy.
We used a narrative approach in this review as it
allows for the use of a range of articles that have used
different methodologies to study the same problem
(Dilworth-Anderson, Williams, & Gibson, 2002).
The inclusion criteria for articles for this review
included studies that (a) examined whether race or
ethnicity was a predictor of treatment preferences
or choices; (b) compared results on decisions or
preferences on end-of-life care options across racial
or ethnic groups; or (c) provided descriptive in-
formation on single minority groups, provided that
the focus of the study was on end-of-life-related
issues with particular emphasis on race or ethnicity
or culture. In addition, the articles reviewed here
were limited to studies using American and Canadian
samples and found in journals printed in English
from 1992 to 2003. We used the following databases
to identify articles that met our inclusion criteria:
Educational Resources Information Center (known
as ERIC), Infotrac, Medline, and PsycINFO. The
search terms we used for this review include end-of-
life, decision making, life support, advance direc-
tives, advance care planning, communication,
caregiving, diversity, ethnicity, race, minority,
culture, elderly, aged, and family. As a result, we
identified a total of 33 empirical studies for inclusion.
Detailed tables describing the sampling, data-collec-
tion method, outcome variables, and summary of
findings of each study are available on request.
We identified four topical domains through an
analysis of all studies, focusing on factors that were
the most common among selected studies. Among the
33 articles we reviewed, 17 studies addressed multiple
domains. The first domain, advance care planning, is
broadly defined as providing directions in advance of
incapacitation to guide medical decisions. An ad-
vance directive is a witnessed written document or
oral statement that is used to provide such directions
on health care, and its major types include living wills
and durable power of attorney for health care
(DPOA-HC; Braun et al., 2000). Life support, the
second domain, included research focused on life-
prolonging measures or aggressive treatment to
prolong life indefinitely by use of artificial devices
or methods. The third domain was preferences for
the involvement of patients, physicians, and family in
communications about the disclosure of diagnosis
and prognosis of terminal illness. The last domain
addressed who makes decisions, with an emphasis on
the role of the family in end-of-life decision making.
Review of Current Literature
Design and Methods
Of the 33 studies that we reviewed, 22 studies used
a nonprobability, convenience sampling design. The
participants of these studies were recruited from
community and senior centers, managed care set-
tings, nursing homes, Alzheimer’s disease clinics, and
outpatient and inpatient medical settings. The 11
studies using probability samples varied from na-
tional to statewide sampling, and they focused on
populations including nursing home residents, hos-
pitalized Medicare beneficiaries, community-dwelling
older adults, and family members of deceased elders.
This wide diversity in sampling approaches compli-
cates efforts to compare findings across studies. The
studied racial or ethnic groups included older adults
designated as African American, Asian, American
Indians, Chinese, Filipino, Hawaiian, Hispanic,
Iranian, Japanese, Jewish, Korean, and Mexican
American.
Twenty-four studies used quantitative methods,
five studies used qualitative methods, and four
studies used both quantitative and qualitative meth-
ods. Although some studies derived questions on
certain outcome variables from previously used
scales, researchers who examined attitudes toward
and preferences for the use of advance directives and
life support, communication and disclosure of ill-
nesses, and the question of who makes decisions
typically adapted the existing scales to develop their
own measures.
Because of the variability in research methods and
the small number of studies focused on some groups,
findings about specific racial or ethnic groups in these
studies should be viewed with caution. Results might
not be applicable to members of these groups with
different demographic characteristics, and many find-
ings required replication. In addition, because some
studies used very general racial or ethnic categories
(e.g., Asians), whereas others examined more specific
groups (e.g., Korean Americans), findings vary in the
degree to which they are informative about specific
cultural factors affecting decision making.
Findings
Advance Care Planning
Possession.—There were 12 studies that examined
the possession of advance directives among different
racial or ethnic groups. Two studies (Caralis, Davis,
Wright, & Marcial, 1993; Morrison, Zayas, Mulvi-
hill, Baskin, & Meier, 1998) found no difference
between three racial or ethnic groups including
African American patients whereas 9 other studies
found that African Americans were less likely to
complete advance directives in the form of a living
will or DPOA-HC than White respondents (Degen-
holtz, Arnold, Meisel, & Lave, 2002; Eleazer et al.,
1996; Hopp, 2000; Hopp & Duffy, 2000; Kiely,
Mitchell, Marlow, Murphy, & Morris, 2001; Mc-
Kinley, Garrett, Evans, & Danis, 1996; Mebane,
Oman, Kroonen, & Goldstein, 1999; Murphy et al.,
1996; Phipps et al., 2003). This finding was consistent
Vol. 45, No. 5, 2005 635
across community-dwelling older adults, nursing
home residents, cancer patients, and physicians.
Findings on other racial or ethnic groups such as
Hispanic, Asian, and Native American groups varied
across studies. Hispanics were found to have a lower
possession of advance directives than Whites in four
studies (Eleazer et al., 1996; Kiely et al., 2001;
Morrison et al., 1998; Murphy et al., 1996); two
other studies found no such differences (Caralis
et al., 1993; Degenholtz et al., 2002).
Only four studies examined the presence of ad-
vance directives in various forms (such as a living will
or health care proxy) and included Asians in their
samples. Findings on Asian older adults on the rate of
execution of advance directives differed depending
on sample characteristics. Kiely and associates (2001)
found that Asian nursing home residents from four
states were less likely to complete a living will than
Whites and Native Americans, but they were as likely
as Whites and more likely than Native Americans,
Hispanics, and African Americans to have designated
a surrogate decision maker. However, Eleazer and
colleagues (1996) found that, among the community-
dwelling frail older adults participating in the
different regional Program for All-Inclusive Care of
the Elderly (PACE) program sites, Asian frail older
adults were more likely to have recorded health care
wishes than three other groups (African American,
Hispanic, and White) and health care proxy was the
most common form of advance directives for Asians.
Although Kiely and Eleazer did not identify specific
racial or ethnic subgroups within the Asian popula-
tion, Braun, Onaka, and Horiuchi (2001) found
among Hawaiian residents that Japanese Americans
and Chinese Americans were more likely to have
completed advance directives than individuals with
Filipino or Hawaiian ancestry. Murphy and col-
leagues (1996) found that no Korean American
older adults possessed advance directives at the
time of interview.
In summary, research on actual completion or
possession of advance directives across different
racial or ethnic groups provides consistent evidence
that Whites are more likely to have some form of
advance directives than African Americans. Frail
older adults from Hispanic, Asian, or Native
American racial or ethnic backgrounds in the
community or long-term-care setting are also gener-
ally found to have lower rates, except when they are
enrolled in special services that may reduce such
discrepancies; however, the number of studies
examining this issue is small.
Knowledge.—Of five studies in this area, four
found that Whites were more knowledgeable about
advance directives than other racial or ethnic groups.
Murphy and colleagues (1996) reported that White
and Mexican American older adults were more
knowledgeable about advance directives than African
American and Korean American older adults. Caralis
and associates (1993) and Morrison and colleagues
(1998) found that White patients were more likely to
know what an advance directive was than African
Americans and Hispanics. McKinley and colleagues
(1996) conducted a qualitative analysis of cancer
patients who did not complete a living will. They
found that a higher proportion of African Americans
reported a lack of knowledge about living wills as
a reason for not completing a living will than White
patients. However, Perkins, Geppert, Gonzales,
Cortez, and Hazuda (2002) found through their
in-depth interviews with African American, Mexi-
can American, and White adult patients that miscon-
ceptions about advance directives were found in all
three groups.
Although there are few studies in this domain,
there are consistent findings that suggest that White
adult and older patients are more knowledge-
able about advance directives than other racial or
ethnic groups.
Attitudes.—Seven studies explored attitudes held
by racial or ethnic groups toward advance directives
or advance care planning, and African Americans
were the most commonly studied group. Two studies
(Mebane et al., 1999; Waters, 2001) found negative
attitudes toward advance directives among African
Americans compared with Whites, whereas two
other studies did not (Murphy et al., 1996; Perkins
et al., 2002). Mebane and colleagues found that,
among physicians, older African American physi-
cians were less likely to support advance directives
than younger African American physicians or White
physicians of any age. Similarly, Waters found that
African American participants in focus groups held
negative attitudes toward advance directives because
they felt that advance directives would not be
followed by health care professionals and because
they distrusted the health care system. Although
study participants of two other studies (Murphy et al;
Perkins et al.) reported positive general attitudes
toward advance care planning, participants still
generally chose not to use advance directives because
they had issues of distrust concerning the current
medical system. Other authors suggest that this low
level of trust in African Americans is due to personal
experience with poor access to medical care and
awareness of abuses in medical research in the past,
such as the Tuskegee syphilis study (Berger, 1998).
Contrary to this notion of distrust of the medical
system among African Americans, however, Mc-
Kinley and colleagues (1996) found that the majority
of African American cancer patients trusted the
medical system and believed that living wills would
help them keep control over their terminal care. In
this study, lack of trust or fear of inappropriate
medical treatments was not related to the treatment
preferences of both White and African American
636 The Gerontologist
cancer patients after sociodemographic variables
were controlled for. As the authors noted, it is
possible that, in this study, participants felt pressure
to provide socially desirable answers and that the
instrument might not have identified subjective
perception of patients such as trust precisely because
its validity was not demonstrated.
Other groups have been less widely studied.
Bowman and Singer (2001) reported that Chinese
older adults in Canada with Confucianist, Buddhist,
and Taoist traditions viewed overt reference to death
as taboo because it was considered to bring bad luck.
They also reported that participants believed that
many major life events such as death were un-
predictable, and hence present perspectives would
not be useful in the future and advance planning for
end-of-life-related events was unrealistic. Carrese
and Rhodes (1995) found that advance directives
were rejected by Native Americans in the Navajo
Indian reservation because advance-care planning
would be considered as violating their cultural values
of avoidance of negative thinking and speaking.
Matsumura and colleagues (2002) found that, among
Japanese and Japanese Americans, higher accultur-
ation was associated with more positive attitudes
regarding advance-care planning. Murphy and col-
leagues (1996) found that Korean American and
Mexican older adults were more likely to have
negative attitudes toward advance-care planning
than White or African American older adults.
Perkins and others (2002), however, found that
Mexican American patients believed that advance
directives could help health care providers know or
implement the patient’s wishes regarding end-of-life
treatments.
In summary, studies show that African Americans
are more likely to have negative attitudes toward
advance directives than Whites. Results generally
suggest that African Americans are less likely to
endorse the use of formal advance directives because
of their personal experience with access to care and
their distrust of the health care system. For other
racial or ethnic groups, there are few studies, but
they suggest that there are culture-specific attitudes
that make the concept of advance directives prob-
lematic or unappealing and that these reservations
are greatest among less acculturated adults.
Life Support
Actual use.—Among nursing home residents with
severely impaired cognitive status in Kansas, African
American residents were more likely to use feeding
tubes than White residents after demographic and
clinical characteristics were controlled for (Gessert,
Curry, & Robinson, 2001). Moreover, Hopp and
Duffy (2000), after controlling for confounders,
found from interviewing relatives of older adults
who died after the first wave of the Asset and Health
Dynamics Among the Oldest Old (AHEAD) study
that African Americans were more likely to have
made end-of-life treatment decisions to use all care
possible to prolong life than Whites. These findings
suggest that, in actual clinical situations, older
African Americans are more likely to choose life-
sustaining measures than White counterparts. Owen,
Goode, and Haley (2001) interviewed bereaved
caregivers of White and African American dementia
patients, and they found no differences in whether
life support had actually been withheld at the end of
life, although caregivers of African American de-
mentia patients were less likely to have agreed prior
to the death of the family member to withhold
treatments than White caregivers. For other racial or
ethnic groups, no studies we reviewed examined the
actual use of life support.
Documented Preference on the Use of Life Sup-
port.—A total of seven studies examined the actual
code status or documented preferences on the use of
life support. Four studies examined the code status of
nursing home residents, and three studies examined
the code status of frail elderly, hospitalized Medicare
beneficiaries, and seriously ill patients. Four studies
on nursing home residents (Degenholtz et al., 2002;
Kellogg & Ramos, 1995; Kiely et al., 2001) and
hospitalized older adults (Wenger et al., 1995) found
that African Americans were less likely to have Do
Not Resuscitate (DNR) orders than Whites.
Hispanic residents were found to fall between
White and African American groups in terms of their
documented preference for life support (Degenholtz
et al., 2002; Kiely et al., 2001). Degenholtz and
colleagues found that Hispanic residents were three
times less likely to have a DNR order than White
residents, whereas Kiely and associates found that
American Indian–Alaskan Native residents had the
higher rates of DNR orders than African American,
Hispanic, and Asian residents. Eleazer and col-
leagues (1996) found that Hispanics were five times
less likely than Whites to have no code (i.e.,
documented desire to use no or limited life-support
measures) and five times less likely than African
Americans to have full code (i.e., documented desire
to use all life support measures).
Concerning frail older adults participating in the
PACE program, Eleazer and associates (1996) found
that Asians were the most likely compared with
African American, Hispanic, and White participants
to choose no code, defined as direction given not to
use basic life support and advanced cardiac life
support. Concerning Asian nursing home residents,
Vaughn, Kiyasu, & McCormick (2000) found
variation within Asian nursing home residents.
Japanese American residents were more likely to
have no code whereas Chinese American residents
were more likely to have full code compared with
residents from other Asian subgroups. However, no
cultural explanations were offered for this difference.
Vol. 45, No. 5, 2005 637
Though limited by a small number of studies that
examined this topic across studies, older African
American adults in both nursing home and commu-
nity settings are generally found to prefer to use life
support at the end of life. Hispanic older adults also
showed a strong preference for life support, but for
other groups there are too few studies to identify
a general pattern, and certain service programs may
affect these outcomes.
Preferences Expressed by Survey or Interview.—
Fifteen studies examined the preference for use of life
support for oneself or others (usually family mem-
bers) in hypothetical situations. Twelve studies using
diverse settings found that African Americans were
more likely to prefer aggressive treatments than
Whites (Allen-Burge & Haley, 1997; Blackhall et al.,
1999; Caralis et al., 1993; Cicirelli, 1997; Garrett,
Harris, Norburn, Patrick, & Danis, 1993; Klessig,
1992; McKinley et al., 1996; Mebane et al., 1999;
O’Brien et al., 1995; Phillips et al., 2000; Phipps et al.,
2003; Waters, 2001). This was consistent across
residents in the community or nursing homes, adult
patients who were interviewed in medical clinic
settings, adult patients with advanced cancer, and in
surrogate decision makers. Blackhall and colleagues
found through their ethnography study that African
Americans suspected that medical treatment deci-
sions were being made based on economic motives,
and thus they held distrust toward health care
providers. Waters found similar results, that is,
mistrust and negative experiences with the health
care systems as reasons for preference for life support
among African American participants. However, as
noted in findings on advance directives, McKinley
and colleagues found no significant differences on the
level of trust of the medical system between White
and African American cancer patients.
Blackhall and colleagues (1999) found that Mex-
ican Americans were more likely than Whites and
African Americans to have positive general attitudes
toward life support. Mexican Americans were more
likely than White respondents but less likely than
African Americans to want life support personally.
Similar results were found by two other studies in
which Hispanic respondents expressed preferences
for life support for themselves that was between
African American (who were most likely to support)
and White respondents (who were least likely to
support; see Caralis et al., 1993 and Klessig, 1992).
Asians were found with a wide range of preference
for life support, and in some cases a discrepancy was
found between general attitudes and preferences for
their own care. Blackhall and colleagues (1999)
examined general attitudes toward and personal
desires for life support among older adults of four
racial or ethnic groups and found that Korean
Americans had the most positive general attitude
toward life support and low desire to use life support
personally, whereas African Americans were most
likely to personally desire life support. Klessig (1992)
found that, although more than 70% of the
Caucasian and Jewish patients had agreed with
stopping life support for themselves in terminal
situations, fewer than 20% of Filipino patients and
20% to 40% of Korean patients agreed with the
same statement. Bowman and Singer (2001) reported
that all Chinese older adults in their study did not
want life support personally. Chinese older adults
reported that older adults with terminal illness were
considered hopeless and use of life support or
prolonging life indefinitely would bring burden and
suffering on the individual, family, and society.
Matsumura and associates (2002) surveyed English-
speaking Japanese Americans, Japanese-speaking
Japanese Americans, and Japanese living in Japan
regarding preference for life support. They found
that English-speaking Japanese had a more positive
attitude toward forgoing life support than the other
two groups. Among physicians, Japanese physicians
in Japan were more likely to support aggressive life-
support treatment for patients who were not in-
formed of the diagnosis than Japanese American
physicians in the United States (Asai, Fukuhara, &
Lo, 1995). Thus, for the Japanese group, accultur-
ation appears to be an important determinant of
attitudes about life support.
In summary, the majority of studies report
a stronger preference for use of life support among
African American older adults than among any other
racial or ethnic groups shown by actual use,
documented preferences, and preferences elicited by
research questions.
Disclosure and Communication of Diagnosis,
Prognosis, and Preferences
Five studies examined preferences for the disclo-
sure of diagnosis and prognosis of illness. Blackhall
and colleagues (1995) and Blackhall, Frank, Murphy,
and Michel (2001) found that Korean and Mexican
American groups of older adults were less likely than
White or African American groups to believe that
a patient with a terminal illness should be told of his
or her diagnosis. Additionally, within the Mexican
American group, there was a positive association
between acculturation and positive attitude toward
truth telling although there was no relationship
between who should make the decision and the level
of acculturation. Carrese and Rhodes (1995) also
found that, among Navajos, disclosure of terminal
illness is perceived as negative, which is discouraged
as a form of negative thinking in Navajo culture. Asai
and colleagues (1995) found that the majority of
Japanese physicians (77%) believed that the physi-
cian should communicate with the patient’s family
about life-sustaining treatment before discussing it
with the patient, whereas only 32% of Japanese
638 The Gerontologist
American physicians believed so. Similarly, Matsu-
mura and colleagues (2002) found that the more
acculturated Japanese (i.e., English-speaking Japa-
nese) were more likely to support the disclosure of
bad news such as diagnosis and prognosis of terminal
illness than less acculturated Japanese, Japanese-
speaking Japanese, and Japanese living in Japan.
One study found that African American, Hispan-
ic, and White adult patient respondents did not differ
in their desire to discuss end-of-life-care options with
physicians, and the majority of participants from all
three groups wanted discussion regarding end-of-life
care and treatment with their physicians and wanted
such discussion to take place during routine clinic
visits (Caralis et al., 1993). However, Morrison and
colleagues (1998) found that White and African
American patients expressed more comfort in
discussing end-of-life issues with their physicians
than did Hispanic patients.
Two studies based on the samples from the
AHEAD study examined informal end-of-life-care
communication among older adults and their family
members. Hopp (2000) found that, in the overall
older adult sample of individuals, there was no
difference between Whites and African Americans.
Hopp and Duffy (2000) examined proxy reports
about deceased older adults and found that African
American decedents were less likely than White
decedents to have had an informal communication
about preferences regarding health care with their
family members. Thus, racial or ethnic differences in
end-of-life communication may be associated with
the individual’s proximity to the death.
Findings on each racial or ethnic group have to be
understood with caution because of the methodo-
logical differences between studies and the small
number of studies. Nevertheless, some cultural
differences clearly exist in terms of preferences about
disclosure of terminal illness among certain racial or
ethnic groups. Among Japanese Americans, Korean
Americans, Mexican Americans, and Native Amer-
icans, disclosure of prognosis and diagnosis was
found to be discouraged, although acculturation may
decrease this effect.
Designation of a Primary Decision Maker:
The Role of Family
Mexican American older adults were more often
found to prefer having family members making
decisions regarding end-of-life treatments compared
with White or African Americans (Blackhall et al.,
1995). Morrison and colleagues (1998) also found
that Hispanic older adults were less likely than
Whites or African Americans to believe that
a formally designated health care proxy was needed
when family was involved in the medical setting.
Morrison and colleagues proposed that, in Hispanic
culture, in which social and family values are strong,
designating a health care proxy was considered
irrelevant because of the risk that family members
other than the designated health care surrogate could
be removed from the decision-making process.
Blackhall and colleagues (1995) found that Korean
and Mexican American older adults were more likely
to believe that family, specifically adult children,
should make decisions regarding end-of-life treat-
ments in the event that they become incompetent or
terminally ill compared with White or African
American groups. These researchers reported that
Korean American older adults believed that end-of-
life decision making is the family’s responsibility and
that filial piety and family-centered decision-making
patterns of traditional Korean culture were un-
derlying factors for such involvement of family.
Bowman and Singer (2001) found similar results
among Chinese older adults. Matsumura and
colleagues (2002) found that the majority of older
adults from three groups, English-speaking Japanese
Americans, Japanese-speaking Japanese Americans,
and Japanese living in Japan, preferred group
surrogate decision making regarding end-of-life
treatments in the event that they could not make
decisions themselves to choosing a single individual
to make the decision on their behalf. Hornung and
colleagues (1998) found that, among frail, community-
dwelling older adults in the PACE program, African
American and Hispanic patients were most likely to
have a daughter as an alternative decision maker,
Asians were more likely to have a son, and White
patients were most likely to have a spouse as an
alternative decision maker. Perkins and colleagues
(2002) also found that the majority of patients from
all three groups preferred a particular family
member as a proxy. Finally, Waters (2001) found
that African American participants in focus groups
preferred trusted family members or friends over
themselves to make end-of-life care decisions.
The importance of involvement of family members
in the decision-making process was found across all
racial or ethnic groups, although preferences for how
family members were involved in the process differed.
For most Asian and Hispanic Americans, the family’s
role is meant to remove the burden of making
treatment decisions from the patient. In general,
African Americans acknowledged that family can
have an influence on end-of-life-care decision making
and trusted family to promote the patient’s wishes, but
it is unclear whether this is distinct from other groups.
Implications for Research, Practice, and Policy
The research reviewed herein has made important
contributions toward the development of a better
knowledge base about diversity issues and end-of-life
decision making. Although the small number of stud-
ies conducted and the methodological concerns evi-
dent in the research preclude making many definitive
conclusions about how different racial or ethnic
Vol. 45, No. 5, 2005 639
groups approach end-of-life decisions, the results to
date suggest that the end of life is a distinct context
that merits special study in research on diversity and
aging, and in which both quantitative and qualitative
methods have made promising initial advances.
The fact that so few studies to date in this area
have utilized representative samples, standardized
and psychometrically sound measures, and included
fine-grained distinctions about ethnic background is
not surprising, given that the broader field of end-of-
life research is in its relative infancy and requires
greater research sophistication (George, 2002). An
interesting comparison is with the literature on
family caregiving, in which attention to the effects
of race, ethnicity, and culture initially received
relatively little attention but became increasingly
common and sophisticated (Dilworth-Anderson et al.,
2002). In our review, we found that 15 of the 33
studies identified had been published during the past
4 years, suggesting a surge of interest in this area.
Another reason the findings to date are encour-
aging is that they suggest powerful effects that are
significant for clinical practice and public policy
concerning diversity and the end of life. Our review
identified consistent evidence that African Americans
have a special aversion to efforts to limit end-of-life
care. Research also has identified distinctive cultural
values among certain Native American and Asian
groups, demonstrating that a one-size-fits-all ap-
proach to improving end-of-life care cannot be
successful with a culturally diverse older population.
Clearly this field could benefit from a number of
improvements in research. Most of these are factors
that have been identified in previous reviews of
research on end of life (George, 2002), and diversity
and family caregiving (Dilworth-Anderson et al.,
2002). These include greater emphasis on identifying
cultural factors that provide explanatory mechanisms
for racial or ethnic differences; multivariate analyses
that consider factors such as socioeconomic status;
and increased linkage of research with theory. End-
of-life decisions can be understood from perspectives
as varied as cognitive psychology, health services
research, and sociocultural theories that emphasize
values and beliefs of diverse cultural groups.
Although it is important to gain knowledge about
differences between racial or ethnically diverse
groups, we also need to examine how individuals
may be different or similar within a single racial or
ethnic group. Many studies did not examine the in-
fluence of such potentially important variables as the
level of acculturation, personal as well as cultural
values, and differences in knowledge regarding types
and utility of end-of-life treatments. Within-group dif-
ferences among diverse groups are influenced by social
factors such as religion, education, location (e.g., rural
vs urban), and gender, and the level of acculturation
and adjustment to the mainstream U.S. culture for the
immigrant groups, such as the length of residence
and the level of English proficiency (Barker, 1992).
Research in this area also has paid insufficient
attention to culture. In most of the studies we
reviewed, cultural influence was inferred and mea-
sured through racial or ethnic group membership,
which is, at best, a proxy for culture (Dilworth-
Anderson, et al., 2002). Therefore, it is important to
examine what specific and more precisely measured
aspects of culture influence end-of-life decision
making. Greater precision can be gained by recog-
nizing that conceptual and operational distinctions
should be made between values, attitudes, and
behaviors of culturally diverse groups in end-of-life
decision making. We need more prospective studies
that examine the relationship between attitudes and
preferences, and actual choices made regarding end-
of-life issues.
Current policy and practice on end-of-life decision
making emphasize rational, individual, and legally
documented choices. Such approaches are based on
decision-making models that were developed from
economic theories with an assumption that individ-
uals as primary decision makers make choices based
on rational, sequential assessments (Hicks & Lam,
1999). Hicks and Lam have argued that assumptions
of an autonomous and primary decision maker of
most decision-making theories reflect biases of
Western culture and ignore the influence of family
members and the larger social networks. Approaches
such as those required by the Patient Self-Determi-
nation Act may not be appropriate for members from
non-Western cultures. Policy makers need to find
ways to allow flexibility to support values and norms
of various racial or ethnic groups in order to respect
and protect rights of patients and their families.
Health care providers who work with patients and
families from diverse racial or ethnic backgrounds
need to know more about cultural differences and
influences. Previous reviews aimed at clinical audi-
ences have provided concrete advice about how
clinicians can increasingly understand and respect
diverse health beliefs and practices, learn about
diverse cultural values and norms, build trust, and
avoid presuming that the views of individuals from
the same racial or ethnic background are uniform
(Barker, 1992).
In sum, research to date suggests that race, eth-
nicity, and culture have powerful effects on end-of-life
decision making. Although the complexity of this area
precludes simple conclusions, research on diversity
and the end of life has the potential not only to ad-
vance theoretical understandings of culture and aging
but also to improve care for older adults at a time in
their lives where they may be especially vulnerable.
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Received November 1, 2004
Accepted February 21, 2005
Decision Editor: Linda S. Noelker, PhD
Vol. 45, No. 5, 2005 641
... Ongoing conversations about end-of-life care between patients, important people in their lives and healthcare professionals are key to reflect on fundamental and often sensitive questions around future and end-of-life care, and to explicate and discuss values and wishes (Fulmer et al., 2018;Kwak & Haley, 2005). Multiple approaches to such conversations exist. ...
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... For instance, patients with ethnically minoritized backgrounds less often access and complete ACP (Portanova et al., 2017). Additionally, aspects like health literacy, language proficiency, non-verbal communication, conversations about diagnoses, cultural and religious norms and values about death and dying as well as family structures or sexual identity can impact end-of-life choice, communication and care experiences (Barrett & Wholihan, 2016;Bulut & Fikkers, 2022;Chou et al., 2015;Kwak & Haley, 2005;Napier et al., 2014;Seelman et al., 2018). ...
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This study examines the relationships between patient characteristics and surrogate decision maker characteristics on surrogates' preferences for life-sustaining treatments. Caucasian and African-American caregivers and noncaregivers (n=110) responded to a vignette involving a medical crisis in a hospitalized older man who suffered cardiac arrest, one of the most common causes of death among older Americans. This man was described as either a cognitively intact or moderately demented family member. Participants made decisions regarding cardiopulmonary resuscitation (CPR), CPR and ventilation, and CPR and tube feeding. Analyses followed a 2 (cognitive status) 2 (caregiving status) 2 (racial background) analysis of covariance design, with education and income used as covariates. In general, participants were less likely to initiate life-sustaining treatments in demented patients. Caucasian caregivers were less likely to initiate CPR and ventilation and CPR and tube feeding. Results indicate that characteristics of the patient and the interplay between cultural issues and experience with caregiving affect surrogate judgements regarding life-sustaining treatments.
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Objective. —To study differences in the attitudes of elderly subjects from different ethnic groups toward disclosure of the diagnosis and prognosis of a terminal illness and toward end-of-life decision making.
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Aims were to determine acceptability of a full range of end-of-life decision options and identify related variables; 388 Black and White older adults ages 60-100 responded to 17 decision situations depicting terminal and nonterminal conditions with a very low quality of life, rating the acceptability of 7 end-of-life options per decision situation, and completed demographic, health, and psychosocial measures. Despite low quality of life, maintaining Life (striving to live and seeking treatment) was the most acceptable option, but a significant minority of participants wished to end life (suicide, assisted suicide, or euthanasia) and a moderate number wished to defer the decision to others. In hierarchical regressions, psychosocial variables (religiosity, values, fear of death, etc.) contributed significantly (p < .05) to decisions beyond the effects of demographic and health variables.
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Background: The relationship of do-not-resuscitate (DNR) orders to patient and hospital characteristics has not been well characterized.Methods: This observational study of a nationally representative sample of 14 008 Medicare patients hospitalized with congestive heart failure, acute myocardial infarction, pneumonia, cerebrovascular accident, or hip fracture evaluated the relationship of DNR orders to patient sickness at admission, functional impairment, age, disease, race, gender, preadmission residence, insurance status, and hospital characteristics.Results: Of the 14 008 patients, DNR orders were assigned to 11.6%. Patients with greater sickness at admission and functional impairment received more DNR orders (P<.001) but even among patients in the sickest quartile (with a 65% chance of death within 180 days), only 31% received DNR orders. The DNR orders were assigned more often to older patients after adjustment for sickness at admission and functional impairment (P<.001), and DNR order rates differed by diagnosis (P<.001). After adjustment for patient and hospital characteristics, DNR orders were assigned more often to women and patients with dementia or incontinence and were assigned less often to black patients, patients with Medicaid insurance, and patients in rural hospitals.Conclusions: Do-not-resuscitate orders are assigned more often to sicker patients but may be underused even among the most sick. Sickness at admission and functional impairment do not explain the increase in DNR orders with age or the disparity across diagnosis. Further evaluation is needed into whether variation in DNR order rates with age, diagnosis, race, gender, insurance status, and rural location represents differences in patient preferences or care compromising patient autonomy.(Arch Intern Med. 1995;155:2056-2062)
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Objectives. —To determine life-sustaining treatment preferences among nursing home residents, whether information regarding cardiopulmonary resuscitation (CPR) affected these preferences, and with whom treatment preferences had been discussed, and to identify factors associated with CPR preferences.Design. —In-person survey.Setting. —Forty-nine randomly selected nursing homes.Subjects. —Four hundred twenty-one randomly selected nursing home residents capable of making decisions.Main Outcome Measures. —Preferences regarding CPR, hospitalization, and enteral tube feedings, and individual factors associated with CPR preferences.Results. —Of 1458 randomly selected nursing home residents assessed for the ability to participate in the study, 552 residents (38%) were eligible to participate and 421 agreed to be interviewed. Sixty percent of participants able to participate in the decision reported that they would elect CPR, 89% would choose hospitalization if seriously ill, and 33% would elect enteral tube feedings if no longer able to eat because of permanent brain damage. Individual factors associated with preferences for CPR included the following: African-American ethnicity, high self-reported physical mobility, belief that most important medical care decisions should be made by the doctor, moderate-to-severe impairment in daily decision-making skills, and not having a spouse. Fourteen percent changed their preference from preferring CPR to not preferring CPR after receiving additional information about CPR procedures. Twelve percent reported having discussed preferences with health care providers, and 31% discussed preferences with family members.Conclusions. —More than half of nursing home residents capable of making decisions preferred the use of CPR. Few had discussed their preferences with health care providers. Individual preferences should be assessed when considering the use of life-sustaining treatments.(JAMA. 1995;274:1775-1779)
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Although major efforts are underway to improve end-of-life care, there is growing evidence that improvements are not being experienced by those at particularly high risk for inadequate care: minority patients. Ethnic disparities in access to end-of-life care have been found that reflect disparities in access to many other kinds of care. Additional barriers to optimum end-of-life care for minority patients include insensitivity to cultural differences in attitudes toward death and end-of-life care and understandable mistrust of the healthcare system due to the history of racism in medicine. These barriers can be categorized as institutional, cultural, and individual. Efforts to better understand and remove each type of barrier are needed. Such efforts should include quality assurance programs to better assess inequalities in access to end-of-life care, political action to address inadequate health insurance and access to medical school for minorities, and undergraduate and continuing medical education in cultural sensitivity.