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Correspondence: 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{at}cas.usf.edu
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Key Words: End of life • Decision making • Diversity • Family caregiving
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 profound effects on end-of-life decision-making processes (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 suggestions 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 gaps in this literature, and to provide recommendations 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 information 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 directives, 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-collection 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 advance 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.
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Review of Current Literature |
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Twenty-four studies used quantitative methods, five studies used qualitative methods, and four studies used both quantitative and qualitative methods. 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 illnesses, 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 findings 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.
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Findings |
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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 advance 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 population, 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 colleagues (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 generally 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, Mexican American, and White adult patients that misconceptions 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 knowledgeable 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 physicians 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, McKinley 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 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 unpredictable, 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 acculturation was associated with more positive attitudes regarding advance-care planning. Murphy and colleagues (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 problematic 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 dementia 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 Support
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 colleagues (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.
Though limited by a small number of studies that examined this topic across studies, older African American adults in both nursing home and community 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 members) 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 decisions 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 Mexican 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 informed of the diagnosis than Japanese American physicians in the United States (Asai, Fukuhara, & Lo, 1995). Thus, for the Japanese group, acculturation 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 disclosure 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 physician should communicate with the patient's family about life-sustaining treatment before discussing it with the patient, whereas only 32% of Japanese American physicians believed so. Similarly, Matsumura and colleagues (2002) found that the more acculturated Japanese (i.e., English-speaking Japanese) 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, Hispanic, 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 methodological 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 Americans, 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 treatments 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 underlying 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.
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Implications for Research, Practice, and Policy |
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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 encouraging 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 approach 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 influence 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 differences 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 measured 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 recognizing 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 individuals 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-Determination 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 audiences 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, ethnicity, 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 advance 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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Footnotes |
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Decision Editor: Linda S. Noelker, PhD
Received for publication November 1, 2004. Accepted for publication February 21, 2005.
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