In the United States, the dominant discourse about illness, dying and death focuses on autonomy, independence, self-control, and individual choice. The health care system reinforces this individualistic focus through the legal structures of advance directives and informed consent. This focus on the individual and on planning for death presupposes a particular situation and assumptive world that include the following elements:

• the individual is the primary decision-maker;
• the individual has an interest in being in charge;
• there is a clear communication and understanding between the individual and the medical team about diagnosis, prognosis, and options;
• the individual has equal financial access to the different options offered;
• the individual has the power and sense of entitlement to make whatever choice is desired;
• the individual is competent to make choices;
• the individual values discussing and planning for death;
• the individual has a spiritual orientation that does not emphasize divine interventions, and allows for choice in time and manner of death (Koenig, 1997).

There are many people in the United States for whom at least some of these conditions do not pertain. The model above is particularly inadequate to account for the experiences and values of persons who are in one way or another culturally different or socially disadvantaged. This includes ethnic and religious minorities for whom individual decision-making is not a priority. Persons who are economically disadvantaged also do not fit the conditions of an end-of-life model that assumes equal access to different options. The same may be true of persons with disability. In fact, a social or minority model for conceptualizing disability may be more suitable than the medical model because many of the barriers that confront disabled people are of social origin, involving widespread devaluation of this particular form of diversity.

Social and cultural groups vary with regard to beliefs and opinions regarding end-of-life decision-making. This includes the appropriateness of talking about and planning for death, informing persons that they are dying, and the roles of the individual, family members, and physicians regarding end-of-life decisions. These groups also vary in even more basic dimensions (such as orientation to the future, conceptions of the self and personhood, and beliefs about the rights of the individual) that may have implications for end-of-life decision-making. In addition, individual differences within social groups can be as great as, or greater than, differences between groups because individuals are often exposed to multiple and sometimes contradictory systems of values. Similarly, individuals from the same demographic group do not all think the same way. Another variable is that group experiences and the system of values affecting attitudes and behavior are not fixed. Rather they are constantly evolving within specific social and historical contexts. Finally, diversity factors do not apply to minorities only, and are relevant not only to individuals and their families, but also to professional care providers (Koenig, 1997). Diversity considerations are therefore critical in developing a psychological agenda for end-of-life issues, especially in a demographically diverse and socially stratified country like the United States.

A diversity perspective shows that the ethical and practical questions that have dominated the national debate on the end of life are not universal concerns. For example, persons of Chinese descent may place a value on protecting the dying person from negative information (Hallenbeck, Goldstein, & Mebane, 1996), and therefore may not discuss impending death with the dying person. Similarly, family dynamics in recent immigrants from Mexico or Korea may tolerate less individual autonomy than is permitted in families of European or African descent that have not recently immigrated (Field & Cassel, 1997). In addition, in many cultural and religious traditions, there may be an expectation that women rely on the authority and advice of male authorities (e.g., family members, professionals, etc.) for decision-making. In some traditions, there may also be an expectation of women's self-sacrifice (Wolf, 1996). Further, planning about dying is contrary to traditional Navajo values, particularly the value of "avoiding thinking or speaking in a negative way ('doo'ajĖniidah')" (Carrese & Rhodes, 1995, p. 828). In this tradition, discussion of negative information is harmful in that it may bring about a feared negative outcome. Finally, among some ethnic minorities, longevity may be an intrinsic good, independent of health status.

Studies have found that African Americans and Hispanics are more likely than European Americans to express a preference for life-sustaining treatment, regardless of the state of the disease, and independent of educational level (Caralis, Davis, Wright, & Marcial, 1993; Morrison, Zayas, Mulvihill, Baskin, & Meier, 1998). These preferences may be related to negative experiences with the medical system (including inadequate care, as well as difficulties in negotiating their needs), leading to a lack of trust in professional advice (Hallenbeck et al., 1996; Koenig, 1997).

Further examples of diverse positions that are socially based include people in the disability community, who express serious concern about sanctioning assisted suicide. A common attitude among the non-disabled indicates that some would rather be dead than disabled, which, taken in the context of medical-industry emphasis on cost savings, could lead to withholding critical services to people with disabilities. Such concerns regarding the effects of devaluation and cost-saving strategies are also highly relevant to other disenfranchised groups such as people suffering from alcohol and drug abuse or dependence.

Issues of social, economic, and cultural diversity become even more critical in decisions that may affect the timing of death. In the United States, no matter how carefully any safeguards are framed, such decisions are practiced in a context of social inequality, bias, and unequal access to services. In regard to assisted suicide and euthanasia, it has been argued that the persons who are the most vulnerable to coercion or abuse are those "whose autonomy and well-being are already compromised by poverty, lack of access to good medical care, or membership in a stigmatized social group" (New York State Task Force on Life and the Law, 1994, pp. vii-viii). This argument has been extended to include all types of end-of-life decisions (Canetto & Hollenshead, 1999; Orentlicher, 1997). Older persons, women, religious and ethnic minorities, sexual minorities, and persons with disabilities who are seriously ill, may be particularly likely to be perceived as burdensome by the medical system. Furthermore, they may also have a lower sense of entitlement to resources, and may come to see themselves as appropriate candidates for an accelerated death.

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References

Canetto, S. S., & Hollenshead, J. (1999). Gender and physician-assisted suicide: An analysis of the Kevorkian cases, 1990-1997. Omega, 40, 165-208.

Caralis, P. V., Davis, B., Wright, K., & Marcial, E. (1993). The influence of ethnicity and race attitudes toward advance directives, life-prolonging treatments, and euthanasia. Journal of Clinical Ethics, 4, 155-165.

Carrese, J. A., & Rhodes, L. A. (1995). Western bioethics on the Navajo reservation. JAMA, 274, 826-829.

Field, M. J., & Cassel, C. K. (Eds.). (1997). Approaching death: Improving care at the end-of-life. Washington, DC: National Academy Press.

Hallenbeck, J., Goldstein, M. K., & Mebane, E. W. (1996). Cultural considerations of death and dying in the United States. Clinics in Geriatric Medicine, 12, 393-406.

Koenig, B. A. (1997). Cultural diversity in decisionmaking about care at the end of life. In M. J. Field, & C. K. Cassel (Eds.), Approaching death: Improving care at the end-of-life (pp. 363-382). Washington, DC: National Academy Press.

Morrison, R. S., Zayas, L. H., Mulvihill, M., Baskin, S. A., & Meier, D. E. (1998). Barriers to completion of health care proxies: An examination of ethnic differences. Archives of Internal Medicine, 158, 2493-2497.

New York State Task Force on Life and the Law (1994). When death is sought: Assisted suicide and euthanasia in the medical context. Albany, NY: Health Education Services.

Orentlicher, D. (1997). The Supreme Court and physician-assisted suicide: Rejecting assisted suicide but embracing euthanasia. The New England Journal of Medicine, 337, 1236-1239.

Wolf, S. M. (1996). Gender, feminism, and death: Physician-assisted suicide and euthanasia. In S. M. Wolf (Ed.), Feminism and bioethics: Beyond reproduction (pp. 282-317). New York: Oxford University Press.

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