Specific Diversity Issues in End-of-Life Decision-Making

By Tom Smith, Ph.D.

 

The United States has a culture of rugged individualism, autonomy, self-control, right to privacy and freedom of choice which is reinforced by the healthcare system. It assumes that the individual is in control and is the primary decision-maker, that there is privacy between doctor and patient (think HIPAA), that communication is clear, transparent and understood, that the patient has the financial means to explore all options, that the patient has a sense of entitlement to whatever can be done, that the individual wants to talk about planning for death and that there is no “spiritual impediment” to choice in the time and manner of death. These assumptions work if one is a White, wealthy, health insured, English speaking person embracing the secular values of the time. Nowadays, this is the exception rather than the rule.

Caucasians make up fewer and fewer of the population of the United States (Hispanics are the most rapidly growing group), fewer people of all races and ethnic backgrounds can afford health insurance, many lack any sense of power or control over their lives in an increasingly tenuous economy that is at war and religion is becoming increasingly important in the current climate of fear.

Many ethnic groups in the United States come from cultures where the group has precedence over the individual and the individual decision is not a priority, but rather the select group’s decision is paramount. The values of many of these ethnic groups do not emerge out of capitalism or Los Angeles or New York, but rather their tightly held spiritual and cultural beliefs (think of the current social conflict regarding assisted suicide, Gay marriage and so on). Additionally, there are differences within ethnic and social groups … some liberal and open-minded, others conservative and rigid in thinking and behavior. Moreover, as different groups become acculturated into the culture of the United States, there can be not only intra-social conflict, but also inter-generational conflict regarding values and acceptable behavior. Value systems are not fixed but are in flux. One cannot assume characteristics of a particular group can be applied to the individual. Stereotyping of any kind must be scrupulously avoided!

Attitudes towards differences in gender and what is to be expected from men and women are also important. In the United States, women are encouraged to exercise their power and autonomy and not be subject to the directives or expectations of men (Hillary Clinton). In many other cultures (Middle Eastern, some Asian or Latin) this attitude would be an outrage.

Even more generally, various cultures differ in the more basic dimensions of conceptions of the self and personhood, where one fits in with the group, rights of the individual, attitudes towards the young and the old, orientation to the future or fate or control over one’s destiny. The practitioner must be informed about these differences and also be aware that these differences may not be embraced by the entire culture or there might be generational differences in attitude.

Some ethnic groups, regardless of educational level, due to a negative experiences with the healthcare system, including inadequate care (see next paragraph) and difficulties in negotiating their needs are distrustful of professional advice and often insist on life-sustaining treatment no matter what state of the disease; i.e, even if the situation is obviously terminal. They do not want to be discriminated against and want everything the privileged get.

Inexcusably, repugnantly and shamefully, the poor, disabled, the elderly, sexual minorities, those of low social or economic status or subject to institutional racism are often denied access to palliative services or unaware of the nature, value and availability of hospice care and may be encouraged to accept an accelerated death. They are sometimes considered a drain on the “system” and discounted as expendable. Examples of this include a recent incident in Los Angeles in which a paraplegic, indigent man was thrown out of the hospital in a gown and left to pull himself by his hands along the sidewalk until the police finally intervened; in another case, a poor Latino woman was left to die on the floor of an emergency room … while she screamed in abject misery and pain and her husband pleaded for her life, she was ignored and in fact, died on the floor spurned and neglected. These are only the reported and sensational cases.

Those who are disabled have expressed serious concern about making legal or sanctioning assisted suicide because of the attitude of the able-bodied being that they would rather be dead than disabled. In the context of rationing care and cost saving in the managed care system, there is a very real fear that critical services to people who are disabled will be withheld. This is a particular fear of those with stigmatized conditions such as HIV/AIDS, cancer, alcohol or drug dependence.

Finally, it needs to be said that group experiences and the value systems influencing attitudes and behavior are always evolving within the current socio-cultural context. Moreover, the various diversity factors so far identified (and others) apply not only to minorities, individuals and family systems, but all of us and include the professional health care providers in the entire allied health field.

The bottom line diversity issue here is the context of social inequality, bias, stereotyping, covert and overt discrimination and unequal access to services; that is to say, who gets the care, what kind of care, who provides the care and who is considered a burden to the point that they are coerced overtly or covertly to see themselves as not entitled to adequate care and all of the available resources and thus, candidates for an accelerated death. So much for compassion.

References

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.

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.