Culturally Diverse Communities and End of Life Care

By Tom Smith, Ph.D.

 

In 1963, Jessica Mitford wrote her no-holds-barred exposé of American (United States) customs and practices regarding dying and death: The American Way of Death. In her own words, “It is chock a block with their [funeral directors] Wise Sayings, observations, exhortations and philosophical reflections culled from funeral trade magazines and interviews with individual funeral directors and official spokesmen”. Before her own death in 1996, she wrote an updated reprise entitled The American Way of Death Revisited. What may be most enlightening about her observations is that how we die and handle the aftermath is different from culture to culture, ethnicity to ethnicity, religion to religion, country to country. A couple of notable quotes attributed to her are, (regarding death) “Of course I am against it” and when visiting the pyramids of Egypt, “Now there is a society where the funeral industry got completely out of control”. Although, tongue-in-cheek, the point is well made that how we die and what we do next varies from culture to culture and time to time.

A multiplicity of cultures necessarily means that there are numerous different customs, taboos and decision-making processes surrounding advanced planning in a terminal situation and death itself. This means that culture forms the decisions for resuscitation, feeding tubes and the like, the desire to actually know a terminal diagnosis, where to die (at home, in the hospital or in the hospice center) and how to assist in the quality of life for the dying person in their last days or hours (Reference the article on “A Buddhist View: From the Tibetan Book of Living and Dying”). In many cultures, just talking about death is taboo because it may hasten the death or bring sadness and despair to the dying person and their families.

Clearly, any competent therapist (especially in the pluralistic society of the United States) must have some “diversity training” or some education regarding the cultures in which the therapist engages. Clinicians must respect other cultures’ customs and attitudes towards death in order to appropriately explain a person’s illness, health care and probable death. Not to do so may complicate the dying and create a climate of fear, intimidation and lack of trust for all involved; thereby, exacerbating an already difficult state of affairs.

Many cultures do not trust the healthcare system or doctors and may fear that these providers are in fact “trying to kill” the dying person. This may be due to lack of understanding of healthcare processes or past slights or overt discrimination. Identifying the decision makers in various cultures may be problematic. In Asian cultures, it is often the father or the eldest son that makes the decisions. In others, it may be “left to the experts”.

There are numerous barriers to communication in a cross-cultural situation that include language, lack of understanding of medical culture and protocols and the unwillingness of physicians to talk about death with the family. This clearly affects whether advance planning will be made or even addressed. In some cultures, to discuss an Advance Directive is tantamount to “giving up” or “caving in” to the situation. Such blocks to communication influence whether hospice care will be offered or even utilized. Interestingly, hospice serve primarily Caucasians (about 83%), then African Americans (only 8%), followed by Native Americans (6%) and Latinos (only 3%) (National Palliative Care and Hospice Organization, 1995). In some cultures, palliative care is considered giving up or worse, a denial of care.

Ethnic groups differ in their attitudes and use of Advance Directives. Advance Directives can be a cause of family discord if the eldest son or otherwise important person in the family disagrees with it. Catholics endorse Advance Directives and when treatment becomes futile (Muslims are also in agreement on these issues), it is no longer mandatory and action should then be taken to ameliorate any suffering of the dying person, but not to hasten death. If death occurs in the course of reducing suffering, that is acceptable. Sadly, many people do not think they need an Advance Directive because “the doctor knows what I want”. But research shows that doctors and families are poor predictors of a patient’s wishes.

There is a dearth of clear and comprehensive communication in the healthcare culture to those they serve, particularly if they are not White. Additionally, doctors tend to be curt and brief in discussing end-of-life options and translations into the language of the culture at hand are, more often than not, lacking. Emphatically, doctors in general have a difficult time talking about death (it means they failed in some sort of way) in any culture and commonly do not consider the patient’s values or culture! Finally, speaking another language or having limited English skills may complicate interactions or be a block to asking questions or speaking up. Asking a child to translate for a respected adult may compromise the communication due to the obligation of the child to not know private information … or the adult may not want to burden the child by the truth of what they are feeling or what they want.

In conclusion, the informed, competent mental health practitioner, trained in “diversity issues” can be a mediator for the culturally diverse population in its interactions with the healthcare system. They can sensitively and skillfully explain medical terms, treatments, possible outcomes and options to alleviate the emotions and distress of an end-of-life situation.

References

Hern, H.E., Koenig, B.A., Moore, L.J. & Marshall P.A. (1998). The difference that culture can make in end-of-life decision making. Cambridge Quarterly Healthcare Ethics, 7, 27-40.

Mitford, Jessica; The American Way of Death, 1963.

Mitford, Jessica; The American Way of Death Revisited, 1998.

Phipps, E., True, G., & Pomerantz, S. ( 2000). Approaches to End of Life Care in Culturally Diverse Communities. [On-line]. Available: http:/www.lastacts.org/scripts).

Tulsky, J.A., Fischer, G.S., Rose, M.R., & Arnold, R.M. (1998). Opening the black box: How do physicians communicate about advance directives. Annals of Internal Medicine 129(8)441-9.