End-of-life Care

Discussions on Advance Care Planning and End-of-Life Issues

Active end-of-life care planning is not an unfamiliar concept to most African American older adults. Providers who have these discussions, however, should remember that older adults might be reluctant to participate due to an understandable mistrust in the health care system based on past history of segregation and discrimination toward African Americans.

Several studies suggest that African Americans are less likely to complete advance directives such as do-not-resuscitate (DNR) orders or living wills (Caralis et al. 1993; Eleazar et al., 1996; Hopp & Duffy, 2000; Mouton, 2000).

Older adults may feel that if they decided to opt for “do-not-resuscitate,” that would give the system the license to provide sub-standard care or give up on them “too-soon”. Religious beliefs may also play a role, in that many older African Americans believe that God is ultimately in control, and is the only one who can determine the timing of death.

Among both African American patients and physicians, more have been found to favor aggressive life prolonging treatment in the case of terminal illness than among comparison White groups (Caralis, 1993; Hopp & Duffy, 2000; Mebane et al. 1999; Mouton, 2000). Mouton (2000) points out that life support may be equated with life, and that any effort at withholding life-sustaining therapies might be seen as another attempt of genocide by predominantly Caucasian institutions, recalling the history of unethical experiments on African Americans such as the Tuskegee Syphilis Study.

Some older adults will request tube feeding even in the face of terminal illness. Providers, then, should be very sensitive to issues regarding refusal or withdrawal of tube feedings.

Some African-American families may request that certain diagnoses or disease prognoses be withheld from the patient to shelter them from disturbing information. Other patients and families favor forthright discussion of all medical issues and treatment plans.

Some patients may prefer that their loved ones be the conduits for information. Direct provider-patient communication may be limited by patients’ desire not to know the full implications of their illness.

The loved ones may be a patient’s family members or fictive kin. Fictive kin are people that are considered “family”, as the result of longstanding relationships, but may not be linked directly by blood ties. These individuals may be serving as the primary care giver or even as the surrogate decision makers and may be sometimes more involved than the directly related family members.