(Crawley et al., 2000). Abuses suffered during slavery and its aftermath (Jim Crow laws, segregated, second-class medical care systems, etc.) resulted in poorer management of diseases and more reliance on alternative or folk medicine. Medical experimentation, such as that documented in the National Public Health Service Syphilis Study at Tuskegee, has left a legacy of mistrust vis-à-vis clinical trials and other “experimental” forms of medical treatment that other groups may embrace as a last opportunity for cure, but that African Americans may view as denial of good medical care (Freimuth et al., 2001; Shavers et al., 2000). Added to this history are recent reports of unequal treatment or mistreatment and denial of best practices in the health care system (Freeman and Payne, 2000). Documentation such as this indicates that the mistrust reported by African Americans about the U.S. health care system is well founded in many instances.
This distrust may prevent many from being initiators of end-of-life care dialogues with their physicians or acceptors of offers such as palliative or hospice care; the former is not well understood, and the latter is deemed a “death sentence” and “giving up.” This distrust may be particularly acute in settings where so few of the health care professionals who enter these discussions with minority patients are themselves minority (Massad, 2000).
Because African Americans tend to have a higher incidence of violent deaths and higher death rates from cancer, AIDS, and other chronic illnesses, it is imperative that these communities be educated about palliative care and end-of-life preparatory issues. At present, denial of death (even terminal illness) may be viewed by the African-American community as a “healthy response,” as fighting to live at all costs. Communities must be educated to the choices that are (or should be) available and that a denial of death may not be the healthiest response to the end of life’s journey. Indeed, such a response may result in not getting the best care at the end of life. Conversely, it must be explained that palliative care does not mean “giving up” and dialogues about palliative care and end-of-life care are not a subterfuge for further denial of access to good medical care. Cultural and personal values must be respected, and physicians, allied health care professionals, and clergy must be trained to handle these discussions and the decisions patients and their families must face.
What role does a lack of access to health care play in shaping attitudes about end-of-life care? Studies report that African Americans are admitted to intensive care units (ICUs) less often than whites (Yergan et al., 1987). African Americans are less likely to opt for discontinuation of life support measures (Caralis et al., 1993). There is a strong perception that they will