Abstract

African-Americans are less likely to write advance directives than white Americans. Little is known about African-Americans' perceptions of planning for who would speak for them if they were unable to speak for themselves. Health professionals' lack of knowledge about culture, ethnicity and/or religion is an obstacle to effective end-of-life care. African-American seniors' perspectives are explored and recommendations are made to healthcare providers, the African-American community, and the healthcare system in general. A community-based participatory research (with focus groups) approach was used to produce knowledge with participants. A community advisory board was active in all aspects of the research. A virtue ethics framework was used to maintain the integrity of the research. The history and ethics of conducting research was reviewed. Forty-five female and 7 male African-American seniors (aged 59-92) participated in the nine, one time, focus groups. The research data revealed thirty themes which were divided into five primary categories: trust, fear, relationships, lack of information/knowledge, and procrastination; and six secondary categories: deracination (cultural uprooting), deterioration of family/community, past discrimination, experience, self-fulfilling prophecy, and religion. Study participants connected deterioration of the African-American community and family to ongoing discrimination and racism and cited this as contributing to the reluctance to write advance directives. Another major finding is that choosing a proxy decision-maker requires “analysing personal relationships” and this can be painful and cause avoidance of addressing advance care planning. The researcher had not previously identified this perception in the literature.