African American seniors’ perspectives on advance care planning: a virtue ethics community-based participatory research approach

Abstract

Some findings not previously noted in the literature were found in this research. African-Americans are far less likely to write advance directives than white Americans but little is known about African-Americans’ perceptions of planning for who would speak for them if they were unable to speak in critical health situations. Health professionals’ lack of knowledge about culture, ethnicity and/or religion is an obstacle to effective end-of-life care. This research is aimed at exploring African-American seniors’ perspectives and providing health professionals with information to build skills to support ethnically diverse families of patients who are seriously ill and unable to speak. A community-based participatory research (with focus groups) approach was used to produce knowledge with participants from one Midwestern urban community. 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 is reviewed. Forty-five female and 7 male African-American seniors (aged 59-92) participated in the nine, one time, focus groups. A PowerPoint about advance care planning and a questionnaire (based on the literature) were used to stimulate thought prior to focus group discussions. Data revealed 30 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 expressed that African-Americans distrust the dominant society and their families; and have a general fear of death and dying. They 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 “analyzing personal relationships” and this can be painful and cause avoidance of addressing advance care planning. This had not been previously identified in the literature. Recommendations are that healthcare providers treat African-American seniors with respect, and get to know them socially so they aren’t uncomfortable and afraid around them. Participants suggested patients connect with providers and share their goals for health and personal life; and that providers have more information about advance care planning in their curriculum and training. The researcher recommends providers use clinical opportunities to identify situations where they could empower patients to take charge of their advance care planning; and community members should identify their personal value system, and think about quality of life issues. Community education programs by a trusted professional are recommended to give African-American seniors information needed to understand the importance and urgency of advance care planning. Assistance of a skilled professional to assist with difficult decision-making and planning is also needed. Further research is needed to better understand how the African-American historical experience in the United States contributes to their reluctance to engage in advance care planning. Further research is also needed to find the social and economic value and the political implications of advance directives.