A place called LIFE: exploring the advance care planning of African-American PACE enrollees

The goals of this exploratory study were (a) to describe, among African-American PACE (Program of All-Inclusive Care for the Elderly) enrollees, verbalized preferences for end-of-life care as compared to preferences for care as documented in their medical record and (b) to explore the personal values that inform end-of-life decision making among these frail elders. Medical record review and semi-structured interviews generated descriptive and qualitative data for 18 African-American enrollees in a PACE program located in a large eastern city of the United States. Review of verbalized and documented preferences for end-of-life care among participants indicated that most preferred life-sustaining treatments. In addition, findings suggest that these PACE enrollees had limited information or understanding of the interventions and terminology associated with advance directives. Content analysis of interviews indicated that end-of-life decision making was influenced by the desire to maintain usual activities of daily living; to avoid burdening caregivers; and to remain in control of personal health care. Furthermore, these African-American elders relied on faith in God as central to medical decision making, believing ultimately that God controls the end of life. This research may enhance the ability of social workers, in collaboration with other members of PACE or similar interdisciplinary teams, to understand the values and attitudes associated with the preferences of older African Americans for care at the end of life. These findings suggest future research is needed to ensure advance care planning acknowledges and responds to the values and preferences of African-American PACE enrollees for the end of life.