Turning It Over to God: African American Assisted Living Residents’ End-of-Life Preferences and Advance Care Planning

Abstract

Abstract Objectives Assisted living (AL), a popular long-term care setting for older Americans, increasingly is a site for end-of-life care. Although most residents prefer AL to be their final home, relatively little is known about end-of-life preferences and advance care planning, especially among African American residents. Our research addresses this knowledge gap. Methods Informed by grounded theory, we present an analysis of qualitative data collected over 2 years in a 100-bed AL community catering to African American residents. Data consisted of field notes from participant observation conducted during 310 site visits and 818 observation hours, in-depth interviews with 25 residents, and a review of their AL records. Results Residents varied in their end-of-life preferences and advance care planning, but united in the belief that God was in control. We identified “Turning it over to God” as an explanatory framework for understanding how this group negotiated end-of-life preferences and advance care planning. Individual-level resident factors (e.g., age, pain, and function) and factors reflecting broader cultural and societal influences, including health literacy and care experiences, were influential. Discussion Contradictions arose from turning it over to God, including those between care preferences, planning, and anticipated or actual end-of-life outcomes.