Understanding End-of-Life Decision-Making Terminology Among African American Older Adults

The purpose of the current study was to examine understanding of end-of-life (EOL) decision-making terminology among family caregivers of African American older adults with dementia. This qualitative descriptive study was part of a larger mixed-methods study from which a subset of caregivers (n = 18) completed interviews. Data were analyzed using descriptive statistics and content analyses guided by methods of qualitative analysis. Caregiver interpretation of EOL decision-making terminology varied between associations before and/or after death. EOL decision making was most often a family decision, based on past experiences, and included reliance on resources such as faith or spirituality and health care providers. Patients and families attach meaning to health care terms that should be aligned with health care providers' understanding of those terms. Results provide insight to improve EOL decision making in this population via tailored interventions for patients, families, and health care providers.