End‐of‐Life Care in Black and White: Race Matters for Medical Care of Dying Patients and their Families

Abstract

Objectives: To compare the end‐of‐life medical care experienced by African‐American and white decedents and their families. Design: Cross‐sectional, retrospective survey with weighted results based on a two‐stage probability sampling design. Setting: Hospitals, nursing homes, and home‐based medical services across the United States. Participants: Surrogates (N=1,447; primarily family members) for decedents from 22 states. Measurements: Validated end‐of‐life care outcomes concerning symptom management, decision‐making, informing and supporting families, individualized care, coordination, service utilization, and financial impact. Results: Family members of African‐American decedents were less likely than those of white decedents to rate the care received as excellent or very good (odds ratio (OR)=0.4). They were more likely to report absent (OR=2.4) or problematic (OR=1.9) physician communication, concerns with being informed (OR=2.5), and concerns with family support (OR=2.6). Family members of African Americans were less likely than those of whites to report that the decedent had treatment wishes (OR=0.3) or written advance care planning documents (OR=0.4). These differences persist when limiting the sample to respondents whose expectations for life‐sustaining treatments matched treatments received. Family members of African‐American decedents also were more likely to report financial hardship due to savings depletion (OR=2.1) or difficulty paying for care (OR=2.0) and that family/friends (OR=2.0) or home health workers (OR=1.9) provided home care. Conclusion: This national study brings evidence that racial disparities persist into end‐of‐life care, particularly regarding communication and family needs. Results also suggest different home care patterns and levels of financial impact.