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

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.