End-of-life care in black and white: race matters for medical care of dying patients and their families.
OBJECTIVE
To compare the end-of-life medical care experienced by African-American and white decedents and their families.


METHODS
Cross-sectional, retrospective survey with weighted results based on a two-stage probability sampling design.


METHODS
Hospitals, nursing homes, and home-based medical services across the United States.


METHODS
Surrogates (N=1,447; primarily family members) for decedents from 22 states.


METHODS
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.


CONCLUSIONS
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.
Welch
Lisa C
LC
Department of Community Health, Brown Medical School, Providence, Rhode Island, USA.
Teno
Joan M
JM
Mor
Vincent
V
D000368:Aged; D044383:Black People / Q000208:ethnology*; D003142:Communication; D003430:Cross-Sectional Studies; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D006296:Health Services / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D012189:Retrospective Studies; D013727:Terminal Care / Q000191:economics; D014481:United States; D044465:White People / Q000208:ethnology*; D001741:Black or African American