End-of-life care in black and white: race matters for medical care of dying patients and their families

J Am Geriatr Soc. 2005 Jul;53(7):1145-53. doi: 10.1111/j.1532-5415.2005.53357.x.


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.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • African Continental Ancestry Group / ethnology*
  • Aged
  • Communication
  • Cross-Sectional Studies
  • Decision Making
  • European Continental Ancestry Group / ethnology*
  • Family / psychology*
  • Female
  • Health Services / statistics & numerical data
  • Humans
  • Male
  • Retrospective Studies
  • Terminal Care* / economics
  • United States