African American Bereaved Family Members' Perceptions of Hospice Quality: Do Hospices with High Proportions of African Americans Do Better?

Abstract

Research suggests that racial differences in end-of-life care persist even among patients enrolled in hospice. The objective of the study was to examine the association between bereaved family members' satisfaction with hospice services and the proportion of African American (AA) patients in hospice. The 2007 and 2008 Family Evaluation of Hospice Care (FEHC) Survey examined family members' perceptions of the quality of care on several dimensions including: unmet need for pain, dyspnea, and emotional support; being informed about the patient's condition and what to expect as the patient was dying; being informed about medications and treatments for symptoms; coordination of care; and overall satisfaction with care. We examined the association between family members' perception along each domain and the proportion of AAs served by hospices surveyed. Of the 11,892 AA decedents in 678 hospice programs, 53.7% were female. The leading cause of death was cancer (51.6%). On univariate analysis, family members of decedents who died in hospices that had higher proportions of AAs were less likely to have concerns about unmet pain needs (odds ratio [OR] 0.84, 95% confidence interval [CI] 0.72-0.98), more likely to have concerns about coordination of care (1.28, 1.17-1.40), and less likely to perceive care as excellent or very good (0.73, 0.63-0.84). Coordination-of-care concerns and lower overall rating of care persisted in multivariable analyses. There were no other significant associations between family perceptions and proportions of AAs in hospice. Among hospices with higher proportions of AAs, family members have more concerns about coordination of care and have lower overall perceptions of quality.