Bereaved Family Member Perceptions of Quality of End‐of‐Life Care in U.S. Regions with High and Low Usage of Intensive Care Unit Care

Abstract

Objectives: To compare the quality of end‐of‐life care of persons dying in regions of differing practice intensity. Design: Mortality follow‐back survey. Setting: Geographic regions in the highest and lowest deciles of intensive care unit (ICU) use. Participants: Bereaved family member or other knowledgeable informants. Measurements: Unmet needs, concerns, and rating of quality of end‐of‐life care in five domains (physical comfort and emotional support of the decedent, shared decision‐making, treatment of the dying person with respect, providing information and emotional support to family members). Results: Decedents in high‐ (n=365) and low‐intensity (n=413) hospital service areas (HSAs) did not differ in age, sex, education, marital status, leading causes of death, or the degree to which death was expected, but those in the high‐intensity ICU HSAs were more likely to be black and to live in nonrural areas. Respondents in high‐intensity HSAs were more likely to report that care was of lower quality in each domain, and these differences were statistically significant in three of five domains. Respondents from high‐intensity HSAs were more likely to report inadequate emotional support for the decedent (relative risk (RR)=1.2, 95% confidence interval (CI)=1.0–1.4), concerns with shared decision‐making (RR=1.8, 95% CI=1.0–2.9), inadequate information about what to expect (RR=1.5, 95% CI=1.3–1.8), and failure to treat the decedent with respect (RR=1.4, 95% CI=1.0–1.9). Overall ratings of the quality of end‐of‐life care were also significantly lower in high‐intensity HSAs. Conclusion: Dying in regions with a higher use of ICU care is not associated with improved perceptions of quality of end‐of‐life care.