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.