Identifying elements of ICU care that families report as important but unsatisfactory: Decision-making, control, and ICU atmosphere

Background: One in five deaths in the United States occurs in the ICU, and many of these deaths are experienced as less than optimal by families of dying people. The current study investigated the relationship between family satisfaction with ICU care and overall ratings of the quality of dying as a means of identifying targets for improving end-of-life experiences for patients and families. Methods: This multisite cross-sectional study surveyed families of patients who died in the ICU in one of 15 hospitals in western Washington State. Measures included the Family Satisfaction in the ICU (FS-ICU) and the Single-Item Quality of Dying (QOD-1) questionnaires. Associations between FS-ICU items and the QOD-1 were examined using multivariate linear regression controlling for patient and family demographics and hospital site. Results: Questionnaires were returned for 1,290 of 2,850 decedents (45%). Higher QOD-1 scores were significantly associated (all P<.05) with (1) perceived nursing skill and competence(β = 0.15), (2) support for family as decision-makers(β = 0.10), (3) family control over the patient's care (β = 0.18), and (4) ICU atmosphere(β = 0.12). FS-ICU items that received low ratings and correlated with higher QOD-1 scores (ie, important items with room for improvement) were (1) support of family as decision-maker, (2) family control over patient's care, and (3) ICU atmosphere. Conclusions: Increased support for families as decision-makers and for their desired level of control over patient care along with improvements in the ICU atmosphere were identified as aspects of the ICU experience that may be important targets for quality improvement. Trial registry: ClinicalTrials.gov; No.: NCT00685893; URL: www.clinicaltrials.gov.