Quality of dying in the ICU: ratings by family members

STUDY OBJECTIVES: To explore the quality of the dying experience and associations to higher quality ratings for people who died in an ICU. DESIGN: Retrospective study using medical record review and surveys of family members with the Quality of Dying and Death (QODD) instrument. SETTING: Four ICUs affiliated with a university and a Veterans Affairs Medical Center. PARTICIPANTS: Ninety-four family members of 38 ICU decedents. MEASUREMENTS AND RESULTS: We explored associations between components of the ICU experience and the overall rating of the quality of the dying experience. Overall, family members reported that symptoms were poorly controlled: pain under control most or all of the time in 47%, and breathing comfortably most or all of the time in 3% of patients. Families expressed a moderate and variable view of the quality of dying resulting in an overall ICU QODD score of 60 +/- 14 (on a scale of 0 to 100) mean +/- SD]. Higher ICU QODD scores were associated with control of pain (r = 0.42, p = 0.009), control of events (r = 0.62, p < 0.001), a "preparation for death" aspect of the dying experience--feeling at peace with dying (r = 0.69, p < 0.001), and a "whole-person concern"--keeping one's dignity and self-respect (r = 0.50, p < 0.001). CONCLUSIONS: After adjusting for symptom and personal care scores, certain whole-person and preparation-for-death aspects of the dying process, and not aggressiveness of end-of-life care, remained the most associated to quality ratings. While future research should explore the important predictors of quality of dying in the ICU, this study suggests that care at the end of life in the ICU include not only managing pain, but also supporting dignity, respect, and peace, and maximizing patient control.