Measuring the quality of dying in long-term care

OBJECTIVES: To describe two versions of a new measure, The Quality of Dying in Long-Term Care, for postdeath administration to surrogate respondents (staff and family caregivers) of all decedents (QOD-LTC) and of cognitively intact decedents (QOD-LTC-C) who die in nursing homes (NHs) and residential care or assisted living (RC/AL) facilities. DESIGN: Using two levels of exploratory factor analysis, 15 candidate items for the QOD-LTC and 36 candidate items for the QOD-LTC-C were tested using multiple criteria to determine factor structure and interpretability of the quality of dying in long-term care (LTC). SETTING: One hundred seventeen RC/AL facilities and 31 NHs in FL, MD, NC, and NJ. PARTICIPANTS: Family (n=439) and staff (n=332) caregivers of 633 decedents from a stratified random sample from RC/AL facilities and NHs in four states. MEASUREMENTS: Trained interviewers asked respondents to rate statements describing potentially important aspects of the quality of dying using a 5-point Likert scale. The scale items were analyzed using exploratory factor analysis with communalities set to unity using a Promax rotation. RESULTS: The 11-item QOD-LTC (alpha=0.66), appropriate for surrogate respondents for all decedents, consists of three domains (personhood, closure, preparatory tasks). The 23-item instrument for surrogate respondents of cognitively intact decedents, the QOD-LTC-C (alpha=0.85), consists of five domains (sense of purpose, closure, control, social connection, preparatory tasks). CONCLUSIONS: The QOD-LTC and QOD-LTC-C are psychometrically acceptable measures of the quality of the dying experience, developed for and tested in LTC settings. Use of these measures can increase understanding of the dying experience in LTC.