Selecting the best instruments to measure quality of end-of-life care and quality of dying in long term care.

OBJECTIVES To compare available instruments and investigate which best measure the quality of end-of-life care (QOC) and quality of dying (QOD) in long term care settings, in terms of validity, reliability, and feasibility. DESIGN Family and professional caregivers of long term care decedents completed postdeath interviews and questionnaires between November 2007 and April 2009. SETTING Nursing home and residential care/assisted living settings in the United States and the Netherlands. PARTICIPANTS Two hundred and sixty four families of decedents with (48%) and without (52%) dementia in the United States, and 70 families and 103 professional caregivers of decedents with dementia in The Netherlands. MEASUREMENTS Ten instruments to evaluate the QOC and QOD in long term care, an additional overall assessment of QOC/QOD, and an assessment of the perception of the relevance and ease of use of each instrument. Criteria for validity, reliability, and feasibility were set forth for good, intermediate, and poor performance. RESULTS None of the instruments scored positively on all criteria. In both countries, of the QOC instruments, the End-of-Life in Dementia-Satisfaction With Care (EOLD-SWC) best met the criteria, followed by the Family Assessment of Treatment at the End-of-Life Short Version, the Family Perception of Care Scale, and Family Perception of Physician-Family Caregiver Communication. Of the QOD instruments, the End-of-Life in Dementia-Comfort Assessment at Dying (EOLD-CAD) and Mini-Suffering State Examination (MSSE) met more of the criteria than others. The EOLD-CAD performed better on content and construct validity than the MSSE. The MSSE performed better on feasibility. CONCLUSION We recommend the EOLD-SWC to measure QOC, and the EOLD-CAD and MSSE to measure QOD in populations with dementia and in mixed long term care populations of nursing home or residential care home/assisted living residents, because they performed best in both countries. Use of the same instruments allows for comparison of the results between studies.