Measuring End-of-Life Care and Outcomes in Residential Care/Assisted Living and Nursing Homes

ContextThe two primary residential options for older adults who require supportive care are nursing homes and residential care/assisted living. More than one-quarter of all deaths in the U.S. occur in these settings. Although the information available on end of life in long-term care has been growing, the comparative suitability of various measures to guide this work is unknown.ObjectivesTo determine the optimal measures to assess end-of-life care and outcomes in nursing homes and residential care/assisted living.MethodsA total of 264 family members of decedents from 118 settings were interviewed and provided data on 11 instruments that have been used in, but not necessarily developed for, long-term care populations; Overall, 20 scales and subscales/indices were evaluated. Measures were compared on their psychometric properties and the extent to which they discriminated among important resident, family, and setting characteristics.ResultsPrioritizing measures that distinguish the assessment of care from the assessment of dying, and secondarily that exhibit an acceptable factor structure, this study recommends two measures of care—the Family Perceptions of Physician—Family Caregiver Communication and the End of Life in Dementia (EOLD)-Satisfaction With Care—and two measures of outcomes—the EOLD-Symptom Management and the EOLD-Comfort Assessment in Dying. An additional measure to assess outcomes is the Mini-Suffering State Examination (MSSE). The care measures and the MSSE are especially valuable as they discriminate between decedents who were and were not transferred immediately before death, an important outcome, and whether the family expected the death, a useful target for intervention.ConclusionDespite these recommendations, measurement selection should be informed not only on the basis of psychometric properties but also by specific clinical and research needs. The data in this manuscript will help researchers, clinicians, and administrators understand the implications of choosing various measures for their work.