State Variability in Assisted Living Residents\u27 End-of-Life Care Trajectories

Objective: A growing and increasingly vulnerable population resides in assisted living. States are responsible for regulating assisted living and vary in their requirements. Little is known about how this variability translates to differences in the dying experiences of assisted living residents. The objective of this study is to describe assisted living residents’ end-of-life care trajectories and how they vary by state. Design: Observational retrospective cohort study. Setting and Participants: Using Medicare data and a methodology developed to identify beneficiaries residing in larger assisted living communities (25+ beds), we identified a cohort of 40,359 assisted living residents in the continental United States enrolled in traditional Medicare and who died in 2016. Methods: We used Medicare data and the Residential History File to examine assisted living residents’ locations of care and services received in the last 30 days of life. Results: Nationally, 57% of our cohort died outside of an institutional setting, that is, hospital or nursing home (n = 23,165), 18,396 of whom received hospice at the time of death. Rates of hospitalization and transition to a nursing home increased during the last 30 days of life. We observed significant interstate variability in the adjusted number of days spent in assisted living in the month before death [from 13.6 days (95% confidence interval [CI] 11.8, 15.4) in North Dakota to 24.0 days (95% CI 22.7, 25.2) in Utah] and wider variation in the adjusted number of days receiving hospice in the last month of life, ranging from 2.1 days (95% CI 1.0, 3.2) in North Dakota to 13.8 days (95% CI 12.1, 15.5) in Utah. Conclusions and Implications: Findings suggest that assisted living residents’ dying trajectories vary significantly by state. To ensure optimal end-of-life outcomes for assisted living residents, state policy makers should consider how their regulations influence end-of-life care in assisted living, and future research should examine factors (eg, state regulations, market characteristics, provider characteristics) that may enable assisted living residents to die in place and contribute to differential access to hospice services