State Variation in Potentially Burdensome Transitions Among Assisted Living Residents at the End of Life

Although assisted living communities are becoming increasingly common places of care for frail older adults in the US, little is known about the quality of their end-of-life care.¹ Unlike nursing homes, assisted living communities are regulated solely by states; prior research suggests that there is considerable state variation in the end-of-life trajectories of assisted living residents.² In contrast with the abundant literature on the end-of-life experience of nursing home residents, scant data are available on national trends related to the dying experience of assisted living residents, particularly their transitions at the end of life.

Burdensome transitions, such as transitions very close to death and repeated hospitalizations, have been studied as an indicator of poor end-of-life care in nursing homes.^1,3 The goals of this study were to describe potentially burdensome transitions among assisted living residents at the end of life and to examine variations by US state.

This retrospective cohort study relies on secondary administrative claims data that were obtained through a data use agreement with the Centers for Medicare & Medicaid Services and was therefore deemed exempt from informed consent by the Brown University Institutional Review Board. The study followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline.

This study included Medicare beneficiaries who died in 2018 and had resided in a 9-digit zip code corresponding to an assisted living community with 25 or more beds⁴ on day 120 before death. Hospitalizations were identified with the Medicare Provider Analysis and Review file. Multiple Medicare administrative claims records were used to infer decedents’ locations for each day in the last 3 days of life (eMethods in the Supplement).

In accordance with our previous work,¹ we considered 3 types of potentially burdensome transitions: (1) health care transitions during the last 3 days of life, (2) 3 or more all-cause hospitalizations during the last 90 days of life, and (3) 2 or more hospitalizations for urinary tract infections, sepsis, pneumonia, and dehydration during the last 120 days of life. For this study, the outcome was the percentage of decedents present in assisted living on day 120 before death who experienced any type of burdensome transition. Descriptive statistics are reported for the decedent cohort and by state. This analysis was limited to assisted living communities with 25 or more beds in 48 contiguous states and the District of Columbia. Statistical analyses were conducted with SAS version 9.4 (SAS Institute).

Of 37 668 Medicare beneficiaries who died in 2018 and were present in assisted living on day 120 before death, 7015 (18.6% [95% CI, 18.2%-19.0%]) experienced at least 1 potentially burdensome transition (Table). The most common type was a health care transition during the last 3 days of life, which affected 4336 decedents (11.5% [95% CI, 11.2%-11.8%]). The Figure presents state-level variations in burdensome transitions among assisted living decedents, ranging from 8.9% in Wyoming to 30.9% in North Dakota; half of the states studied had rates between 15.8% and 20.3% (IQR, 4.5%).

Our results suggest that nearly 1 in 5 assisted living decedents in this study experienced a potentially burdensome transition in their last 120 days of life. This rate was similar to that found for nursing home decedents.³ In addition, the rate of potentially burdensome transitions in this study varied widely across states. The most common transition observed in this cohort was a health care transition in the last 3 days of life, which is associated with lower quality of care as reported by bereaved family members and close friends.⁵ Our results provide support for quality concerns for end-of-life care among assisted living residents.²

This study has some limitations. First, multiple hospitalizations for Medicare Advantage beneficiaries might be underreported because the Medicare Provider Analysis and Review file captures approximately 92% of the hospitalizations.⁶ Second, our results are not generalizable to persons in assisted living communities with fewer than 25 beds.

Despite its limitations, our study provides a first national look, to our knowledge, at potentially burdensome transitions among assisted living residents at the end of life. Future studies are needed to explain the state variation observed in this study and how it relates to factors such as residents’ comorbidities, cultural differences in end-of-life preferences, end-of-life care practices in assisted living, local hospice practice and utilization patterns, and state regulations of residential care settings.

Accepted for Publication: October 9, 2021.

Published Online: December 20, 2021. doi:10.1001/jamainternmed.2021.7260

Corresponding Author: Xiao (Joyce) Wang, PhD, Center for Gerontology and Healthcare Research, School of Public Health, Brown University, 121 S Main St, Providence, RI 02906 (xiao_wang1@brown.edu).

Author Contributions: Dr Wang had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: All authors.

Acquisition, analysis, or interpretation of data: Wang, Gozalo, Thomas, Bélanger.

Drafting of the manuscript: Wang, Teno, Dosa, Thomas, Bélanger.

Critical revision of the manuscript for important intellectual content:

All authors.

Statistical analysis: Wang, Gozalo.

Obtained funding: Dosa, Bélanger.

Administrative, technical, or material support: Teno, Thomas, Bélanger.

Supervision: Gozalo, Thomas, Bélanger.

Conflict of Interest Disclosures: Dr Teno reported receiving grants from the National Institute on Aging, the Gordon and Betty Moore Foundation, the Centers for Medicare & Medicaid Services, and the Center for Medicare and Medicaid Innovation. Dr Gozalo reported receiving grants from the National Institute on Aging, the National Institutes of Health, and Ocean State Research Institute. Dr Dosa reported receiving grants from the National Institute on Aging, the US Department of Veterans Affairs, and the Patient-Centered Outcomes Research Institute. Dr Thomas reported receiving grants from the National Institute on Aging, the US Department of Veterans Affairs, and the Patient-Centered Outcomes Research Institute. Dr Bélanger reported receiving grants from the National Institute on Aging, the National Institute of Mental Health, the National Institutes of Health, and Ocean State Research Institute. No other disclosures were reported.

Funding/Support: This study was supported by grant R01AG066902 from the National Institute on Aging.

Role of the Funder: The National Institute on Aging had no role in the design and conduct of the study; the collection, management, analysis, or interpretation of the data; the preparation, review, or approval of the manuscript; and the decision to submit the manuscript for publication.

Additional Information: Analytical syntax files can be accessed at https://doi.org/10.26300/3ens-6r83.