More state oversight needed to improve end-of-life care for assisted living residents

While assisted living communities have become a more common residential care choice for older Americans who require assistance with daily care needs and other supportive services, regulation of these communities vary from state to state and there has been little analysis of care outcomes.  New research looks at end-of-life care in assisted living and found that in states with less rigorous regulations residents were less likely to die with hospice or at home –important markers of quality of care.  The research was led by Helena Temkin-Greener, Ph.D., a professor of Public Health Sciences at the University of Rochester Medical Center, and appears in the journal Health Affairs.

Assisted living communities – which are a type of residential long-term care, are designed for people who need personal and supportive care – have become increasingly popular with older Americans because they can help preserve independence, and with policymakers, because they are a less expensive alternative to nursing homes.  However, unlike nursing homes, which are highly regulated by federal and state governments, issues such as minimum staffing levels and oversight for assisted living communities vary greatly depending upon where a person lives. 

The new research looks at end-of-life care for 100,783 residents in 16,560 assisted living communities who died in 2018-2019, specifically whether they died at home and under hospice care or after transfer to a nursing home or hospital. Temkin-Greener and her colleagues found that overall 60 percent of Medicare fee-for-service beneficiaries residing in assisted living died at home and more than 84 percent of them had hospice care. The probability of dying at home was significantly lower by dual Medicare-Medicaid status but not by race or ethnicity, suggesting dual status residents may have worse access to high quality EOL care.   

Black residents were significantly less likely to be enrolled in hospice before death, but several previous studies have shown that Black families are more likely to advocate for continued and aggressive medical treatment at the end of life, a legacy of mistrust in the health care system. Residents were also less likely to die at home or with home hospice in states with lower regulatory oversight of assisted living communities.

The study authors believe these findings should help inform efforts to ensure a more equitable access to end-of-life care planning and services in assisted living communities, and suggest an important role for state-level regulation of these communities in their implementation.

Additional co-authors include Wenhan Guo, Yechu Hua, Yue Li, Thomas Caprio, and Shubing Cai with the University of Rochester and Lindsay Schwartz with the American Health Care Association. The research was supported with funding from the Agency for Healthcare Research and Quality and the Patrick and Catherine Weldon Donaghue Medical Research Foundation.