nurse holding hand of older adult male
(Credit: Getty Images)

Dual Medicare / Medicaid enrollment, state regulations, and race and ethnicity affect access to end-of-life care in assisted living communities and where residents die, according to a new study published late Monday in the journal Health Affairs.

The findings, the authors concluded, may help inform efforts focused on ensuring equitable access to end-of-life care planning and services in assisted living communities. Research on the effect of hospice care and spending on quality of end-of-life care among assisted living residents is “urgently needed,” they said. 

The study, from the University of Rochester and the National Center for Assisted Living, is the first to show a relationship between regulatory stringency and care quality in assisted living, according to the authors.

Of the 100,783 fee-for-service Medicare beneficiaries living in 16,560 assisted living communities who died in 2018 or 2019, researchers found that almost 60% died in the communities — 84% with home hospice. Another 23.7% died in nursing homes, and 16.6% died in hospitals or emergency departments. 

Previous studies reported that use of hospice in assisted living was associated with fewer institutional services, better end-of-life care and more residents dying in place within their communities.

The authors noted that few assisted living workers have end-of-life care training, and communities — for the most part — provide nonmedical supportive and personal care services. Few studies have examined end-of-life care in assisted living, including where residents die and whether they use hospice services, they said.

Dually eligible residents

Both the place of death and the use of hospice were significantly different for residents enrolled in Medicare alone compared with those enrolled in both Medicare and Medicaid. 

The majority of non-dual enrollees (68%) died in assisted living, compared with 36.9% of dual enrollees. Dually enrolled beneficiaries also were less likely to receive hospice services (55%) compared with non-dual enrollees (69.2%). Dual enrollees additionally were more likely to die in nursing homes (44%) and in hospitals or emergency departments (10.1%) compared with non-dual enrollees (16.6% and 15.5%, respectively). 

The study also found that, compared with their non-dually enrolled counterparts, dual enrollees were more prevalent in states with lower regulatory stringency for staffing and training (53.3% versus 52.5%), admission and retention (48.6% versus 42.4%) and dementia care (56.7% versus 52.5%), but not for medication management (56.2% versus 57.9%).

State regulations

Just more than 20% of assisted living residents are eligible for Medicaid. But as states “rebalance” long-term care from nursing homes to home- and community-based services, more assisted living residents will rely on the federal–state program to pay for personal and supportive care services, they authors said. With variability in the “generosity” of state Medicaid payments to assisted living communities, they added, disparities in care for Medicaid-eligible residents can be affected compared with private-pay residents.

“As new assisted living models have emerged and residents’ care needs have changed, state regulations have not kept pace; outdated policies often have been retained,” the study reads. 

Differences in where residents died were persistent between white and Black residents, but they were less important than differences by dual enrollment status, the authors said. Prior studies reported that more Black residents live in assisted living communities with a high proportion of dual enrolled residents, which tend to have fewer resources to maintain end-of-life care in place.

“Although our findings are encouraging, the significant variations by dual enrollment status, as well as by assisted living-level and state-level factors, suggest room and need for improvement,” the study reads. “Although Medicaid pays for personal care for assisted living residents who are dual enrollees, its generosity is also highly variable and might not be enough to enable them to stay in assisted living until death.”