Hospice Use Among Medicare Beneficiaries With Parkinson Disease and Dementia With Lewy Bodies.

Abstract

Importance: Neurodegenerative disorders are now the most common reason that Medicare beneficiaries enroll in hospice for end-of-life care. People with all-cause dementia have high rates of suboptimal hospice use, but little is known about hospice use patterns in Lewy body disease, which includes both Parkinson disease (PD) and dementia with Lewy bodies (DLB).

Objective: To compare patient characteristics, hospice agency characteristics, and patterns of use for beneficiaries with PD and DLB vs Alzheimer disease (AD).

Design, setting, and participants: A retrospective cohort study including a 100% sample of national 2010-2020 calendar year Medicare data on hospice enrollees was performed. Data analysis was conducted from November 2023 to May 2024.

Exposures: A diagnosis of PD or DLB, compared with AD as the reference group.

Main outcomes and measures: Proportion of enrollees with short stays (<7 days), proportion with long stays (>180 days), proportion disenrolled for any reason before death, and disenrollment by type.

Results: Of 11 327 324 Medicare beneficiaries enrolled in hospice between 2010 and 2020 who met eligibility criteria (mean [SD] age, 85.2 [7.5] years; 781 763 [63.0%] female), there were 958 182 (8.4%) with a primary diagnosis of AD, 232 864 (2.1%) with PD, and 49 340 (0.4%) with DLB. People with PD were more likely to experience a long stay (odds ratio [OR], 1.15; 95% CI, 1.13-1.16) compared with AD, whereas the odds for those with DLB were not increased. However, people with either PD or DLB were less likely to be disenrolled for extended prognosis compared with AD (OR for DLB, 0.82; 95% CI, 0.79-0.85; OR for PD, 0.86; 95% CI, 0.85-0.88). People with PD were more likely to revoke hospice (OR, 1.29; 95% CI, 1.27-1.32) compared with AD.

Conclusions and relevance: In this cohort study of Medicare beneficiaries, hospice use patterns differed by dementia subtype. Higher likelihood of hospice revocation in PD raises important questions about unmet needs and highlights the need for more research around the experience of the end of life in this growing population.