National Trends in Types of Hospice Disenrollment Among Older Adults With Dementia, 2012-2019

Older adults with dementia in hospice have a higher risk of disenrollment ("live discharge"), which is a often a disruptive care transition for patients. High hospice disenrollment among older adults with dementia has drawn federal scrutiny related to Medicare Hospice Benefit integrity concerns. We examined national trends in hospice disenrollment, 2012-2019, among older adults with dementia by agency-reported reason and hospice ownership, considering two federal policies implemented in that period: 2014 Improving Medicare Post-Acute Care Transformation (IMPACT) Act and 2016 Hospice Payment Reform.

Serial cross-sectional study of all Medicare hospice enrollees 65+ admitted with dementia as their qualifying terminal illness. Outcomes included hospice disenrollment overall and by agency-reported reason (extended prognosis, transfer to another hospice, moves out of service area, for cause, and revocation). We estimated intercepts in September 2012 and December 2019 and monthly percentage change before and after federal policy implementation.

Among 1,436,018 older adults with dementia in hospice, overall disenrollment decreased slightly from 24.0% (95% CI: 23.6%, 24.4%) in 2012 to 23.2% (95% CI: 22.8%, 23.6%) in 2019. Disenrollment due to extended prognosis decreased from 10.9% (95% CI: 10.7%, 11.2%) to 9.7% (95% CI: 9.3%, 9.8%), with all decreases occurring after federal policy implementation. Transfers and moves both increased slightly but steadily across the study period (transfers 2.6%-4.0%; moves 0.7%-1.5%). For-profit hospices had consistently higher overall disenrollment rates than nonprofits, with slightly widening differences in transfers, moves, and revocations.

From 2012 to 2019, agency-reported reasons for hospice disenrollment among older adults with dementia shifted modestly. Although disenrollment due to extended prognosis declined after federal policy implementation, overall rates changed little because transfers and moves increased-particularly among for-profit hospices. Our findings show the importance of disaggregating disenrollment by type. Future research should examine how agency-reported disenrollment reasons reflect underlying circumstances.