A national study of disenrollment from hospice among people with dementia.

BACKGROUND: People with dementia (PWD) are at high risk for hospice disenrollment, yet little is known about patterns of disenrollment among the growing number of hospice enrollees with dementia.

DESIGN: Retrospective, observational cohort study of 100% Medicare beneficiaries with dementia aged 65 and older enrolled in the Medicare Hospice Benefit between July 2012 and December 2017. Outcome measures included hospice-initiated disenrollment for patients whose rate of decline ceased to meet the Medicare hospice eligibility guideline of "expected death within 6 months" (extended prognosis) and patient-initiated disenrollment (revocation). Hospice, regional, and patient risk factors and variation were assessed with multilevel mixed-effects logistic regression models.

RESULTS: Among 867,695 hospice enrollees with dementia, 70,945 (8.2%) were disenrolled due to extended prognosis and 43,133 (5.0%) revoked within 1-year of their index admission. There was substantial variation in hospice provider disenrollment due to extended prognosis (10th-90th percentile 4.5%-14.6%, adjusted median odds ratio (MOR) 1.86, 95% confidence interval (CI) 1.82, 1.91) and revocation (10th-90th percentile 2.5%-10.1%, MOR 2.09, 95% CI 2.03, 2.14). Among hospital referral regions (HRR), there was more variation in revocation (10th-90th percentile 3.5%-7.6%, MOR 1.4, 95% CI 1.34, 1.47) than extended prognosis (10th-90th percentile 7.0%-9.5%, MOR 1.23, 95% CI 1.18, 1.27), with much higher revocation rates noted in HRRs located in the Southeast and Southern California. A number of patient and hospice characteristics were associated with higher odds of both types of disenrollment (younger age, female sex, minoritized race and ethnicity, Medicaid dual eligibility, Medicare Part C enrollment), while some were associated with revocation only (more comorbidities, newer, smaller, and for-profit hospices).

CONCLUSIONS: In this nationally representative study of hospice enrollees with dementia, hospice disenrollment varied by type of hospice, geographic region, and patient characteristics including age, sex, race, and ethnicity. These findings raise important questions about whether and how the Medicare Hospice Benefit could be adapted to reduce disparities and better support PWD.