Abstract

Most prefer to die at home, but the Medicare Hospice Benefit does not cover custodial care, making it difficult for terminally ill patients with housing insecurity and/or caregiver instability to access hospice care at home. To examine the characteristics of patients who received end-of-life care in community-run, residential care homes (RCHs) operating under the social model hospice. A retrospective chart review of 500 residents who were admitted to one of three RCHs in Upstate New York over a 15-year period (2004-2019). Patients served by the RCHs included 318 (63.6%) women and 182 (36.4%) men aged 34-101 (M = 77.8). The majority (94.9%) were Caucasian and most had cancer diagnoses (71.6%). Prior to admission, most (93%) patients resided in a private residence, and nearly half (47%) lived alone, but most (81.7%) had full- or part-time caregivers. Nearly all patients were admitted either directly from a hospital (47.5%) or private home (47.2%). Over half (52%) were admitted to RCHs within a month of hospice enrollment, and 20.1% enrolled concurrent with admission. While the average length of stay was 21days, 50% died within 10days of admission. Community-run RCHs represent a unique approach for improving access to hospice home care for patients with home insecurity and/or caregiver instability, yet most patients had prior caregiver coverage and were admitted from a hospital or home setting, suggesting there is a need for community care settings for patients unable to remain at home in the final weeks or days prior to death.

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