Paulson-Blom, Amanda L.

Background Approximately 20% of hospice patients in the US are discharged alive, often due to Medicare regulations. Such discharges are frequently perceived by caregivers as abandonment or expulsion, especially when they occur without follow-up or planning for care transition. Methods This study explored caregiver experiences with live hospice discharge through 2 narrative interviews and institutional data from a Midwest medical center (January 2020 through December 2022). Caregiver stories were analyzed thematically to identify emotional and logistical challenges. Retrospective patient data were also reviewed to provide descriptive statistics on patient volume. Results Of 1556 hospice patients discharged, 107 (6.9%) were discharged alive, with a mean length of stay of 205 days—substantially longer than that for the general hospice population. Most patients were women who were diagnosed with cerebrovascular or neurologic conditions and discharged from skilled-care facilities. One of the caregivers described discharge as distressing and poorly coordinated; the other reported a positive experience shaped by prior knowledge and financial resources. Both emphasized the importance of clear communication, care planning (eg, to avoid loss of durable medical equipment), and interdisciplinary support. The caregiver’s financial stability likely influenced discharge decisions and preparedness. Conclusions Live hospice discharge can cause emotional and practical disruption, especially when not accompanied by a care transition plan or access to durable medical equipment. This study highlights the need for team-based communication, sensitivity in language, and continued support. Engaging all members of the interdisciplinary team and ensuring access to essential resources may improve caregiver confidence and continuity of care.