Events Leading to Hospital-Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers' Perspectives

Background: Approximately 25% of hospice disenrollments in the United States occur as the result of hospitalization, which can lead to burdensome transitions and undesired care. Informal caregivers (e.g., spouses, children) play a critical role in caring for patients on home hospice. Research examining hospital-related disenrollment among these patients is limited. Objective: To understand the events surrounding the hospitalization of patients discharged from home hospice through the perspective of their informal caregivers. Design: Thirty-eight semistructured phone interviews with caregivers were conducted, and data regarding the events leading to hospitalization and hospice disenrollment were collected. Study data were analyzed by using qualitative methods. Setting/Subjects: Subjects included caregivers of 38 patients who received services from one not-for-profit home hospice organization in New York City. Participants were English speaking only. Measurements: Caregiver recordings were transcribed and analyzed by using content analysis. Results: Content analysis revealed four major themes contributing to hospitalization: (1) distressing/difficult-to-witness signs and symptoms, (2) needing palliative interventions not deliverable in the home setting, (3) preference to be cared for by nonhospice physicians or at a local hospital, and (4) caregivers not comfortable with the death of their care recipient at home. Over half of all caregivers called 911 before calling hospice. Conclusions: Our study provides insight into the events leading to hospitalization of home hospice patients from the caregivers' perspective. Further research is needed to quantify the drivers of hospitalization and to develop interventions that reduce utilization, while improving care for home hospice patients and their caregivers.