Is there no place like home? Caregivers recall reasons for and experience upon transfer from home hospice to inpatient facilities

Objective: To describe caregivers' reasons for transfer from home hospice to inpatient facilities, preferences for site of care and death, and their experiences during these transfers. Design: Retrospective qualitative analysis of interviews with caregivers of deceased hospice patients who had undergone transfer. Setting: A university-affiliated community hospice provider. Subjects: Caregivers of deceased hospice patients who transferred to an acute care hospital, a freestanding inpatient hospice facility, or a nursing home while enrolled in hospice and died between January 2003 and February 2004. Measurements: A semistructured interview protocol was developed and used for all interviews. Interviews were coded for reasons for transfer, preferences for site of care and death, and experience upon transfer using a grounded theory approach. Results: Patients transferred because of an acute medical event, an uncontrolled symptom, imminent death, or inability to provide needed care safely at home. Although all caregivers expressed a strong preference for care at home, other concerns such as pain and symptom control, safety, and quality and quantity of life became more important with time. We found significant variation in specific preferences regarding care and site of death. Satisfaction with care at the transfer facilities was determined by clarifying goals of care, following treatment preferences, providing personalized care, and the patient's environment. Conclusions: Hospice patients usually transfer to facilities to accomplish goals consistent with good end-of-life care. We can improve their experience by treating patients and their caregivers as unique individuals, exploring and respecting treatment preferences, and creating a pleasant physical environment.