The experience of transition from hospital to home hospice: Unexpected disruption

Little is known about the transition between hospital dismissal and onset of hospice services from the patient/family perspective. The specific aim of this phenomenological study was to describe the lived experience of patients and families transitioning from hospital to home hospice care. Nineteen patient and family units transitioning from hospital to home hospice care participated in this study. They photographed objects, people, and events during the hours or day(s) of this transition. Semistructured interviews occurred as soon as possible following the first home hospice visit. Data collection and analysis were concurrent, using validated transcripts and field notes. Patients and families experienced unexpected disruption during this transition, because of lack of clarity regarding hospice, their scramble to get ready, and a sense of open house once they arrived home. In this study, the transition experience extended beyond initiation of hospice care, with uncertainty about what hospice care would mean and disruptions in the preconceived expectations about hospice. Health professionals define the transition period as an "event," and the patients/families experience it as a "process." Implications for practice, education, and research are provided.