The Experience of Transition from Hospital To Home Hospice: Unexpected Disruption (768)

Abstract

1.Describe the lived experience of patients and families transitioning from hospital to home hospice care in the Midwest.2.Explore the feasibility of qualitative research methods and photography in a hospice setting. Little is known about the complex and unique challenges associated with 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. 19 patient and family units transitioning from hospital to home hospice care in the Midwest participated in this study. They photographed objects, people, and events during the hours or day(s) of this transition. Semi-structured interviews occurred usually one day after the first home visit by hospice personnel. Data collection and analysis were concurrent, using validated transcripts and field notes, coded with NVivo software. Patients and families experienced Unexpected Disruption during the transition from hospital to home hospice, due to lack of clarity regarding hospice, their scramble to get ready, and issues related to the sense of “open house” once they arrived home. Their scramble to get ready included the procurement and placement of a hospital bed in the home if needed, obtaining medications and finalizing the medication regimen. Participant-generated photographs highlighted and supported the study themes. In this study, most families were uncertain about what hospice care would entail. There were disruptions in their lives at home and in their preconceived expectations about hospice. Additionally, the full transition experience may extend beyond the initiation of hospice care.