Prospective exploration of transitions in settings within hospice

One of the central achievement of the American hospice movement was to shift the place of death from hospitals to patients\u27 homes, where most Americans report they would prefer to die. However, recently, there has been a dramatic increase in inpatient hospice deaths. Decisions about where a hospice patient receives care and when to transfer between settings involve the patient, family caregivers, and the hospice interdisciplinary team (IDT). Using ethnographic methods, this study described the beliefs, practices, and experiences of patients, caregivers and interdisciplinary team members in home and inpatient hospice, particularly during transitions from home to inpatient hospice. Observations and 38 semi-structured interviews were conducted in a large, not-for-profit hospice agency in the Northeast. Fieldnotes, memos and transcripts were analyzed using constant comparative techniques. Analysis of transitions from home to inpatient hospice revealed three processes in home hospice: development of a plan for decline, triggers signaling increased needs for care and navigation through phases of increased care. Further analysis of IDT interview data revealed home hospice clinicians were focused onbalancing safety with preferences, addressing the critical role of the family caregiver, and being a guest in the patient\u27s home. In contrast, the inpatient hospice team saw their role as being a symptom management resource, allowing for the caregiver to just be family, and being immediately available to meet patient and family needs. Clinical implications of the findings include a careful evaluation of professional and family caregiver roles in both home and inpatient hospice as well as the recognition of triggers that can threaten patient and family preferences for the location and goals of care. Findings from this dissertation also suggest greater attention to setting specific outcomes in hospice and consideration of patterns in phases of increased care in hospice. Future research in these areas could transform home hospice practices to better meet patient expectations and provide enhanced continuity along the hospice continuum of care