Hospice Transitions From the Perspective of the Caregiver: A Qualitative Study and Development of a Preliminary Hospice Transition Checklist

Abstract

Background: Relative to curative and traditional care delivery, hospice care has been associated with superior end of life (EOL) outcomes for both patient and caregiver. Still, comprehensive orientation and caregiver preparation for the transition to hospice is variable and often inadequate. From the perspective of the caregiver, it is unclear what information would better prepare them to support the transition of their loved one to hospice. Objectives: Our two sequential objectives were: 1) Explore caregivers’ experiences and perceptions on the transition of their loved one to hospice; and 2) Develop a preliminary checklist of considerations for a successful transition. Design: We conducted semi-structured interviews and used a descriptive inductive/deductive thematic analysis to identify themes. Subjects: 19 adult caregivers of patients across the United States who had enrolled in hospice and died in the year prior (January – December 2019). Measurements: An interview guide was iteratively developed based on prior literature and expanded through collaborative coding and group discussion. Results: Four key themes for inclusion in our framework emerged: hospice intake, preparedness, burden of care and hospice resources. Conclusions: Focusing on elements of our preliminary checklist, such as educating families on goals of hospice or offering opportunities for respite care, into the orientation procedures may be opportunities to improve satisfaction with the transition and the entirety of the hospice experience. Future directions include testing the effectiveness of the checklist and adapting for expanded poputlations.