Being discharged from hospice alive: The lived experience of patients and families

Background: Approximately 259,000 patients were discharged alive from U.S. hospices in 2010. There is a paucity of research describing the experiences of these individuals and their family members. Objective: The study objective was to explore the experiences of adults discharged from a hospice program due to decertification related to ineligibility or extended prognosis, from the perspective of the individual and his or her adult family members. Research questions were, How do participants perceive and describe (1) the experience of being discharged alive from hospice, and (2) their quality of life after a live hospice discharge? Methods: A transcendental phenomenological design guided this study. Purposive, snowball sampling was used to recruit 12 volunteers, aged 35-92 years, who had experienced live hospice discharge due to decertification. Data collection included open-ended interviews and journals. Results: Findings included two primary themes: suffering "AS..." and the paradox of hospice discharge. These primary themes were supported by 12 subthemes: abandonment, unanswered questions, loss of security, loneliness, uncertainty, anger and frustration, physical decline, bearing exhaustive witness, having and needing support, mixed feelings, not dying fast enough, and hospice equals life. Conclusion: Understanding this experience may enhance understanding and aid health care providers to anticipate the unique needs of the hospice population.