Presenter: Shelby-Jade Murdock, College of Social and Behavioral Sciences, Sociology
Authors: Shelby-Jade Murdock, Evan Sangster, Madeleine Sorenson, Rebecca Utz, Margaret Clayton, Katherine Supiano
Faculty Advisor: Rebecca Utz, College of Social and Behavioral Sciences, Sociology
Institution: University of Utah
Hospice is a form of specialized, team-delivered health care at the EOL that focuses on palliative, rather than curative care. Most hospice patients are discharged from hospice care upon death, but some are discharged alive, either voluntarily by choosing to end hospice care (e.g., to pursue experimental treatment through clinical trial) or involuntarily by failing to meet the continued standard for participation. Hospice care is only available to persons who are within the last 6 months of life. Some patients outlive their hospice eligibility and experience “Live-Discharge” (LD). Involuntarily LD can have detrimental impacts on the families, patients, and the health care team, as needed and desired palliative care is withdrawn upon discharge despite the patient still being in a terminal state. The number of involuntary live-discharges has increased over the years. This study explores the consequences of LD, with a particular attention to how the experience of LD may differ based on disease type. Diseases such as Cancer have a predictable EOL trajectory, whereas other conditions have more protracted and complicated EOL trajectories that are less predictable. Thus, some have argued that some populations, such as those with dementia and Alzheimer's disease, are at a greater risk of live hospice discharge, than others. Using interview and focus group data, along with a review of admissions data from a large hospice provider in the Western US, I document the lived experiences of families and providers as patients were involuntarily discharged from hospice because they no longer met the eligibility criteria of 6 months of remaining life expectancy. This research is important, as it could potentially inform future reforms to the hospice eligibility standards that are more in line and compatible with the EOL experiences of terminal patients, regardless of what type of disease they may have.