Live hospice discharge: Experiences of families, and hospice staff

A mixed‐methods evaluation of home‐based primary care in dementia within an integrated system

“…47 Although HBPC is intended to provide continuity and alleviate the burdensome transition of patients discharged alive from hospice to unprepared primary care providers, families' distress over the loss of hospice supportive services is significant. 48…”

“…Hospice‐initiated live discharges overall in the United States were 8.5% in 2019 46 but can be as high as 12% for conditions with an unpredictable trajectory like dementia 47 . Although HBPC is intended to provide continuity and alleviate the burdensome transition of patients discharged alive from hospice to unprepared primary care providers, families' distress over the loss of hospice supportive services is significant 48 …”

Live Discharge of Hospice Patients with Alzheimer’s Disease and Related Dementias: A Systematic Review

“…The vast majority of reviewed studies addressed the prevalence of and/or factors associated with live discharge among hospice patients with ADRD. Most 15,17,18,[21][22][23][24] employed quantitative methods and involved secondary data analyses. One 15 employed qualitative methods and involved primary data collection and analysis.…”

“…First, while death remains a much more common reason for hospice exit than live discharge, a diagnosis of ADRD is consistently found to increase the risk of live discharge, and hospice patients with ADRD typically comprise a larger proportion of live discharges than do patients with other diagnoses. 15,21,22 Receipt of hospice care in a home setting (ie, private residence) rather than a nursing home or other facility is also fairly consistently identified as a risk factor for live discharge, 17,18,24 though little to no data exist in these studies to explain this finding beyond higher functionality at time of enrollment for patients at home. 17 Less clear is the influence of race and ethnicity on hospice live discharge.…”

“…Generally speaking, live discharges were described as distressing, confusing, and associated with numerous losses-both practical and relational-for patients and their families. [19][20][21] Clayton et al 21 studied hospice staff members in addition to patients' families, finding live discharges to be upsetting for both groups of individuals. Johnson et al 24 analyzed data on patient experiences after live discharge, finding that approximately 75% of the patients in their study who were discharged from hospice due to condition stabilization were still alive 1 year later.…”