Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

Abstract

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the 'live' discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer's disease, who experienced a 'live' discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual's terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a 'live' discharge.

Race, Ethnicity, and Other Risks for Live Discharge Among Hospice Patients with Dementia

“…Live discharge from hospice is a burdensome and disruptive transition for PWD and their caregivers. Family members may need to resume caregiving responsibilities once hospice services cease and adjust to the idea their loved one is no longer considered “terminally” ill . In a sample of PWD age 65 and older with hospice stays of 7 to 180 days, our findings identify subsets of PWD most vulnerable to live discharge due to condition stabilization: African American and Hispanic patients, and those who receive home hospice care.…”

Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies

“…Some carers felt ‘cheated’ 28 because the person with dementia was not offered hospice until it was too late to consider or benefit from the care. For others who had accessed hospice, some later became overwhelmed when the person with dementia was discharged or ‘kicked out of hospice’ 28 despite being considered ‘terminal’ but ‘not dying fast enough’ 63 to qualify for hospice care. Thus, carers believed the provision and duration of hospice access was inadequate in dementia and some questioned the appropriateness of using an ‘end-of-life care’ model in dementia given its unpredictable disease trajectory.…”

“…We couldn't imagine that [hospice] would let us go'. (Carer) 63 4,28,39,59,62,63,89,96 Quotations are from study participants; the codebook containing the themes and sections from each study coded to the respective themes are available on requisition from corresponding author.…”

Using meta-ethnography to understand the care transition experience of people with dementia and their caregivers

“…The live hospice discharge was viewed both as a gift of more time and as an opportunity to reassess the caregiving role, “I don’t want my mother to pass away, but can I do this for 3 more years? Can I do this for 2 more years?” ( Wladkowski, 2016 , p. 57).…”

“…Being ready for the care transition: Starting to live a new life. In response to the care transition, a subset of caregivers experienced a sense of relief knowing their family member was being taken care of in a safe environment (Crawford et al, 2015;Digby et al, 2012;Hutchings et al, 2011;Kelsey et al, 2010;Kiwi et al, 2018;Wladkowski, 2016). Crawford et al (2015) talked about caregivers having to get used to a new life, and as one wife admitted, "You've got to be able to do things… I know he's being well looked after.…”