"Hospice care has been shown to improve end-of-life outcomes for adults with chronic illness, yet with eligibility limited to a six-month prognosis, the hospice system is not structured to meet longer-term needs. Many adult patients stabilize or have a change in terminal prognosis, leading to a ‘live discharge.’ Patients with dementia are more likely to experience a live discharge compared with other diagnoses, particularly after 6 months of care without presence of an acute event, indicating they are removed due to decertification. In 2017, 6.7% of all discharges from hospice were patients who were discharged alive due to no longer meeting eligibility requirements (i.e., nearly 90,000 patients annually). Patients with dementia are utilizing hospice at increasing rates and represent the fastest growing group of hospice users. With increasing hospice enrollments, live discharges for adult patients are also expected to increase.
Our study is guided by the tenets of “Triple Aim,” or the belief that “improving the US health system requires simultaneous pursuit of three aims: improving the experience of care, improving the health of populations, and reducing per capita costs of health care.” Using a six-month longitudinal survey, we will assess quality of life, healthcare utilization, and health status for adult patients and their primary caregiver experiencing a live discharge from hospice care due to decertification. This study is open for patients across diagnoses, including Alzheimer's Disease and Related Dementias (ADRD). Specific aims are 1) To evaluate outcomes of quality of life and caregiver well-being, healthcare utilization (e.g., number of hospitalizations, ER visits, care transitions), and health status (e.g., functional status, pain, death) at time of live discharge and following a live discharge; 2) To determine service utilization patterns (where patients receive care) and the quality and continuity of care transitions following a live discharge; and 3) To analyze perspectives on the experience of service coordination and potential impacts to quality of life for adult patients and their primary caregivers following a hospice live discharge.
Additionally, as a supplement study, caregivers of patients with ADRD diagnoses will enroll from the parent study with one additional qualitative interview. Our supplement study is informed by the ecological model of resilience for caregivers, which has been adapted for family caregivers of hospice patients with ADRD. This model conceptualizes caregivers’ social contexts as sources of potential ‘resilience resources’ that offer protection against harmful effects of caregiving stress. We propose a mixed method, cross-sectional study to assess the role of social context among ADRD caregivers following a live discharge from hospice. Specific aims are 1) To explore how family caregivers’ social context influences their service utilization patterns and experiences of care transitions following live discharge due to decertification of a hospice patient with ADRD; and 2) To conduct a preliminary evaluation of the relationships between perceived social support, loneliness, and social isolation and caregiver well-being, quality of care transitions, and continuity of care as reported by family caregivers immediately following live discharge due to decertification of a hospice patient with ADRD.
Participants will be asked to: (a) complete a telephone or video survey near hospice discharge and at 3- and 6-months post-discharge, and (b) participate in an audio-recorded interview."
patient who was discharged alive from hospice within the past month due to decertification, or no longer meeting eligibility criteria, and their primary caregiver