Hospice care has been shown to improve end-of-life outcomes for adults with chronic illness,1-4 yet with eligibility limited to a six-month prognosis, the hospice system is not structured to meet longer-term needs.5 Many adult patients stabilize or have a change in terminal prognosis, leading to a ?live discharge.? 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).6 With increasing hospice enrollments,6 live discharges for adult patients are also expected to increase.7 Our proposed 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.?13 We propose a six-month longitudinal survey to 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.
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. Participants (adult patients and their primary caregivers) will be referred from hospice agencies affiliated with the Greater St. Louis Hospice Organization, a coalition of independent agencies across the metropolitan area who meet monthly by discipline (administrators, SW, nurses, and physicians) to foster communication and collaboration among hospice programs. Approximately 70 dyads will be asked to: (a) complete a telephone survey at discharge and at 3- and 6-months post-discharge and (b) participate in an audio-recorded interview during the 3-month call about their experiences of service coordination (both while on hospice and following discharge) and potential impact to quality of life. Our findings will (1) inform future work on the relationship between service use and outcomes of live discharge, (2) inform development of standards of care for live discharges, which can then be evaluated for effectiveness and impact on patient and caregiver outcomes, and (3) provide potential policy implications for hospice eligibility requirements.
There are an increasing number of patients who months after admittance to hospice, experience a ?live discharge? from services due to a stabilization in their condition, losing access to important services and resources. Little is known about what happens to these patients post hospice discharge, what their primary care needs are, or how patients and their primary caregivers attempt to meet those needs. This proposed study aims to: (1) 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) determine service utilization patterns (where patients receive care) and the quality and continuity of care transitions following a live discharge; and (3) 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.
