Improving Inpatient Respite Care: A Collaboration with ALS Patients and Caregivers.

1. Understand the inpatient respite care experience via lessons learned from interviews with ALS patients and caregivers including perceptions, barriers to use, and how insights may apply to inpatient respite care for other patient populations. 2. Discuss the collaborative development of a patient-centered inpatient respite care admission checklist, designed to enhance communication between patients, caregivers and the inpatient interdisciplinary team. Providing inpatient respite care for ALS patients is uniquely challenging due to specialized equipment and skills which may be unfamiliar to inpatient providers. An admission checklist was collaboratively developed with ALS patients, caregivers and an interdisciplinary hospice team to address these challenges. This tool may benefit patients with neurodegenerative diseases and communication challenges, improving the quality of inpatient respite care. Provision of inpatient hospice (IPU) respite care for patients with amyotrophic lateral sclerosis (ALS) presents unique challenges. As ALS progresses, care requires specialized equipment and advanced caregiver skills, placing a substantial burden on caregivers. Technologies such as eye-tracking communication devices and portable ventilators, often integral for ALS patients, are rarely used in the IPU setting. The gap between ALS patient/caregiver experiences and expectations, and that of IPU interdisciplinary teams, can present significant obstacles to high-quality care for this population which could greatly benefit from respite services. We conducted a quality improvement project to improve inpatient respite care for ALS patients. Initial interviews with the caregiver of the patient who inspired this project, and their bedside nurse, pinpointed communication breakdowns as the main root cause of a difficult IPU respite experience and identified the intake process as a key improvement opportunity. An interview guide was developed to characterize inpatient respite care perceptions, experiences, and barriers to use. Semi-structured, in-depth interviews were conducted with 4 patient-caregiver dyads and 2 caregivers of patients who had passed, and field notes taken. Themes identified within and between interviews guided an interdisciplinary hospice team in developing an inpatient admission checklist to align patient and caregiver expectations with those of staff. The checklist was iteratively refined based on feedback from patients, caregivers, and staff. An IPU admission checklist was collaboratively developed by an interdisciplinary hospice team, ALS patients and their caregivers. This checklist addresses unique pre-admission logistics for ALS patients including medical equipment, home routine integration, and interventions for addressing common sources of patient distress/discomfort. A patient-centered IPU respite admission checklist can help align expectations between patients with complex medical needs, caregivers, and respite care providers. It may benefit not only ALS patients, but also those with other neurodegenerative diseases and communication challenges. Communication / Interdisciplinary Teamwork / Professionalism [ABSTRACT FROM AUTHOR]