"Time Consuming -but Time Well Spent": Hepatologists' Experiences with Delivering Palliative Care to Patients with End-Stage Liver Disease and Their Caregivers

ABSTRACT

Background: Palliative care (PC) is an integral part of managing patients with chronic illness and high symptom burden including end-stage liver disease (ESLD). Given the deficit in PC workforce, we trained Hepatologists with primary PC skills as a part of a comparative effectiveness trial (NCT03540771). This study explored the experiences of hepatologists trained to provide PC to patients with ESLD and their caregivers. Method(s) We conducted a qualitative interview study within the context of Pal-Liver, a PCORI-funded, 18-institution cluster-randomized comparative effectiveness trial of PC delivered by hepatologists (10 sites) vs PC specialist (8 sites) to ESLD patients and caregivers. Hepatologists completed a 12-week training course to develop skills in delivering primary PC for ESLD patients. Trained interviewers used a semi-structured guide to interview hepatologists (n=15) and PC specialists (n=15) to explore overall experiences in providing ESLD care, pre-and post-study challenges and benefits, and for hepatologists, experiences with training and providing primary palliative care. Phone interviews were digitally-recorded, transcribed verbatim, coded, and analyzed aided by NVIVO 12 software. Using a consensus-driven code book manifest and latent themes emerged. Here we report preliminary analysis of hepatologists' perspectives. Result(s) Hepatologists (n=15) 70% female;77% white, mean age 48 years from 8 hepatologist-provided palliative care institutions reported themes of 1) primary PC training beneficial;2) time consuming but "time well spent" with additional primary PC integrated within routine ESLD care;3) ESLD care boundaries vs overlap Who does what & when?;4) Covid-19 impact challenges and opportunities;5) increased focus on caregivers' needs;6) patient reported outcome (PROs) measures improved communication about prognosis and tailoring PC interventions for physical and emotional symptoms, and 7) need for more case discussions and practical strategies. Conclusion(s) Training on primary PC skills assisted hepatologists to provide additional support to patients and increased their realization of caregivers' needs. Boundaries between primary and specialist PC for patients with ESLD are not well demarcated. Hepatologists found PROs useful in tailoring PC interventions. Future analysis will include comparisons between hepatology and specialist delivered PC to inform a pragmatic approach. (Figure Presented).