Patient and Family Caregiver Perspectives on Palliative Care Needs in End-Stage Liver Disease: A Qualitative Study (S855)

Abstract

1.Identify the specific impact ESLD has on patients and their family caregivers from their perspectives.2.Identify the stated needs of patients and family caregivers in ESLD care from their perspectives.3.Identify the barriers to integrating PC into care of patients with ESLD from patient and caregiver perspectives. Palliative Care (PC) is underutilized in persons with end-stage liver disease (ESLD) and little data exists on patient and family caregivers’ perspectives on PC needs and how PC can be integrated into ESLD care. Identify ESLD patient and family caregiver perspectives on challenges of living with ESLD, potential PC needs, and barriers to integrating PC. Semi-structured one-on-one interviews were conducted with purposively-sampled patients with ESLD and their caregivers at a tertiary care academic medical center. Patients and caregivers were asked about: 1) challenges of living with ESLD, 2) their unmet needs, and 3) their understanding and perceptions of PC and hospice, including accessing these services. Interviews were digitally recorded and transcribed. Transcripts were entered into NVivo software and analyzed using thematic analysis. Patients (n=7) had a mean age of 67 and were mostly female and white (70%) with ESLD due to alcohol (43%), hepatitis C (57%), non-alcoholic steatohepatitis (29%), and with concurrent hepatocellular carcinoma (43%). Most caregivers were female and white (83%), and were the patient’s spouse/partner (83%). Patients and caregivers perceived that ESLD challenges occurred in all four quality of life (QOL) domains (physical, emotional, social, and spiritual). Participants’ needs included better communication with providers, emotional support, caregiver support, and practical needs. A majority of patients and caregivers had a lack of understanding of PC. Thematic analysis identified a variety of unmet patient and family caregiver needs in ESLD that could be addressed by PC services. However, a major barrier is a lack of understanding of PC services.