RPD202 - Patient, Caregiver, and Clinician Experiences in the PAL LIVER Trial: A 360-Degree View of Palliative Care in ESLD

Key Message : Introducing palliative care (PC) into end-stage liver disease care is valued by patients, caregivers, and clinicians. While time-intensive, hepatologists reported delivering PC rewarding and practice-enhancing. The insights from this multicenter cluster RCT (19 centers) underscore the need for implementation strategies that address time and training requirements for sustainable, high-quality PC.

Abstract:

Background:
Palliative care (PC) addresses critical needs for those facing end-stage liver disease (ESLD) but remains underutilized. The PAL-LIVER cluster randomized comparative effectiveness trial compared PC delivered by PC-trained hepatologists to PC specialists in improving quality of life. This nested qualitative study explored the experiences of patients, caregivers, and clinicians with PC in the context of ESLD.

Methods:
We used semi-structured telephone interviews, conducted by trained interviewers, to explore the experiences of patients, caregivers, and clinicians with the introduction of PC into ESLD care. Interviews were recorded, transcribed verbatim, and analyzed using the constant comparative method.

Results:
Participants included 62 patients (mean age 60.3; 27% female), 43 caregivers (mean age 61.2; 79% female), 15 PC specialists (93.3% female; mean age 49.8), and 17 hepatologists (70% female; mean age 48).

Key themes from patients and caregivers:
1. PC was highly valued in ESLD care.
2. PC facilitated holistic, compassionate, and accessible care.
3. Communication was honest and bi-directional.
4. Mental health and caregiver support were prominent.
5. Advance care planning discussions were challenging but welcomed.
6. Study participation was not burdensome.
Few differences were noted related to prognosis discussions: hepatologist-led PC felt liver-specific, while PC specialist-led conversations were more general.

PC specialists emphasized:
• Their role in improving communication with hepatology teams,
• Misperceptions about PC among patients,
• Need for better training for ESLD.

Hepatologists noted:
• Improved communication and clinical practice,
• PC Training was helpful but could benefit from more practical applications,
• Caregiver support was a new and important focus,
• Delivering PC was time-intensive but valuable.

Conclusion:
Patients, caregivers, and clinicians valued the introduction of PC into ESLD care. Hepatologists felt that delivering PC was time intensive but rewarding and enhanced their practice. Implementation efforts should account for the time and training required to deliver PC.

References: 1. Rogal, S. S., Hansen, L., Patel, A., Ufere, N. N., Verma, M., Woodrell, C. D., & Kanwal, F. (2022). AASLD Practice Guidance: Palliative care and symptom‐based management in decompensated cirrhosis. Hepatology, 76(3), 819-853.
2. Verma, M., Kosinski, A. S., Volk, M. L., Taddei, T., Ramchandran, K., Bakitas, M., ... & Navarro, V. (2019). Introducing palliative care within the treatment of end-stage liver disease: the study protocol of a cluster randomized controlled trial. Journal of palliative medicine, 22(1_suppl), S-34. This is the study protocol.
3. Bakitas, M., Hoppmann, N., Stockdill, M., Gazaway, S., Armstrong, M., Khalidi, S., ... & Verma, M. (2025). Developing palliative care interventions in liver disease using formative and summative qualitative evaluation. Hepatology, 10-1097. This outlines the details of our qualitative study
4. Hoppmann, N., Bakitas, M., Stockdill, M., DeNofrio, J., Navarro, V., & Verma, M. (2025). Palliative Care for Advanced Liver Disease: Hepatology and Palliative Care Specialists Experiences. Journal of Pain and Symptom Management. This article provides details of clinician interviews.