Specialties: Palliative Care, Hepatology

Keywords: Advance Care Planning, Decompensated Cirrhosis, Latino

Background: 

Patients with decompensated cirrhosis (DC) and providers at liver transplant (LT) centers report infrequent conversations about death until late in the disease course; however, little is known about how patients with DC describe factors that influence their advance care planning (ACP) experiences. Exploring these perspectives in Latino patients, who experience greater disparities in end-of-life, is particularly critical.

Objective: 

This project explores mediators affecting the ACP experiences of Latino patients with DC at LT centers.

Methods: 

We conducted face-to-face, audio-recorded, semi-structured interviews with 42 patients across three LT centers. Participants included patients listed for LT, undergoing evaluation, too early for transplant, not listed due to comorbidities, and not listed due to substance use or psychosocial issues. Of these 42 participants, 14 self-identified as Hispanic or Latino. Transcripts were analyzed using qualitative thematic analysis.

Results:

Three themes emerged:

1) Patient: Many patients had personal health experiences that facilitated interest in ACP.  Religion and culture also promoted a comforting framework for many patients to cope with their illness and concerns about dying.  Internal fears of death, on the other hand, delayed ACP discussions.

2) Patient-clinician: Patient often viewed ACP as less important when their clinicians did not bring up such discussions or when clinicians reported their health as stable.

3) Patient-family:  Family was an important motivation for bringing up ACP discussions when introduced in the context of easing emotional and financial burdens on family, or preventing unwanted end of life experiences.  Geographic proximity to family was crucial for supporting surrogate decision making, and emotional tensions between family members made ACP discussions challenging.   

Conclusions: Inviting dialogue about religion, cultural background, personal health experiences, emotional readiness, and family dynamics may facilitate more meaningful ACP conversations.