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Original Investigation
March 15, 2021

Deficits in Advance Care Planning for Patients With Decompensated Cirrhosis at Liver Transplant Centers

Author Affiliations
  • 1Vatche and Tamar Manoukian Division of Digestive Diseases, Department of Medicine, David Geffen School of Medicine at University of California, Los Angeles (UCLA), Los Angeles
  • 2Department of Medicine, Veterans Affairs Greater Los Angeles Healthcare System, Los Angeles, California
  • 3Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California
  • 4Department of Public Health, California State University, Fullerton
  • 5School of Social Welfare, University of California, Berkeley, Berkeley
  • 6Department of Health Policy and Management, UCLA Fielding School of Public Health
  • 7Division of General Internal Medicine and Health Services Research, Department of Medicine, David Geffen School of Medicine at UCLA
  • 8Division of Liver Transplantation, Department of Surgery, David Geffen School of Medicine at UCLA
  • 9Division of Gastrointestinal and Liver Diseases, Department of Medicine, Keck School of Medicine of University of Southern California, Los Angeles
  • 10Karsh Division of Gastroenterology and Comprehensive Transplant Center, Cedars Sinai Medical Center, Los Angeles, California
  • 11RAND Health Care, Santa Monica, California
JAMA Intern Med. 2021;181(5):652-660. doi:10.1001/jamainternmed.2021.0152
Key Points

Question  How is advance care planning experienced by patients with decompensated cirrhosis and clinicians at liver transplant centers?

Findings  In this qualitative study of 46 transplant center clinicians and 42 patients with decompensated cirrhosis, semistructured interviews found that despite patient interest in discussing end-of-life issues, few such conversations occurred between patients and clinicians. Conversations focused on the need for liver transplant rather than on end-of-life decision-making, with which surrogate decision makers often struggled.

Meaning  Results of this study suggest that substantial deficits exist in advance care planning for patients with decompensated cirrhosis at transplant centers; these gaps may help explain the suboptimal end-of-life care in this population.


Importance  The burden of end-of-life care for patients with cirrhosis is increasing in the US, and most of these patients, many of whom are not candidates for liver transplant, die in institutions receiving aggressive care. Advance care planning (ACP) has been associated with improved end-of-life outcomes for patients with other chronic illnesses, but it has not been well-characterized in patients with decompensated cirrhosis.

Objective  To describe the experience of ACP in patients with decompensated cirrhosis at liver transplant centers.

Design, Setting, and Participants  For this multicenter qualitative study, face-to-face semistructured interviews were conducted between July 1, 2017, and May 30, 2018, with clinicians and patients with decompensated cirrhosis at 3 high-volume transplant centers in California. Patient participants were adults and had a diagnosis of cirrhosis, at least 1 portal hypertension–related complication, and current or previous Model for End-Stage Liver Disease with sodium score of 15 or higher. Clinician participants were health care professionals who provided care during the illness trajectory.

Main Outcomes and Measures  Experiences with ACP reported by patients and clinicians. Participants were asked about the context, behaviors, thoughts, and decisions concerning elements of ACP, such as prognosis, health care preferences, values and goals, surrogate decision-making, and documentation.

Results  The study included 42 patients (mean [SD] age, 58.2 [11.2] years; 28 men [67%]) and 46 clinicians (13 hepatologists [28%], 11 transplant coordinators [24%], 9 hepatobiliary surgeons [20%], 6 social workers [13%], 5 hepatology nurse practitioners [11%], and 2 critical care physicians [4%]). Five themes that represent the experiences of ACP were identified: (1) most patient consideration of values, goals, and preferences occurred outside outpatient visits; (2) optimistic attitudes from transplant teams hindered the discussions about dying; (3) clinicians primarily discussed death as a strategy for encouraging behavioral change; (4) transplant teams avoided discussing nonaggressive treatment options with patients; and (5) surrogate decision makers were unprepared for end-of-life decision-making.

Conclusions and Relevance  This study found that, despite a guarded prognosis, patients with decompensated cirrhosis had inadequate ACP throughout the trajectory of illness until the end of life. This finding may explain excessively aggressive life-sustaining treatment that patients receive at the end of life.

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