How is advance care planning experienced by patients with decompensated cirrhosis and clinicians at liver transplant centers?
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.
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.
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.
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.
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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Patel AA, Ryan GW, Tisnado D, et al. Deficits in Advance Care Planning for Patients With Decompensated Cirrhosis at Liver Transplant Centers. JAMA Intern Med. 2021;181(5):652–660. doi:10.1001/jamainternmed.2021.0152
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