Arpan Arun Patel1,2, Gery W Ryan3, Diana Tisnado4, Emmeline Chuang5,6, Anne M Walling2,7, Sammy Saab1,8, Saro Khemichian9, Vinay Sundaram10, Robert H Brook7,11, Neil S Wenger7. 1. Vatche and Tamar Manoukian Division of Digestive Diseases, Department of Medicine, David Geffen School of Medicine at University of California, Los Angeles (UCLA), Los Angeles. 2. Department of Medicine, Veterans Affairs Greater Los Angeles Healthcare System, Los Angeles, California. 3. Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California. 4. Department of Public Health, California State University, Fullerton. 5. School of Social Welfare, University of California, Berkeley, Berkeley. 6. Department of Health Policy and Management, UCLA Fielding School of Public Health. 7. Division of General Internal Medicine and Health Services Research, Department of Medicine, David Geffen School of Medicine at UCLA. 8. Division of Liver Transplantation, Department of Surgery, David Geffen School of Medicine at UCLA. 9. Division of Gastrointestinal and Liver Diseases, Department of Medicine, Keck School of Medicine of University of Southern California, Los Angeles. 10. Karsh Division of Gastroenterology and Comprehensive Transplant Center, Cedars Sinai Medical Center, Los Angeles, California. 11. RAND Health Care, Santa Monica, California.
Abstract
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.
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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Authors: Sasha Storaasli; Shunichi Nakagawa; Jonathan P Singer; David A Fedoronko; Yuan Zhang; Demetra Tsapepas; Maylin E Rincon; Jenna Scheffert; Luke Benvenuto; Selim M Arcasoy Journal: Transplant Proc Date: 2022-07-11 Impact factor: 1.014
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