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.
Department of Medicine, Veterans Affairs Greater Los Angeles Healthcare System, Los Angeles, California.
JAMA Intern Med. 2021 May 1;181(5):652-660. doi: 10.1001/jamainternmed.2021.0152.
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.
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.
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.
在美国，终末期肝病患者的临终关怀负担正在增加，其中大多数患者（许多患者不符合肝移植条件）在接受积极治疗的机构中死亡。预先护理计划（ACP）与其他慢性疾病患者的临终护理结局改善有关，但在失代偿性肝硬化患者中尚未得到充分描述。
描述肝移植中心失代偿性肝硬化患者的 ACP 体验。
设计、地点和参与者：这项多中心定性研究于 2017 年 7 月 1 日至 2018 年 5 月 30 日在加利福尼亚州的 3 家高容量移植中心进行了面对面半结构化访谈，访谈对象为 3 名临床医生和失代偿性肝硬化患者。患者参与者为成年人，且患有肝硬化，至少有一种门静脉高压相关并发症，且目前或之前的模型预测终末期肝脏疾病钠评分≥15。临床医生参与者为在疾病过程中提供护理的医疗保健专业人员。
患者和临床医生报告的 ACP 体验。研究人员询问了患者和临床医生关于 ACP 各方面的背景、行为、想法和决策，如预后、医疗偏好、价值观和目标、替代决策以及文件记录。
研究纳入了 42 名患者（平均年龄[标准差]，58.2[11.2]岁；28 名男性[67%]）和 46 名临床医生（13 名肝病专家[28%]、11 名移植协调员[24%]、9 名肝胆外科医生[20%]、6 名社会工作者[13%]、5 名肝科执业护士[11%]和 2 名重症监护医师[4%]）。确定了 5 个代表 ACP 体验的主题：（1）大多数患者考虑价值观、目标和偏好主要发生在门诊就诊之外；（2）移植团队的乐观态度阻碍了对死亡的讨论；（3）临床医生主要将死亡作为鼓励行为改变的策略进行讨论；（4）移植团队避免与患者讨论非积极治疗方案；（5）替代决策人对临终决策准备不足。
这项研究发现，尽管预后不佳，但失代偿性肝硬化患者在疾病轨迹的整个过程中，直至生命结束，都没有充分的 ACP。这一发现可能解释了患者在生命末期接受的过度积极的维持生命的治疗。
