Department of Digestive Diseases and Transplantation, Einstein Healthcare Network, Philadelphia, PA.
Division of Gastroenterology, University of Michigan, Ann Arbor, MI.
Hepatology. 2020 Jun;71(6):2149-2159. doi: 10.1002/hep.31226.
Palliative care (PC) that has evolved from a focus on end-of-life care to an expanded form of holistic care at an early stage for patients with serious illnesses and their families is commonly referred to as nonhospice PC (or early PC). Patients with end-stage liver disease (ESLD) suffer from a high symptom burden and a deteriorated quality of life (QOL), with uncertain prognosis and limited treatment options. Caregivers of these patients also bear an emotional and physical burden similar to that of caregivers for patients with cancer. Despite the proven benefits of nonhospice PC for other serious illnesses and cancer, there are no evidence-based structures and processes to support its integration within the routine care of patients with ESLD and their caregivers. In this article, we review the current state of PC for ESLD and propose key structures and processes to integrate nonhospice PC within routine hepatology practice. Results found that PC is highly underutilized within ESLD care, and limited prospective studies are available to demonstrate methods to integrate PC within routine hepatology practices. Hepatology providers report lack of training to deliver PC along with no clear prognostic criteria on when to initiate PC. A well-informed model with key structures and processes for nonhospice PC integration would allow hepatology providers to improve clinical outcomes and QOL for patients with ESLD and reduce health care costs. Educating hepatology providers about PC principles and developing clear prognostic criteria for when and how to integrate PC on the basis of individual patient needs are the initial steps to inform the integration. The fields of nonhospice PC and hepatology have ample opportunities to partner clinically and academically.
姑息治疗（PC）已经从关注临终关怀演变为为患有严重疾病的患者及其家属在早期提供整体护理的扩展形式，通常被称为非临终关怀 PC（或早期 PC）。终末期肝病（ESLD）患者的症状负担高，生活质量（QOL）下降，预后不确定，治疗选择有限。这些患者的护理人员也承受着与癌症患者护理人员相似的情感和身体负担。尽管姑息治疗对其他严重疾病和癌症的益处已得到证实，但目前没有基于证据的结构和流程来支持将其纳入 ESLD 患者及其护理人员的常规护理中。在本文中，我们回顾了 ESLD 的姑息治疗现状，并提出了将非临终关怀 PC 纳入常规肝脏病学实践的关键结构和流程。结果发现，姑息治疗在 ESLD 护理中未得到充分利用，并且仅有有限的前瞻性研究可用于证明将姑息治疗纳入常规肝脏病学实践的方法。肝脏病学提供者报告缺乏提供姑息治疗的培训，并且没有明确的预后标准来确定何时开始姑息治疗。一个有充分信息的模型，具有非临终关怀 PC 整合的关键结构和流程，将使肝脏病学提供者能够改善 ESLD 患者的临床结果和 QOL，并降低医疗保健成本。向肝脏病学提供者传授姑息治疗原则，并根据个体患者的需求制定明确的预后标准来确定何时以及如何整合姑息治疗，是实现这一目标的初始步骤。非临终关怀 PC 和肝脏病学领域有充分的机会在临床和学术上进行合作。
