End-Stage Liver Disease and Treatment Decisions

描述(申请人提供)：对于终末期肝病(ESLD)患者的生命维持治疗(LST)和舒适护理决策知之甚少，这些患者是肝移植的候选患者，并被收治到重症监护病房(ICU)以治疗疾病并发症。在ICU的治疗文化中，人们希望患者能够恢复得足够好，接受新的肝脏--这是他们唯一的生存机会。这种情况发生的可能性非常小。因此，患者、家庭成员和医疗保健提供者决定放弃LST而转向舒适护理的方式是有效护理这些患者的基本知识。拟议的试点研究具有创新性，因为它将是第一次纵向研究ESLD患者、他们的家人和提供者对LST的决策以及患者在ICU期间引入舒适护理选项的同时观点。这项研究的目的是为LST决策过程提供丰富的描述。本研究从患者、家庭成员和医疗服务提供者的角度出发，有三个具体目的：(1)比较和对比每个LST和舒适护理决策的体验和意义；(2)描述关于LST和舒适护理决策的纵向过程；(3)找出导致达成共识的因素，以选择最佳护理。这第一步是为了实现拟议研究的长期目标：通过整合特定的决策点，将舒适护理选项引入ESLD管理指南，改善ESLD患者及其家人的决策过程。本研究将采用多案例研究设计和四种数据收集策略。使用多种策略有助于研究参与者对决策的多种和潜在的不同解释。数据将从6-10名患者、他们的家人和护理他们的跨学科提供者团队中收集。数据将从患者入院到死亡或由于病情稳定而转出ICU的时间收集。使用人种学方法的定性描述将是数据分析的方法。这项研究将在两家有肝脏移植计划的医院进行。这项拟议的试点研究回应了美国国立卫生研究院关于改善临终关怀的科学状况声明。这项研究具有相关性，因为它解决了文献中关于LST和舒适护理决策的空白，这些文献针对的是未得到充分研究的人群，据估计，美国有550万慢性肝病或肝硬变患者。就医疗保健成本而言，慢性肝病是最昂贵的消化系统疾病之一(每年20亿美元)，影响着许多美国人在他们一生中最富有成效的岁月。

DESCRIPTION (provided by applicant): Little is known about life-sustaining treatment (LST) and comfort care decision making for patients with end-stage liver disease (ESLD) who are candidates for liver transplantation, and are admitted to the intensive care unit (ICU) for treatment of disease complications. In the curative culture of the ICU, the hope is that the patients will recover well enough to receive a new liver - their only chance of survival. The probability of this happening is very small. Thus, the ways in which patients, family members, and health care providers decide to forgo LST and turn to comfort care is essential knowledge for effectively caring for these patients. The proposed pilot study is innovative as it will be the first longitudinal study of the concurrent perspectives of patients with ESLD, their family members, and providers on decision making about LST and the introduction of comfort care options during the patients' stay in the ICU. The purpose of the study is to provide a rich description of the LST decision making process. The study has three specific aims from the perspective of patients, family members, and health care providers: (1) Compare and contrast the experience and the meanings of each LST and comfort care decision, (2) describe the longitudinal process during which decisions are made about LST and comfort care, and (3) identify factors that lead to consensus building of understanding to choose optimal care. This first step is needed to accomplish the long-term goal of the proposed research: improving the decision making process for patients with ESLD and their families by integrating specific decision points to introduce comfort care options into ESLD management guidelines. The study will use a multiple case study design and four data collection strategies. Using multiple strategies helps in the presentation of multiple and potentially different interpretations by study participants about decision making. Data will be collected from 6 - 10 patients, their family members, and the interdisciplinary team of providers who cares for them. Data will be collected from patients from the time of ICU admission to the time of death or transfer out of the ICU due to stabilization of the disease processes. Qualitative description using ethnographic methods will be the method of data analysis. The study will be conducted at two hospitals with liver transplant programs. The proposed pilot study responds to the National Institutes of Health State-of-the-Science Statement for Improving End-of-Life Care. The study has relevance as it addresses a gap in the literature about LST and comfort care decision making for an understudied population estimated at 5.5 million Americans with chronic liver disease or cirrhosis. Chronic liver disease is one of the most expensive digestive diseases in term of health care costs ($ 2 billion annually) and affects many Americans in the most productive years of their lives.