End-Stage Liver Disease and Treatment Decisions

终末期肝病和治疗决策

• 批准号: 7475838
• 负责人: LISSI HANSEN
• 金额: $ 18.88万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-07-26 至 2010-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7475838
• 关键词: Acute; Address; Admission activity; Affect; American; Caring; Case Study; Cessation of life; Chronic; Cirrhosis; Clinical; Conflict (Psychology); Consensus; Data; Data Analyses; Data Collection; Decision Making; Digestive System Disorders; Disease; Disease Management; Distress; Emotional; Event; Family; Family health status; Family member; Goals; Guidelines; Health; Health Care Costs; Health Personnel; Healthcare Systems; Hospitalization; Hospitals; Individual; Intensive Care Units; Interview; Investigation; Knowledge; Lead; Length; Life; Literature; Liver; Liver diseases; Longitudinal Studies; Mediation; Methods; NIH Program Announcements; Organ; Outcome; Palliative Care; Participant; Patient Admission; Patient Care; Patients; Persons; Pilot Projects; Population; Population Heterogeneity; Probability; Process; Provider; Purpose; Research; Research Design; Sampling; Science; Staging; Time; Transplantation; United States; United States National Institutes of Health; Waiting Lists; Withdrawing Treatments; cost; day; end of life care; ethnographic method; expectation; experience; improved; innovation; liver transplantation; programs; prospective

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.

描述（由申请人提供）：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人，并被送入重症监护室（ICU）治疗疾病并发症。在ICU的治疗文化中，希望患者能够恢复得足够好，以接受新的肝脏-他们唯一的生存机会。这种情况发生的概率非常小。因此，患者，家庭成员和卫生保健提供者决定放弃LST并转向舒适护理的方式是有效照顾这些患者的必要知识。拟议的试点研究是创新的，因为它将是第一个纵向研究的同时观点与ESLD患者，他们的家庭成员，和供应商的决策有关LST和舒适护理选项的介绍，在病人的留在ICU。这项研究的目的是提供一个丰富的描述LST的决策过程。本研究从患者、家属和医疗服务提供者的角度出发，有三个具体目标：（1）比较和对比每个LST和舒适护理决策的经验和意义;（2）描述LST和舒适护理决策的纵向过程;（3）确定导致共识建立的因素，以选择最佳护理。这第一步需要完成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患者及其家属的决策过程。该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做出多种可能不同的解释。数据将从6 - 10名患者，他们的家庭成员和照顾他们的跨学科提供者团队中收集。将从患者入住ICU至死亡或因疾病进程稳定而转出ICU期间收集数据。使用人种志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移植计划的医院进行。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，估计有550万美国慢性肝病或肝硬化患者。慢性肝病是最昂贵的消化系统疾病之一，就医疗保健费用而言（每年20亿美元），并影响许多美国人在他们生命中最具生产力的几年。

项目成果

The power of the liver transplant waiting list: a case presentation.

肝移植等候名单的力量：案例介绍。

• DOI: 10.4037/ajcc2014399
• 发表时间: 2014
• 期刊: American journal of critical care : an official publication, American Association of Critical-Care Nurses
• 作者: Hansen,Lissi;Yan,Yi;Rosenkranz,SusanJ
• 通讯作者: Rosenkranz,SusanJ

Life-sustaining treatment decisions in the ICU for patients with ESLD: a prospective investigation.

ICU 中 ESLD 患者的生命维持治疗决策：一项前瞻性调查。

• DOI: 10.1002/nur.21488
• 发表时间: 2012
• 期刊: Research in nursing & health
• 影响因子: 2
• 作者: Hansen,Lissi;Press,Nancy;Rosenkranz,SusanJ;Baggs,JudithGedney;Kendall,Judith;Kerber,Amanda;Williamson,Angel;Chesnutt,MarkS
• 通讯作者: Chesnutt,MarkS