End-Stage Liver Disease and Treatment Decisions

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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.