End-of-Life Communication in End-Stage Liver Disease

Thesis (Ph.D.)--University of Washington, 2013University of Washington Abstract End-of-Life Communication in End-Stage Liver Disease: Three Empirical Studies Paula Cox-North Chair of the Supervisory Committee: Associate Professor Ardith Doorenbos School of Nursing There is very little literature on palliative approaches to end-of life care discussions in those with chronic life limiting liver disease. Studies in other life limiting chronic illnesses have shown that patients rarely discuss end- of- life care preferences with their health care providers, in spite of the desire to do so, suggesting poor quality of communication. There are effective and dynamic systems of palliative care that ensure that the final illness of a patient will be of the highest quality possible. Establishing these systems of palliative care has in part been based on studies that have measured quality of communication after a specific intervention or treatment. But in order to evaluate the quality of communication after an intervention or treatment, a baseline understanding of patient needs and expectations is needed. The three empirical papers that are the core of this dissertation address the needs and expectations of patients by describing the transition to end-of-life and timing of care in end-stage liver disease, along with an exploring end-of- life communication preferences, and the barriers to and facilitators of patient- provider communication about end-of-life issues. These studies suggest practical guidance to health care providers about timing and approach to end-of life discussions, identify patient barriers and facilitators to discussions of end-of life care issues, and identify future targets for interventions aimed at improving the quality of communication