Improving end of life care for patients with end stage liver disease: What do patients want?

In 2010, chronic liver disease and cirrhosis were the 12th leading cause of mortality in the U.S., accounting for over 101,000 hospitalizations and 31,000 deaths. Decompensated cirrhosis, also known as end stage liver disease (ESLD), has a median survival of 2 years.  However, patients and their families are often ill-prepared for death due to unpredictable disease trajectory and rapid decline.  ESLD is expected to increase due to aging of the hepatitis C population and the 28.8 million aging adults currently affected by non-alcoholic fatty liver disease (NAFLD).  Quality care for ESLD patients requires an understanding of their unique needs and preferences at end-of-life (EOL).  Nevertheless, little is known about these needs and preferences from the patient’s perspective.  This study uses a qualitative approach to describe the patient’s experience of living with ESLD and to identify patient preferences for EOL care and communication about EOL issues.  Fifteen patients with ESLD will be individually interviewed.  Interviews will be recorded, transcribed verbatim and downloaded into a qualitative data management program.  Data will be coded and analyzed using the constant comparison method.  Preliminary results suggest ESLD patients 1) experience psychosocial symptoms (e.g., depression, self-blame and social isolation) and physical symptoms (e.g., pain and fatigue) that are inadequately managed, and 2) want to know their prognosis and discuss concerns about death and dying.  Final results may prompt consideration of methods to improve symptom management and quality of EOL care for ESLD patients, such as earlier palliative care referral and more open physician-patient communication.