Dying with end stage liver disease with cirrhosis: insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment.

OBJECTIVES: To understand patterns of care and end-of-life preferences for patients dying with end stage liver disease with cirrhosis (ESLDC).

METHODS: Data were collected during the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a prospective cohort study of seriously ill hospitalized adults at five teaching hospitals in the United States, and included all patients enrolled in SUPPORT with ESLDC.

RESULTS: Of 575 patients with ESLDC, 166 died during index hospitalization, and 168 died in the following year. The majority were male (65%) and white (80%); the median age was 52 years. Most rated their quality of life as poor or fair, and multiple comorbidities were common. Most spent their last few days completely disabled. Families often reported loss of most income and the need to leave work or other activities in order to care for patients. Pain was at least moderately severe most of the time in one-third of patients. End-of-life preferences were not associated with survival. Most patients (66.8%) preferred CPR, but DNR orders and orders against ventilator use increased near death.

CONCLUSIONS: Patients with liver disease were young, likely to be male, and often had low incomes. The high burden of pain was comparable to that reported for patients with lung and colon cancer. Persons dying with liver disease may benefit from increased attention to relief of symptoms, improved home care, and advanced care planning.