Patients With Cirrhosis and Denied Liver Transplants Rarely Receive Adequate Palliative Care or Appropriate Management

BACKGROUND & AIMS: Patients with cirrhosis who are receiving palliative care and are not eligible for liver transplantation (LT) are often hospitalized multiple times, with lack of expectations or understanding of death and dying. We evaluated how frequently these patients received appropriate and palliative care. METHODS: We performed a retrospective study of 102 consecutive adult patients (67% men; mean age, 55 years) who were removed from the list for or declined LT from January 2005 through December 2010 at the University of Alberta, Canada. Patients' medical records were reviewed to determine their access to palliative care and relief of symptoms, the appropriateness of the goals for their care, and their requirements for acute care services. RESULTS: The patients' median Model for End-stage Liver Disease score was 20, and median time from denial of LT to death was 52 days (range, 10-332 days). The most common reasons that patients were removed from the transplant wait list were noncompliance or substance abuse (26%) and severe illness or organ dysfunction (25%). After patients were removed from the list, 17% received renal replacement therapy, and 48% were subsequently admitted to the intensive care unit. Patients spent a median of 14 days (range, 6-33 days) in the hospital after they were removed from the transplant wait list. On the basis of the Edmonton Symptom Assessment System, 65% of patients had evidence of pain, 58% had evidence of nausea, 10% had depression, 36% had anxiety, 48% had dyspnea, and 49% had symptoms of anorexia. Twenty-eight percent of all the patients had documentation of do not resuscitate status on their charts, and only 11% were referred for palliative care. CONCLUSIONS: Patients with cirrhosis who have been removed from the wait list for LT are infrequently referred for palliative care (similar to 10% of cases), although a high percentage have pain or nausea. Goals of care and do not resuscitate status are rarely discussed. Improved planning of goals of care and access to palliative services are required for these patients.