Case Presentation
Mr B is a 47-year-old white man with ESLD secondary to hepatitis C most likely acquired from a blood transfusion in the 1970s. He has a remote history of alcohol abuse but none in the last 15 years. He presented with an episode of upper gastrointestinal (GI) bleeding from esophageal varices requiring banding and intensive care unit admission. During his admission, he developed ascites and was started on diuretics. This was his first complication from his liver disease. He had been told several years before that he had cirrhosis but never had any medical follow-up for this. He has no other comorbidities. His MELD score is 14, and he has Child B cirrhosis on this presentation. Mr B works doing various mechanic jobs, lives alone in an recreation vehicle on a friend's property, and has a sister that he is close with and is supportive. She has a teenage son, works full-time, and lives about 40 minutes away. His varices are managed with serial banding and β-blockade. After discussion of curative options as well as disease progression and trajectory, the patient wants to pursue transplant evaluation. Over the next few months Mr B, with the help of his sister, actively pursues the requirements for liver transplant listing. During this time, however, Mr. B experiences another episode of upper GI bleeding requiring hospitalization and a severe tibia fracture requiring surgery twice, with several months of external fixation. After these events, he has a worsening of his underlying liver disease and is now has Child C cirrhosis with a MELD score of 17, suggesting a median survival of 1 year and 3-month mortality of about 6%. He has developed significant ascites, which, over time, became refractory to diuretics, and leaks ascitic fluid from a large umbilical hernia. He is now requiring weekly to biweekly paracentesis for comfort management. A transjugular intrahepatic portosystemic shunt to reduce portal hypertension is being considered for long-term management of GI bleeding and refractory ascites, but with risk of further decompensation of liver function and possible death with this procedure, his decision to either pursue or forego transplantation becomes imperative. Mr B states he wants to finish evaluation, but as the urgency for transplant listing becomes greater, the increasing functional decline, depression, and health demands experienced by Mr B make managing multiple appointments very difficult and he begins to miss or cancel appointments more frequently, further delaying the process and care decisions. At this time, he is referred for palliative care evaluation, which is able to focus on maximizing his quality of life and avoiding burdensome treatments that he does not desire.