End-stage liver disease is the irreversible failure of the liver, leading to damage to other organs and eventual death. It is usually a consequence of cirrhosis, a condition that occurs when a chronic liver problem, like alcohol-related liver disease, hepatitis C, hepatitis B, or metabolic dysfunction-associated fatty liver disease, progresses to its final stage of fibrosis, which is scar tissue buildup in the liver. Cirrhosis has no specific treatment, but treating the underlying cause of liver disease can slow its progression.
While many patients with cirrhosis can remain stable for 10 to 15 years or more, cirrhosis is unpredictable, and patients often face complex health needs. Continued alcohol consumption, infections, or other factors can cause critical worsening, requiring hospitalization or treatment in the intensive care unit. When patients develop cirrhosis complications (like ascites, variceal bleeding, encephalopathy, or liver cancer) their survival may drop to less than two years. Some patients with cirrhosis may qualify for a transplant, but for others, transplantation is not an option.
In late 2023, Yale received a generous gift to establish a new pilot program to provide behavioral health care for patients with end-stage liver disease who are not eligible for transplant.
“There is a lot of emotional complexity that comes along with a cirrhosis diagnosis, and our patients need more than just symptom management,” said Joseph Lim, MD, professor of medicine (digestive diseases), director of clinical hepatology, and vice-chief of the Section of Digestive Diseases (hepatology). “This pilot program will help us provide sobriety support, mental health, and other behavioral health care to support the emotional and psychosocial needs of our patients.”
While every patient in the program has their own unique set of needs, there are a few common concerns. For example, some patients need care for alcohol use disorder immediately after they are discharged from the hospital to help them avoid returning to alcohol use.
Hepatologists are eternally optimistic. We’ve seen ample evidence that with the right care and support, our patients may actually reverse their disease or at least feel better.
Simona Jakab, MD
“We use evidence-based relapse prevention strategies to help patients think through the week ahead and identify situations or triggers where they may be tempted to drink. Then, we work together to build skills so they can plan ahead rather than just white-knuckling it,” says Kelly DeMartini, PhD, research scientist in psychiatry and clinical health psychologist, the director of the end-stage liver disease behavioral health program.
Other patients who were diagnosed with cirrhosis years ago may now have complications and need support to help manage the stress and unpredictability of their diagnosis. Other patients have anxiety and depression, which often go along with having a chronic, life-shortening illness. For patients with complications from cirrhosis and no path to transplantation, psychological care can help them cope with a terminal diagnosis.
“Many of our patients are dealing with multiple stressors simultaneously,” says DeMartini. “We talk to them about how to manage health anxiety, how to manage the depression that can come with being physically limited and not being able to do what you want, or how to manage comorbid depression and anxiety with an alcohol use disorder. I think the biggest and sometimes trickiest part of this care is to manage all of those concerns together.”
“This program is revolutionary,” said Lamia Haque, MD, MPH, assistant professor of medicine (digestive diseases) and director of the Yale Clinic for Alcohol and Addiction Treatment in Hepatology. “There aren’t many places in the country where this kind of care is co-located. Our patients need more than just treatment for their end-stage medical complications; they also need care that addresses the factors leading to those complications and aims to improve their quality of life. I hope to see more models like this implemented across the country because the evidence shows patients benefit from comprehensive integrated care.”
The new behavioral health pilot program is just one part of the new Liver Home at Yale, which is directed by Simona Jakab, MD, associate professor of medicine (digestive diseases), co-firm chief of the Klatskin Inpatient Liver Service. The Liver Home is a new outpatient program focused on multidisciplinary care for individuals with advanced liver disease who are not eligible for organ transplant.
“Our vision is to truly provide wraparound integrated care, where we can offer an all-hands-on-deck approach to support patients who often have many medical, clinical, psychological, and life challenges,” said Jakab.
To advance that goal, the end-stage liver disease team recently expanded to include a social worker who can identify specific life needs, like financial assistance, housing support, and access to food for each patient.
“We are trying to take a holistic look at each patient and make sure they can access the services they require,” Jakab said.
The Yale team plans to expand the program to help families and caregivers who may benefit from education about cirrhosis or need support to care for patients at home. They are also collecting clinical and patient-reported outcomes to measure the program's success and make improvements and additions.
“Hepatologists are eternally optimistic,” said Jakab. “We’ve seen ample evidence that with the right care and support, our patients may actually reverse their disease or at least feel better. Even if that’s not possible for everyone, we hope this program will help our patients have the highest possible quality of life.”
Since forming one of the nation’s first sections of hepatology more than 75 years ago and then gastroenterology nearly 70 years ago, Yale School of Medicine’s Section of Digestive Diseases has had an enduring impact on research and clinical care in gastrointestinal and liver disorders. To learn more about their work, visit Internal Medicine: Digestive Diseases.