People living with denounced liver cirrhosis face a burden of major symptoms that can significantly reduce the quality of life. Experts say gastroenterologists can do more to address the physical, psychological and psychosocial care needs of this patient population.
“I know early in my GI fellowship how to treat medical problems in patients with uncompensated liver cirrhosis, such as ascites, hepatic encephalopathy. Dr. Ufele, an assistant professor of medicine at Massachusetts General Hospital in Boston and Harvard University School of Medicine, “I was really struggling when I was a trainee,” added Dr. Ufele.
Since then, Dr. Ufele said Gastroenterology and endoscopic news, She has worked to improve the quality of life through practice and research for these patients.
Compensated patients with liver cirrhosis have a median survival of 12 years without transplantation, Dr. Ufele noted. However, when the liver compensates for the price, the number can only be two years, and even lower in certain subgroups over the age of 65.
In addition to low survival rates without transplants, patients with cirrhosis who have been criticized also face a very high burden of physical and psychological symptoms. According to a 2019 systematic review and meta-analysis, patients with end-stage liver disease reported a high incidence of pain, fatigue, depression and anxiety similar to the rate seen in patients with cancer (Paria's medicine 2019; 33[1]:24-36).
Complications such as ascites and hepatic encephalopathy worsen the burden of symptoms and further reduce the quality of life in patients with cirrhosis.
“These conditions manifest as a spectrum of neurocognitive impairments, causing them to sleep difficulties, difficulty in numbers and thinking, delirium, and even coma,” Elliot Tapper, a liver specialist at the University of Michigan Health University, told Anne Arbor. “Beyond that, there are many symptoms that independently affect quality of life, including muscle cramps, itching, falls, sexual dysfunction, sleep dysfunction and chronic pain.”
Treating and sensitive diagnostics
In a study of 15 patients with terminal liver disease and their caregivers, Dr. Ufele and her collaborators found that the majority of their families were shocked by the diagnosis and were not fully prepared (Dis Dis Sci 2021; 66[9]：2942-2955). Some reported that they felt lonely and isolated, had no idea where to seek support, and received little or no resources from liver specialists. Such feelings can be exacerbated by stigma associated with uncompensated liver cirrhosis, which can lead patients to maintain their own diagnosis.
“One example I want to give is that if you are comparing patients with stage IV cancer, they can find many resources online related to cancer, patient advocacy groups, and medical society coordinated to support them,” Dr. Ufere said. “However, patients with cirrhosis who have similarly poor prognosis in the absence of liver transplants feel that they are not open about the diagnosis due to the associated stigma, but also feel that they are unable to gain the support that cancer patients can gain in terms of empathy and resources.”
A simple way for doctors to provide more support to these patients is to provide basic educational tools, such as a discharge checklist and a list of warning signs of complications, she said patients in her study reported not receiving such tools.
“All patients should be educated about their condition and caregivers should be involved in that education,” agreed Dr. Tupper. “We provide people with online handouts and links that have videos. This is a good first step.”
To better read the mental and emotional health of patients, it is important for providers to ask patients with compensatory cirrhosis beyond the physical symptoms of ascites or hepatoencephalopathy, Dr. Ufele said.
“That very important act that calls for this population to be a lot [of patients]who often suffer in silence,” she said, some important questions include: “Are you having trouble sleeping? Do you feel sad or depressed due to illness? Did you have an issue with your energy level?”
Dr. Ufere recommended that clinicians use simple numerical 1-10 rating scales, such as the Edmonton Symptom Rating Scale, to assess patients' symptoms. It is also important to work with the patient's primary care physicians to work with local services in psychology and psychiatry, home health, nutrition and physical therapy, she said.
Precare Planning Conversation
An honest discussion of care goals is also important to address quality of life issues for both patients and caregivers.
“We need to repeat pre-care planning conversations with patients and families, and actually assess goals, values and preferences, and ensure that we are fully informed of what end-of-life care looks like,” Dr. Ufere said. “Many Americans imagine dying in their homes that are not intensive care. So, if they weren't having a conversation about the possibility of dying in the hospital or in the ICU, they denied the opportunity to really think about what they wanted, where they wanted to die, who they wanted to be with, who they wanted to be with, where they wanted to be if they were so sick.”
Patients with decomposed liver cirrhosis experience high medical use and high medical costs, especially in the past three months. A conversation about pre-care planning could stop patients from receiving potentially unnecessary and useless care, Dr. Ufele said.
This is especially important for the most ill patients who are not eligible for liver transplants, said Ashwani K. Singal, MD, a transplant liver scientist and professor at the Louisville School of Medicine in Kentucky. Dr. Singal said clear and transparent conversations are difficult.
“When I talk to patients and their caregivers, what they want to know is the truth and reality of their situation,” he said. “It's important to give real numbers so that patients can survive, get better or leave the hospital. From there they can think about their care goals and we can connect them to the palliative care team. [to help them] Make those decisions. ”
– Ashley Welch
Dr. Ufere published some of her comments during a session at ACG 2024. The sources have not reported any related financial disclosures. Dr. Singal is a member of the Gastroenterology and Endoscopic News Editorial Committee.
This article is from the May 2025 printed issue.
