Palliative care can ease burden for liver disease patients
By A.J. Hostetler, Communications Director
Stravitz-Sanyal Institute for Liver Disease and Metabolic Health
Doctors say too many people with advanced liver disease suffer from significant symptom burden, but there is an important medical service that could make their lives easier: palliative care.
Unlike hospice, palliative care is not limited to the final months of life. It can be started early to control pain, ease fatigue, treat confusion, and other bothersome symptoms, as well as support families who shoulder high caregiver burdens and burn out. Yet only about 30% of hospitalized cirrhosis patients receive a palliative care consult, and most of those occur in the last days of life.
In a recent review article published by the Annals of Palliative Medicine, a group of VCU clinician-researchers, led by the Institute’s Hannah Lee, M.D., discuss the need for physicians to integrate palliative care into their management of chronic liver disease. They envision doctors using a multidisciplinary care model to create environments to optimize access, inclusion, empowerment and equity for patients to receive patient-centered, holistic care.
A growing crisis
The need is growing. Cirrhosis is now the fourth leading cause of death for Americans ages 45 to 64, killing more than 50,000 people a year in the United States. Worldwide, it ranks as the tenth leading cause of death. Liver cancer linked to cirrhosis is the third leading cause of cancer deaths.
The virus hepatitis C once fueled much of the problem, but new curative therapies have sharply curtailed its impact. Now two other conditions dominate: alcohol-related liver disease (ALD) and metabolic dysfunction-associated steatotic liver disease (MASLD).
Alcohol use rose during the COVID-19 pandemic, and deaths from ALD climbed as well. ALD is now the top reason for liver transplants. MASLD, tied to obesity and diabetes, is expected to surpass ALD within the next decade.
Daily struggles
Patients with cirrhosis face numerous unpleasant symptoms, such as fatigue, itching, pain, swelling and sleep problems. Many develop confusion from toxins the liver can’t filter, a condition called hepatic encephalopathy. Complications can include internal bleeding, infections or kidney failure.
Families carry the load of daily care, from managing medications to watching for emergencies. Repeated hospitalizations add to the stress of financial and emotional strain.
Palliative care can offer relief from symptoms, guidance on treatment choices and support for caregivers. Studies show it can reduce unnecessary hospitalizations and improve quality of life.
Why it’s missing
Cirrhosis is unpredictable. Patients can be stable for long stretches, followed by sudden decline. That uncertainty makes some doctors hesitant to raise the issue. Others avoid it for fear of signaling that treatment is being stopped.
Access is another barrier. There are too few specialists, especially in rural areas. Hepatologists rarely receive training in palliative care skills like pain management or advance care planning.
Unequal access
The gaps are even wider in disadvantaged communities. Liver disease hits hardest in low-income areas and among people of color. Black, Hispanic and Native American patients are less likely to be screened early, treated for alcohol use, or referred for palliative care. They are more likely to die in hospitals rather than at home or in hospice.
Health literacy adds to the challenge and contributes to the health inequities. A preliminary study in chronic liver disease shows lower health literacy is associated with alcohol related liver disease, anxiety/depression, and poorer quality of life.
In addition, alcohol related liver disease, mental health disorder, anxiety, and poorer quality of life were also associated with higher numbers of hospitalizations. Interventions to address poor health literacy could potentially improve mental health and quality of life, reduce hospitalizations, and improve timely receipt of palliative based care and curative treatments.
Signs of change
Medical groups including the American Association for the Study of Liver Diseases and the American Gastroenterological Association now recommend palliative care as part of routine care. Training programs are being developed to give liver specialists basic palliative care skills.
A large trial, the PAL-LIVER Study, involving14 hospitals with more than 1,200 patients has been completed, and the results are pending. They will show whether such care works better when delivered by specialists or by liver doctors trained in palliative care. Researchers also measured quality of life, depression, symptom relief, and health care use. If successful, experts say it could help build new models of care and expand access for patients who need it most.