What support do people with liver cirrhosis and their families need?

People with liver cirrhosis and their families need more information about their condition and prognosis and greater access to palliative care, a systematic review of studies on the needs of people with cirrhosis of the liver has concluded.

The study, published in the Journal of Hepatology, found that liver specialists often felt out of their depth in talking to patients with cirrhosis about the unpredictable course of their liver disease. Clinicians were also reluctant to raise the issue of palliative care for people on the transplant list.

Cirrhosis of the liver results from long-term infection with viral hepatitis or repeated injury due to alcohol consumption, or to a build up of fat in the liver. Liver function declines unpredictably and some people may move back and forth between compensated (functioning) cirrhosis and decompensated cirrhosis that requires intensive treatment or hospitalisation. People with advanced cirrhosis are candidates for liver transplantation.

The systematic review identified 11 qualitative studies drawing on interviews with 78 people and eight quantitative studies comprising 1335 people. The study identified common themes regarding communication, information and the management of disease in interviews with patients and healthcare professionals.

Patients consistently drew attention to several information gaps:

• A lack of understanding of their disease, its progression or prognosis.
• A lack of understanding of the need for hepatocellular carcinoma (HCC) screening.
• A lack of understanding of the connection between cirrhosis and symptoms they experienced.
• A lack of awareness of palliative care.
• Dissatisfaction with communication from healthcare professionals.

Patients complained that information about cirrhosis was too medicalised, and not enough time was spent during consultations on answering questions and providing information.

Patients and their families often felt stigmatised by healthcare professionals due to perceptions among less experienced healthcare workers that cirrhosis was a consequence of alcohol misuse or drug use.

Patients wanted information about home-based care, how to manage their symptoms and what would happen if they needed to be admitted to hospital.

They wanted practical advice and support in stopping alcohol or drug use, and more information about hepatic encephalopathy and how to manage it.

Healthcare professionals were aware of the desire for more information and recognised that patients often did not understand the severity of their liver disease.

They recognised that they often provided suboptimal care for people with cirrhosis and needed to be more active in addressing quality of life issues.

Liver specialists said they lacked the skills and training to talk to patients about prognosis and end-of-life issues or about the need for screening for liver cancer. They attributed some reluctance to the unpredictable nature of liver disease; whereas some patients might progress rapidly, others might be stable for years, and also because it was often difficult to pinpoint when a patient was beginning to deteriorate until it was too late. Patient prognosis was also unpredictable because many patients are on the transplant waiting list; clinicians were reluctant to discuss end-of-life issues or palliative care with patients still on the transplant waiting list.

Primary healthcare providers considered that liver specialists would provide better care to people with cirrhosis, because they had more expertise in managing complications of cirrhosis and hepatic encephalopathy.

Primary healthcare providers often found patients with cirrhosis difficult to manage due to substance misuse or other co-morbid conditions. They wanted more training on the unpredictable course of cirrhosis and how impaired liver function affects the metabolism of medicines.

They also wanted more training on the palliative care available for people with cirrhosis and on how to raise the issue with patients. Physicians experienced resistance from patients and families to talking about palliative care, due to a perception that it meant end-of-life care.

Palliative care outside the hospital setting might consist of any of the following:

• Large-volume paracentesis (drainage of a build-up of fluid from the abdomen); has the potential to reduce hospital admissions in people with ascites.
• Pain relief that is sensitive to the potential renal toxicity of NSAIDs in people with cirrhosis and to the impact of opioid side-effects on the symptoms of hepatic encephalopathy.
• Symptom management.
• Home-based care or hospice care in end-stage liver disease and hepatic encephalopathy.
• Planning of care if liver disease should worsen.
• Discussion of end-of life issues with patients and family, including advance directives and wishes regarding resuscitation, powers of attorney
• Caregiver support.

The review concluded that better communication would be supported by:

• Development of lists of recommended questions to be provided to patients and their families before consultation, to encourage discussion.
• Training to reduce stigma of cirrhosis among healthcare workers.

Improved access to palliative care would be supported by:

• Screening tools that can help identify patients with a need for early referral to palliative care.
• Improved care coordination between specialist liver teams, general practitioners and palliative care teams.