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.
An accumulation of fluid in the abdomen; may be caused by liver damage, especially cirrhosis.
- decompensated cirrhosis
The later stage of
cirrhosis, during which the liver cannot perform some vital functions and
complications occur. See also ‘cirrhosis’ and ‘compensated cirrhosis’.
A disease or infection affecting the brain.
- hepatocellular carcinoma (HCC)
Liver cancer. A long-term complication of chronic inflammation of the liver or cirrhosis.
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
Patients consistently drew attention to several information
- A lack of understanding of their disease, its
progression or prognosis.
- A lack of understanding of the need for hepatocellular carcinoma (HCC)
- A lack of understanding of the connection
between cirrhosis and symptoms they experienced.
- A lack of awareness of palliative care.
- Dissatisfaction with communication from
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
They wanted practical advice and support in stopping alcohol
or drug use, and more information about hepatic encephalopathy and how to
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
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
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
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
- Caregiver support.
The review concluded that better communication would be
- Development of lists of recommended questions to
be provided to patients and their families before consultation, to encourage
- Training to reduce stigma of cirrhosis among
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.