Integrating palliative care for patients with chronic liver disease
Chronic liver disease of any aetiology can progress to cirrhosis and portal hypertension, with associated complications. Patients with cirrhosis are at higher risk of liver-related complications, hepatocellular carcinoma and death. Decompensated cirrhosis has a poor prognosis, and is defined by the presence of ascites, hepatic encephalopathy, variceal haemorrhage or nonobstructive jaundice. Patients with chronic liver disease also experience physical and psychological symptoms with associated functional, psychosocial and spiritual consequences. As chronic liver disease progresses, these symptoms and consequences, acute complications, hospitalisations and palliative care needs increase, highlighting the importance of early integration of a needs-focused palliative approach to care alongside disease-orientated management for chronic liver disease. Palliative care may involve referral to a specialist palliative care service. Principles of palliative care for patients with chronic liver disease summarises the principles of palliative care for patients with chronic liver disease.
Collaborate with, and define the roles and responsibilities of, clinicians, services, families and carers. Consider whether or when to refer to a specialist palliative care service—see Who provides palliative care? [NB4].
Educate the patient and their carer(s) about the prognosis, if appropriate—see Overview of communicating with and supporting patients with palliative care needs.
Discuss the patient’s preferences, values and goals of care initially and continue to review.
Support early and ongoing advance care planning, including discussion of resuscitation and hospitalisation.
Identify and support emotional and psychosocial needs.
Provide support for disorders of substance use (if indicated).
Anticipate and plan for transitions across various settings, and acknowledge patient and family preferences—see Where is palliative care provided?.
Create and maintain an individualised disease management plan to address current health problems and those expected to arise:
- Manage symptoms and complications, including creating a symptom management plan.
- Plan an approach to modify or stop treatments as the illness progresses (see Decisions about withdrawing or withholding treatment), including drugs and large-volume paracentesis (if relevant) [NB5].
Support the family and principal carer.
Support patients and their families and carers experiencing loss, grief and bereavement.
Prepare for the last days of life.
NB1: It is often appropriate to introduce palliative care from the time it is recognised that a patient has progressive, life-limiting illness; palliative care can be continued alongside disease-orientated management for chronic liver disease.
NB2: Aspects of palliative care may need to be introduced or revisited depending on patient and carer needs, and the clinical context. The approach and priorities of care often change with the phase of the illness.
NB3: Caring for patients with palliative care needs can be personally and professionally demanding—for further information and advice on building resilience and avoiding burnout, see Healthcare professional wellbeing in palliative care.
NB4: Consideration of liver transplantation, regardless of eligibility, should integrate a palliative focus in care, including referral to specialist services if available. Patients may have increased palliative care needs, deteriorate or die while waiting for a suitable donor. For a summary of indications and considerations for liver transplantation, see Liver transplant referral in the Liver Disorders guideline.
NB5: Withdrawing active treatment of encephalopathy and ascites, from which a patient may have recovered many times, can be confronting for patients and their families and carers. If continuing these treatments is no longer beneficial (eg paracentesis poses an unacceptably high risk of catastrophic bleeding, or the patient is deteriorating despite antibiotic therapy), compassionately explain that the patient is entering the last days of life and can no longer recover from liver failure.
It is often preferable to introduce palliative care early for patients with chronic liver disease because this can:
- improve quality of life
- reduce symptom burden and hospital admissions
- increase advance care planning discussions.
For general benefits of introducing palliative care early, and considerations to inform the approach, see Introducing a patient to palliative care.
Prognostication in patients with chronic liver disease is challenging; frequent hospitalisations, acute exacerbations, and episodes of recovery are common. Indicators of increasing palliative care needs and limited life expectancy in patients with chronic liver disease provides indicators of increasing palliative care needs and limited life expectancy in patients with chronic liver disease.
unplanned hospitalisation with decompensated disease in the previous 12 months
ascites, particularly refractory ascites [NB2]
acute-on-chronic liver failure
hepatic encephalopathy [NB3]
significant infection
frailty or sarcopenia
comorbid hepatocellular cancer
variceal haemorrhage
unobstructed jaundice
hepatorenal syndrome
Child–Pugh class C cirrhosis [NB4]
MELD score of 20 or higher [NB5]
MELD = Model for End-stage Liver Disease
NB1: Also consider general factors when deciding if a patient requires palliative care; see Introducing a patient to palliative care.
NB2: In patients with refractory ascites, it is not possible to effectively mobilise the fluid or prevent ascites from reaccumulating, despite salt restriction and diuretic therapy; this occurs because diuretics are either ineffective or not tolerated. Refractory ascites has a 1-year mortality of approximately 70%Mazzarelli, 2018.
NB3: Hepatic encephalopathy is associated with a poor prognosis in patients with acute-on-chronic liver disease. After the first episode of hepatic encephalopathy, patients with episodic hepatic encephalopathy have a cumulative survival rate of 42% at 1 year and 23% at 3 yearsGarcia-Martinez, 2011.
NB4: The Child–Pugh score estimates 1- and 2-year survival in patients with cirrhosis. It considers total bilirubin, serum albumin, international normalised ratio (INR), degree of ascites, and degree of hepatic encephalopathy. An online calculator is available. Patients with Child–Pugh class C cirrhosis have a 1-year mortality rate of approximately 55%Mazzarelli, 2018.
NB5: The MELD score estimates 3-month survival in patients with cirrhosis. It is based on serum bilirubin, creatinine and INR. An online calculator is available.