Publication to tackle the lack of support and limited understanding of ‘end of life care’ in liver disease

Posted on: 22nd March 2019

The UK’s leading liver charity, the British Liver Trust, has today launched a new publication titled ‘Thinking ahead: Planning for your future with advanced liver disease’. The launch follows recent research, published in the Journal of Hepatology, revealing that patients and their families have a poor understanding of advanced liver disease and how to get practical and psychological support.

The study, supported by the British Liver Trust and Marie Curie, showed that healthcare professionals need help to improve their communication with patients. It also highlighted that new models needed to be developed within healthcare systems to improve palliative care coordination between different medical specialties. Patients have a limited understanding of liver cirrhosis, its prognosis or treatment and addressing this could improve their quality of care.

Cirrhosis, often referred to as chronic liver disease, is an unpredictable condition.  In most cases people will suffer from decompensated cirrhosis, which is when the liver stops working properly and symptoms occur.

Dr Joseph Low, Principal Research Fellow, Marie Curie Palliative Care Research Department (UCL) who was involved in the research says:  “Most people dying from liver cirrhosis are not suitable for liver transplantation and of those in the UK who are suitable, 17% will die before a donor becomes available. Living with cirrhosis may involve considerable symptom burden.

“People often have unmet needs in five key areas: informational/educational, practical, physical, patient care and support and psychological.  This is why a supportive and palliative approach can be hugely beneficial.”

This new publication provides patients with advice for talking to their hepatology team, GP, relatives and carers about how they would like their future care to progress, encouraging early conversations so that they can make their preferred care options clear.

Vanessa Hebditch, Director of Communications and Policy at the British Liver Trust, said:  “Being diagnosed with this advanced form of liver disease can be a terrifying and confusing time for patients and their loved ones.  This is why we have produced this booklet to help understanding and enable patients and loved ones to talk to their healthcare professionals so that they can better manage their symptoms and plan for the future.  Advice on planning ahead will also provide them with valuable piece of mind.”

The charity is also calling for more research to test existing tools that identify suitable patients for supportive care as well as studies that focus on developing communication aides and innovative methods to evaluate end of life care.

The open access full research paper can be accessed here:

The publication is free to download or order from the British Liver Trust website,

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