Deaths from advanced chronic liver disease are increasing over the past 50 years¹. Regardless of what type of gastroenterologist you are, you can probably think of a case of a patient with advanced chronic liver disease who has died. You may even have reflected on whether the circumstances could have been different if only we had the discussions earlier on the patient’s wishes (I know I have). This also adds a significant financial burden for recurrent admissions for these patients. This patient group is probably the most emotionally challenging as they are usually young and the trajectory is difficult to predict. It is not common for patients with advanced chronic liver disease do not die on their first admission. What can we do to improve this? Can we be equipped to improve this aspect of patient care?

The British Society of Gastroenterology (BASL) special interest group for end-of-life care have previously described what good palliative care looks like². Wright et al³ have developed a generic business case which has been costed that could be adapted for local use. This was created via a two-stage process: initially open questions on what multidisciplinary team felt “an ideal service” should look like then more detailed questions to ascertain possible differences in opinion. Much of this work is centred around an established level 2 hepatology centre (University Hospitals Southampton, UK). The most stark statistic that really summarises why this is needed is that 16% of those that died with advanced chronic liver disease over a 1 year period received specialist palliative care support.

It is important to note is perhaps the greatest need for this are smaller centres that do not have the same resources and so there will be flexibility on how this is used. This is another example why hepatology “hub and spoke” model of care should be where we head: being able to share best practice with each other is how we progress care for our patients.

Nevertheless, this tool is much-needed as we are bringing palliative care for these group of patients into stronger focus. I would encourage you to read this, examine the tool and see how it could be implemented at your own centres.

References

1. Williams R, Alexander G et al. Disease burden and costs from excess alcohol consumption, obesity and viral hepatitis: fourth report of the Lancet Standing Commission on Liver Disease in the UK. Lancet 2018; 391: 1097-1107.
2. Woodland H, Hudson B, Forbes K et al. Palliative care in liver disease: what does good look like? Frontline Gastroenterology 2020; 11: 218-227.
3. Wright M, Willmore S, Verma S et al. Developing a business care for advanced chronic liver disease. Frontline Gastroenterology 2024; 15: 104-109.