How would you define a good death?
The words ‘good’ and ‘death’ appear oxymorons; defining any death as ‘good’ may on the surface appear perverse. Yet all of us working in medicine will have witnessed patient deaths which in some sense were ‘better’ than others and, if pushed to reflect on our own mortality, identified aspects we would welcome at our own death: family at the bedside, good pain control, access to care at home or a hospice, cessation of active and futile medical interventions, time to reconcile broken relationships.
Sadly, however, I am sure our experience of hospital medicine leads us to recall many more instances where a patient’s death was anything but good. No doubt there is a negative bias in only seeing deaths in acute hospital medical beds, but a cursory reflection on patients who have died under our care over the last 12 months will quickly see great scope for improvement in the way we care for dying patients.
Providing excellent end of life care is a challenge across all specialties but delivering this to patients with end stage liver disease is particularly challenging. Let me illustrate this with a recent case I was involved in.
In the autumn a lady in her 50s with a long history of alcohol excess was admitted with jaundice and diagnosed with alcoholic hepatitis. She was a steroid responder on the Lille score and therefore continued prednisolone for 28 days while managed in the outpatients following discharge. Despite maintaining abstinence post discharge with the help of a caring and supportive family, over the next 4-5 months she had multiple acute admissions with ascites, fluid overload and then renal impairment. Despite nutritional supplements she became progressively sarcopenic. Ultimately, she was admitted with severe type 1 hepatorenal syndrome (HRS) and lobar pneumonia, from which she never recovered.
This brief vignette is entirely typical of a patient with advanced liver disease but encapsulates well many of the features that make planning and delivering palliative and end of life care in patients with liver disease so challenging. First, the patient is relatively young, and therefore there is always the hope of making it to the only definitive, life-saving treatment in liver transplantation. Despite some promising outcomes in select patients in Europe, alcoholic hepatitis is still not an accepted criterion for transplantation in the UK, but recent guidance does advocate earlier referral (ie after about 3 months abstinence) to ensure timely assessment and listing in suitable candidates. Therefore, in patients engaged in treatment (in this instance, alcohol abstinence) we work hard to get them to the point of being well enough for referral to a transplant centre, motivated by the hope of cure. Yet behind the hope is the lurking realisation that the risk of death is never far away: in the STOPAH trial, 3 month and 1 year mortality in alcoholic hepatitis was 30% and 55% respectively, regardless of intervention.
Second, the disease trajectory is unpredictable. The disease course in cancer, for example, characteristically follows a predictable decline to the point of death, making advanced planning and end of life care easier to implement and historically producing very strong links between oncology, palliative care and access to hospice beds. As hepatologists we love a good risk score, but despite our endless hunt for good biomarkers in essence advanced liver disease remains entirely unpredictable with cycles of decompensation and recovery, never really knowing which dip will be the last; we’ve all known the miraculous recovery from deaths door, but also the unexpected precipitous decline.
Third, treatments like ascitic drains, even when delivered in a palliative context, are relatively invasive, require specific expertise and an appropriate facility in which to insert them. This makes delivery of care in hospices or the community more challenging.
It was therefore with particular interest that I saw the publication of a review on Palliative care in liver disease published in Frontline. In keeping with the title (‘Palliative care in liver disease: what does good look like?’) it is a very practical article, full of simple steps that could be implemented locally. After providing some overall context (e.g. 70% of patients with end stage liver disease die in hospital), the authors discuss some of the barriers to palliative care in this patient group. A complex disease trajectory and unrealistic expectations can be issues both for patients and physicians, but one important misconception was that palliative care and active treatment are mutually exclusive. They rightly point out that despite liver transplantation offering a life saving cure, about 15% will die on the waiting list. Studies show that both these patients and those not eligible for transplantation benefit from improved symptom control through early palliative care input.
Part of the issue is getting our nomenclature right: we often use palliative and end of life care synonymously, but this is not correct and can be misleading for patients and hinder timely referrals from physicians. Furthermore, we live in a society in which death is a taboo subject and many of us feel ill-equipped to discuss it with our loved ones, let alone our patients. The article helps us navigate how we may be able to generate a culture of meaningful dialogue between us, patients and palliative care specialists at an earlier stage.
The rest of the article gives guidance on improving symptom control in the main areas related to advanced liver disease- hepatic encephalopathy, ascites, malnutrition and pain- while illustrating how this may be delivered through examples of how different hospital trusts have developed their services, such as a ward palliative MDT led by a specialist nurse at the Royal Free and a shared care liver project between Basildon Thurrock hospital and their local hospice.
If you are involved in the care of inpatients with advanced liver disease, why not engage a keen junior to do an audit on all the patients who died on your ward over the last year? This article could provide the tools to address some of the deficiencies in your own service and tailor them to local need, perhaps forming a quality improvement initiative.
Glimmers of ‘good’ can shine out of the darkness of death. We would all want it ourselves; what a rewarding thing to be involved in delivering it to others.
1. Millson C, Considine A, Cramp ME, et al. Adult liver transplantation: A UK clinical guideline-part 1: Pre-operation. Frontline Gastroenterol 2020; :1–10.
2. Thursz MR, Richardson P, Allison M, et al. Prednisolone or Pentoxifylline for Alcoholic Hepatitis. N Engl J Med 2015;
3. Woodland H, Hudson B, Forbes K, McCune A, Wright M. Palliative care in liver disease: What does good look like? Frontline Gastroenterol 2019; :1–10.