Inequity in end-of-life care for patients with chronic liver disease in England.

BACKGROUND AND AIMS: The World Health Assembly recommends integration of palliative care into treatment of patients with any life-limiting condition, yet patients with non-malignant disease are less likely to receive specialist palliative care (SPC). This study compares SPC offered to patients with hepatocellular carcinoma (HCC) versus patients with chronic liver disease without HCC (CLD without HCC). METHODS: Patients who died from CLD or HCC over 5 years (2013-2017) in England were identified using a dataset linking national data on all hospital admissions (Hospital Episode Statistics - HES) with national mortality data from the Office for National Statistics (HES - ONS). The primary outcome was the proportion of patients who received inpatient SPC in their last year of life (LYOL). Secondary outcomes were (1) early inpatient SPC input and (2) the proportion dying in a hospice. The outcomes were compared between patients with HCC and CLD without HCC. RESULTS: 29 669 patients were identified, 8143 of whom had HCC. Patients with HCC were significantly more likely to receive inpatient SPC input-adjusted OR 3.74 (95% CI 3.52-3.97) and early inpatient SPC input-adjusted OR 7.26 (95% CI 6.38-8.25) and die in a hospice OR 8.23 (95% CI 7.33-9.24) than patients with CLD without HCC. CONCLUSIONS: These data highlight the stark inequity in access to SPC services between patients with HCC and patients with CLD without HCC in England. Addressing these inequities will improve end-of-life care for patients with CLD.

Symptom control in advanced chronic liver disease: integrating anticipatory palliative and supportive care.

The number of patients coming to hospital with liver disease is increasing. There was a worrying trend before the pandemic, and this has intensified. Despite improvements in the management of patients with advanced cirrhosis many patients will die within 6-12 months of first presentation, and, despite this, the field of palliative and supportive care in liver disease is still in its infancy. This is a narrative review. Evidence is often thin in this field. Where it exists it is cited, but much of the commentary here is based on the authors own experience and readers are free to consider it and debate it. Most patients who die of liver disease receive palliative care very late in their illness (if at all). There are many barriers to supportive and palliative care in liver disease which are discussed. Symptom control is often poor because of these barriers. Before symptomatic control can be established, patients in need of it must to be identified and conversations had about the severity of their situation and what their wishes would be. Interest in palliative and supportive care for patients liver disease is growing as is the number of hepatologists and palliative care clinicians within the UK with an interest. It is important that this enthusiasm and interest can be rolled out and scaled up across the UK so that all patients, wherever they are, can benefit. The aims of these articles are first to highlight and bring into focus the unmet need for palliative and supportive care in liver disease and second to provide suggestions for its integration into liver services. Ask yourself the question: where would I start in my hospital to help these patients?

Palliative care in liver disease: what does good look like?

The mortality rate from chronic liver disease in the UK is rising rapidly, and patients with advanced disease have a symptom burden comparable to or higher than that experienced in other life-limiting illnesses. While evidence is limited, there is growing recognition that care of patients with advanced disease needs to improve. Many factors limit widespread provision of good palliative care to these patients, including the unpredictable trajectory of chronic liver disease, the misconception that palliative care and end-of-life care are synonymous, lack of confidence in prescribing and lack of time and resources. Healthcare professionals managing these patients need to develop the skills to ensure effective delivery of core palliative care, with referral to specialist palliative care services reserved for those with complex needs. Core palliative care is best delivered by the hepatology team in parallel with active disease management. This includes ensuring that discussions about disease trajectory and advance care planning occur alongside active management of disease complications. Liver disease is strongly associated with significant social, psychological and financial hardships for patients and their carers; strategies that involve the wider multidisciplinary team at an early stage in the disease trajectory help ensure proactive management of such issues. This review summarises the evidence supporting palliative care for patients with advanced chronic liver disease, presents examples of current best practice and provides pragmatic suggestions for how palliative and disease-modifying care can be run in parallel, such that patients do not miss opportunities for interventions that improve their quality of life.