As highlighted by the National End of Life Care Intelligence Network last year, the complex needs of many patients who die from liver disease mean that they are more likely to die in hospital; in 2009 more than two-thirds died in hospital, compared to 55% of all deaths from any cause.
In contrast to other major causes of deaths, deaths from liver disease have been increasing – it is now the fifth most common cause of death in the UK. Liver disease disproportionately kills people at a much younger age – 90% of people who die from liver disease are under 70 years old and more than 1 in 10 of deaths of people in their 40s are from liver disease.
Referring to the National End of Life Care Intelligence Network report, Claire Henry, director of the National End of Life Care Programme, highlighted the challenges of providing good end of life care for this group of people: “Clinicians caring for people with liver disease need to be having conversations with them about end of life care. This is exceptionally challenging for those with liver disease, who are often younger, come from ethnically diverse or deprived backgrounds and may feel stigma associated with the disease. It’s additionally complicated for those dying of alcohol-related liver disease, who may also have mental health or drug dependence problems and little family or social support. These factors make good communication about end of life care so important.”
Getting it right
The new report from NHS Liver Care and the National End of Life Care Programme examines the challenges of delivering good end of life care for people with liver disease, and suggests that a culture change is required to help healthcare professionals deal with the issue openly and pro-actively, to ensure that patients and their families get the support they need as early as possible.
It highlights the importance of integrating active medical management with palliative and supportive care, allowing active treatment of medical crises while preparing the patients, those close to them and the clinical team for the possibility of death.
The report looks at how the pathway described in the Department of Health’s End of Life Care Strategy can be applied for patients with advanced liver disease. It covers the assessment, planning and coordination of high-quality care in different settings, as well as how to talk about these things with patients and relatives, pastoral needs and care after death.
Dr Elizabeth Kendrick, co-author of the report and Chair of the End of Life Clinical Innovation Team at NHS North East, said: “Deaths due to liver disease are rising, and it is a significant issue for all health care providers. Identification and management of the end of life period in liver disease is particularly challenging. Leading clinicians have worked to draw together evidence, opinion and examples of best practice in end of life care, to focus on providing better care for patients with liver disease approaching end of life. We hope this document will help clinicians, educators, commissioners and patients to work towards improvements in service provision and outcomes.”
‘Getting it right: improving end of life care for people living with liver disease’, and the National End of Life Care Intelligence Network report on ‘Deaths from liver disease’, can both be downloaded from the NHS Liver Care website.
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