Introduction Liver disease is the third largest cause of premature death in the United Kingdom (UK) and currently accounts for 2% of deaths in England, but there is little strategy to improve care for those dying from it, as well as a lack of research in this area. Understanding of the views of health care professionals (HCP) on how care can be improved for patients dying from cirrhosis is poor.
Aim To conduct a national survey of primary, secondary and tertiary care providers to explore current attitudes and practices, to identify future training needs, ideas for service improvement and research priorities.
Method An online questionnaire survey was emailed to a maximum of 6,181 HCPs working in hepatology and gastroenterology (liver), general practice (GP) and specialist palliative care (SPC) across the UK.
Results 517 HCP responded: 195 from liver, 46 from GPs and 273 from SPC (response rates 4%, 23% and 10% respectively; overall response rate 8%). Nearly all liver and SPC professionals felt that SPC had a role in the care of patients with cirrhosis. Liver professionals tended to refer to SPC whilst patients were in hospital but overall numbers were low, with only 14% (22/161) and 6% (9/61) of liver professionals referring more than 20 patients/year from in-patient and out-patient care respectively. Patients with cirrhosis only made up a median 1% of the SPC workload. All HCPs wanted further training in: managing liver-related symptoms (SPC), symptom control and end of life issues (liver and GP).
Open responses were received from 221 participants. Two main research priorities were identified by all three health professional groups: better symptom control (in particular how best to manage recurrent ascites, opioid pharmacology in liver disease and optimal management of pruritus and encephalopathy), and prognostication.
Conclusion Although all HCPs recognised the important role of SPC in caring for dying patients with cirrhosis, they all needed further training and uptake of skills to improve their confidence. We recommend a focus on improved understanding of the needs of patients with cirrhosis and their families, identification of better ways in communicating with patients at risk of death, smoother links across care boundaries, and enhanced training for all staff groups.
Disclosure of interest None Declared.