How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners’ perceptions and experiences

BACKGROUND: Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners’ (GPs) perceptions of their role in managing end-stage liver disease. OBJECTIVE: To explore GPs’ experiences and perceptions of how primary care can enhance end-of-life care for patients with liver disease. DESIGN: Qualitative interview study, thematic analysis. PARTICIPANTS: Purposive sample of 25 GPs from five regions of England. RESULTS: GPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients’ social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area. CONCLUSIONS: End-of-life care for patients with liver disease merits attention from both primary and secondary care services. Development of care pathways and equitable access to symptom relief should be a priority.