End of life care for liver disease: A qualitative study with general practitioners.
Liver disease is the third commonest 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 singled out as an area where care could be enhanced, particularly around the discussion of palliative care needs with patients, the inclusion of patients on palliative care registers, and improving communication between primary and secondary care. Little is known about general practitioners’ perceptions of their role in managing end-stage liver disease. This study aimed to explore GPs’ experiences and perceptions of end-of- life care for patients with liver disease.
This study employed qualitative methods, involving semi-structured telephone interviews with GPs from five geographical areas within England. The NVivo 10 software package was used to manage the data. A thematic analysis was conducted. The analysis was iterative, with data collection and analysis running concurrently throughout the study.
Twenty five GPs were interviewed. The majority had been qualified as GPs for five or more years, but few (4/25) had any specialist hepatology or gastroenterology training or experience. 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.
This study highlights that end-of-life care for patients with liver disease requires attention. Expertise in symptom control is essential, but patients and families also need sensitive and practical responses to their psycho-emotional and social concerns. Some of the barriers to GP care for patients with end-stage liver disease may be addressed by collaboration and communication between liver specialists and primary care. Development of care pathways, the availability of specialist advice and equitable access to symptom relief should be considered as a priority.