by Dr Lucy Selman
Research Fellow (Qualitative Research in Randomised Trials)
Centre for Academic Primary Care
GPs are vital to the delivery of end of life care. They coordinate care, provide generalist palliative care, help prevent unnecessary hospital admissions, and, in England, commission local health and social care services. Crucially, they help shift care from hospitals to the community, which is where most people would prefer to die.
But providing good care at the end of life is not always straightforward. There’s evidence that GPs can find it challenging, and that the quality of end of life care by GPs can be problematic. The Royal College of General Practitioners and the House of Commons Health Committee therefore recognise the urgent need for evidence-based education in end of life care for GPs. However, the evidence base for GP training in end of life care is unclear, and no rigorous evaluations exist of GP end of life care training in the UK. Outside the UK, evaluations have had mixed results; a controlled trial of a palliative care training programme for GPs in the Netherlands found no significant effect on communication skills or patient outcomes.
What we did
As part of a larger study into palliative care education, I wanted to better understand how best to provide education and support to GPs regarding end of life care. With funding from Health Education South London, we conducted five focus groups with 10 qualified GPs and 18 GP trainees in the UK. The focus groups explored GPs’ educational needs, preferred learning methods, and the acceptability of different methods of evaluating their end of life care. We recorded the focus groups, transcribed them and analysed them thematically, with input from a patient and carer advisory group and a multi-professional research team.
Is education needed?
The GPs and GP trainees we spoke to confirmed that there was a need for more or better education in end of life care for GPs, due to:
- attrition of skills (especially in symptom management)
- difficulty of keeping up to date, owing to lack of exposure and reliance on palliative care specialists or colleagues
- inadequate/inconsistent exposure to care of the dying during training and in clinical practice
- widespread lack of confidence, reporting to lead to hospital admissions and poor symptom control
- the complexity of end of life care, which was perceived as emotionally and clinically challenging
What topics should education focus on?
We identified nine areas in which participants felt more education would be beneficial:
- identifying and referring patients for palliative care
- local services and resources
- local systems and frameworks
- roles, responsibilities and teamwork
- out-of-hours care
- difficult conversations (e.g. initiating discussions of palliative care) and counselling skills
- symptoms and medication
- caring for patients with non-malignant conditions
- paediatric palliative care
How would GPs like to learn about end of life care?
Participants talked about the value of learning ‘on the job’: they considered real-life experiences of end of life care the gold standard. They preferred learning through experience, working alongside specialist palliative care staff, and discussing real cases of dying patients and their families, to didactic teaching methods and e-learning.
How would GPs like their end of life care to be assessed?
GPs reported that using 360° appraisals to assess the quality of care was problematic due to bias in the selection of respondents. They also considered behavioural assessment using videoing or simulated interactions problematic, unless it was needed for a specific qualification. But they thought that self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly.
The GPs and GP trainees we spoke to felt that GPs needed more education and support in end of life care, especially in the management of complex clinical care and in counselling patients and family members. But while there were clear areas in which they wanted education, they didn’t want it to be provided through more formal training courses – especially if these used (yet more) simulated interactions and online learning. What they really wanted was mentoring, peer-support and opportunities to learn from and alongside end of life care specialists. The challenge is developing and implementing interventions and systems that enable this to happen.
Evaluation report: Somerset delivering choice programmeNews story: Researchers uncover the factors associated with hospital deaths in the oldest old
Journal articles: Electronic palliative care coordinating systems (EPaCCS) may not facilitate home deaths: A mixed methods evaluation of end of life care in two English counties. Wye, L. et al. Journal of Research in Nursing 2016, 21(2), 96-107.
What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life? Results from a realist evaluation of new palliative care services in two English counties. Wye, L. et al. BMJ Palliative Care 2014, 13:37
Impact of the Marie Curie Cancer Care Delivering Choice Programme in Somerset and North Somerset on place of death and hospital usage: a retrospective cohort study. Purdy S. et al. BMJ Supportive and Palliative Care 2014
“Earthly Angels”? A qualitative study of the domiciliary care worker role in meeting the needs of families caring for those dying at home. Percival J. et al. Palliative and Supportive Care. 2013; 1-9.