Marie Curie works with GPs to improve end-of-life care

by Dr Phil McCarvill
Head of Policy

Phil-McCarvil_300x300As people live longer, increasing numbers of patients have long-term, advanced conditions requiring more complex support towards the final stages of life.  The majority of people die from non-cancer conditions such as heart failure, Chronic Obstructive Pulmonary Disease (COPD), dementia, frailty and multiple co-morbidities. Yet, these conditions are not always identified early enough and their course of decline can be erratic, unpredictable or protracted, often requiring complex health and social care support, which can be challenging.

We want the best end-of-life care for everyone and this means ensuring that people receive the care and support they need to help them live as well as they can, for as long as they can – this also means working effectively with GPs.

Almost everybody has a GP, and they play an essential role in caring for people at the end of their lives – especially those who are cared for at home.  GPs have a special relationship with not just their patients but also with the patients’ carers and the people close to them.

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A recent report from Marie Curie - Death and Dying: Understanding the Data (PDF 1MB) – painted a complex picture of end-of-life care, with big differences in access, experiences and outcomes for people who are terminally ill.  It also showed that many people who die in hospital have no medical need to be there and do not want to be there.  We are calling for a well-planned, system-wide programme to shift the focus and ultimately resources away from acute hospitals in order to provide greater support for people in care homes, hospices and their own homes.  And we know that GPs have an important role to play in improving end-of-life care across these different settings.

This is why Marie Curie and the Royal College of General Practitioners (RCGP) have joined forces to improve the end-of-life care provided to patients by GPs.  One of the first steps of the three-year programme are the appointments of Dr Peter Nightingale, a new Clinical Lead for End-of-Life Care, and Dr Adam Firth, RCGP Clinical Support Fellow for End-of-Life Care, who will work part-time for the Royal College and Marie Curie, while continuing their other general practice day jobs.

Dr Nightingale will lead a programme of work that will improve primary care provision for patients nearing the end of their life, including vulnerable patients such as those with dementia and learning disabilities. The programme will prioritise advanced care planning, patient choice of place of death, pain management, health inequalities and commissioning issues.

Proposed activities include developing new clinical guidelines for GPs and primary care teams, online toolkits and support,  promotion of primary care training in the area of end-of-life care and identifying and promoting best practice, as well as influencing and supporting clinical commissioning groups in end-of-life care planning.

One of the most exciting things about this project is that it will cut across several other major themes which the Royal College already focuses on, including dementia, cancer, rare diseases and COPD.  This marks the first time that the RCGP has worked on a clinical priority across multiple conditions, rather than focusing on one disease area.

Ensuring better pain control for patients who are being cared for in their home is likely to be a high priority, as is identifying those with a terminal illness earlier and planning ahead.  Planning ahead involves recognising those who might possibly be nearing the final year, months or weeks of life, and planning proactive, well-coordinated care that supports the wishes of patients. This enables more people to live and die as and where they choose, and helps reduce emergency hospital admissions.

We see this partnership as a defining moment in improving end-of-life care and in helping GPs to deliver the best possible support to people with end-of-life needs.