Professor Mayur Lakhani discusses why end-of-life care will be crucial for GP consortia to get right.
I predict that end-of-life care will be one the dominant issues for the new GP consortia. Whether GP consortia succeed or fail will also depend in part on how well they commission end-of-life care and deliver the crucial outcome of a ‘good death' for their communities. Just look at the facts and figures.
Around 500,000 people die in England each year. Of these, 70% of people would prefer to die at home yet 58% of deaths take place in hospitals. A staggering 20% of hospital beds days are occupied by end-of-life care patients who do not need or want to be there. The number of deaths is to rise to 530,000 by 2030. I know how hard it is to meet the current need for palliative care, let alone plan adequately for the future.
There is a way forward and GPs have a crucial role in this agenda. They hold the registered list, have chronic disease registers, and see nearly one million patients every working day. This gives GPs the ‘triggers' and opportunities they need to identify patients who are approaching the end of their life. What is very encouraging is that in surveys GPs consistently rate end-of-life care as being important and patients regards GPs as a critical source of support. But evidence suggests that GP ‘end of life care' registers are not comprehensive, significantly under-representing non-cancer patients.
As a guide, a GP with 2,000 patients will have approximately 20 deaths per year. The majority can be anticipated. Each GP should therefore expect to have about five deaths per year from cancer, six from organ failure – (e.g. heart failure, COPD), and about seven to eight deaths from frailty/dementia/multiple conditions. I would urge all GPs to expand their end-of-life care registers using appropriate tools to identify patients, develop anticipatory care plans and support team-based care.
One of the reasons that registers are incomplete is that GPs do not feel confident in initiating conversations with patients who are approaching the end of life. As a practising GP, I know just how hard it is to break bad news to someone that their life is coming to an end. This is a major barrier to expanding registers and hampers care planning.
As a society we are not comfortable with talking about dying and death – this has been called ‘the last great taboo'. People do not talk about dying: 70% of people have not talked about their own death with anyone at all even if they knew that their life was coming to an end. Furthermore only 5% of GPs have written a living will, 42% have discussed organ donation and 23% have discussed their funeral plans.
Dying matters, a coalition set up by The National Council for Palliative Care – the umbrella charity for end of life care, is tackling this reticence. It aims to change knowledge, attitudes and behaviours towards dying, death and bereavement, and through this to make ‘living and dying well' the norm.
As part of this work, Dying Matters has undertaken a project with GPs to examine how best to support GPs when discussing dying and death. Nearly 60 volunteer GPs from 25 practices participated in the project. A GP from each project attended a training workshop on end of life care communication skills and shared the learning with their practice colleagues. GPs were asked to maintain a record of their conversations with patients, and practices were also invited to conduct after-death audits. The results as assessed through patient and GP questionnaires and the record sheet have been very encouraging.
Confidence in initiating end-of-life conversations increased significantly. Pre-pilot 60% of GPs were not confident initiating conversation about dying, but post-pilot, 86% and 90% rated themselves as ‘confident' or ‘very confident' once conversation was underway. 80% of GPs found the supporting leaflets very helpful. Conversations between GPs and patients resulted in actions to support a good death. What I found as the most inspiring message is that, despite the initial fears that many GPs had about starting such conversations, nine out of ten patients willingly continue the conversation once raised.
The results clearly show that with the right support GPs can make a huge difference. I am confident that GPs will rise to the challenge. It is also an early win-win for GP consortia aspiring for pathfinder status because it fits well with the NHS QIPP (quality, innovation, productivity and prevention) agenda, improving quality and productivity by supporting GPs with advance care planning and avoiding inappropriate hospital admissions.
Central to this, is to improve confidence in communication about end-of-life care issues and to become more comfortable in talking about death and dying. Dying Matters offers support in this area that clearly works.
Professor Mayur Lakhani CBE is a practising GP and chair of The Dying Matters Coalition and The National Council for Palliative Care, and immediate past chairman of the RCGP
For more information and to join for free visit Dying Matters. GPs can have free access to materials and posters developed for general practice.
Professor Mayur Lakhani