- Research finds GPs have insufficient awareness of Living Wills (Advance Decisions), are reluctant to initiate conversations with patients about end of life care, and have misconceptions about refusals of treatment
- Charity warns this could result in patients failing to receive personalised care at the end of life because their wishes are not sought, recorded or respected
- GP and broadcaster Dr Sarah Jarvis “saddened but not surprised” by findings; urges GPs to take up Compassion in Dying’s recommendations
GPs may be failing to support patients to plan ahead for their care and treatment due to a lack of awareness of and misconceptions about Advance Decisions, a new report from Compassion in Dying reveals today. Key findings include GPs failing to understand the legal status of Advance Decisions and charging for appointments to discuss them. The charity is concerned that this could prevent patients from receiving the care and treatment that’s right for them at the end of life.
Compassion in Dying’s research focused on GPs’ understanding of and experience with Advance Decisions – previously known as Living Wills before the introduction of the Mental Capacity Act 2005 gave them legal status. Advance Decisions are legally-binding documents that allow people to state in what circumstances they want to refuse treatment in the future, should they become seriously unwell and unable to make or communicate such decisions. The research was prompted by regular enquiries to Compassion in Dying’s information line from people reporting that their GPs had been hesitant, not confident, or unwilling to discuss or record their Advance Decisions.
Alan Moreton, 63 from Suffolk, who called the information line in 2018 after such an experience, said:
“I’d thought long and hard and decided I wouldn’t want to be kept alive if I were in a vegetative state with little or no chance of a recovery to what I consider a decent quality of life. My wife said she felt the same if she was in a similar situation and so we each made an Advance Decision to this effect. We gave copies to our sons, who fully understand our wishes, and to our GP. He said he couldn’t accept them and clearly didn’t get why we made them, saying ‘well, what if you get earache, would you not want treatment for that?’ He refused to record them on our files. Now I worry that if something does happen to me or my wife, doctors won’t know our wishes and we could end up getting treatment we don’t want.”
Compassion in Dying’s report, Advance Decisions: Uncovering what GPs need, comes after the recent legal case of Jillian Rushton, who was given life-sustaining treatment against her wishes while in a persistent vegetative state despite having a legally-binding Advance Decision, after her GP surgery failed to pass on the details of which to her medical team.
The judgment on Mrs Rushton’s case stated that “the medical profession must give these advanced decisions the utmost care, attention and scrutiny”.
However, Compassion in Dying’s new research found that:
- GPs had significant gaps in knowledge about the legal status and implications of Advance Decisions and how they can benefit patients
- GPs imposed a financial barrier by charging for appointments to discuss advance decisions
- GPs held assumptions that conversations about death, dying and planning for the end of life would be too upsetting or difficult
- GPs had negative preconceptions about refusal of treatment
- GPs had practical concerns about the ease and process of creating and logging Advance Decisions
This research, which involved qualitative interviews with 10 GPs across England alongside desk research and analysis, follows on from a report published by Compassion in Dying in 2018 which found a worrying mismatch between CCGs’ official policies on advance care planning and the reality experienced by patients.
Usha Grieve, Director of Partnerships and Information at Compassion in Dying, said:
“It is every adult’s right to plan ahead for their care and treatment. It provides peace of mind in the present, makes it more likely that people will get treatment and care that’s right for them in future, and helps to avoid tragic cases like Paul Briggs and Mr Y. But what is clear from our experience is that, in practice, people face significant barriers in doing so. Worryingly, our research has revealed that one of these barriers may be a person’s own GP.
“It appears that while people feel ready and able to talk about death and dying, some GPs do not. GPs should be supporting their patients to think about their wishes and make decisions ahead of time, not attempting to charge for these appointments or putting off conversations because they assume it will ‘open up a can of worms’, as one doctor put it. However, we also recognise that GPs are under immense pressure and we want to offer our support. We are committed to working collaboratively to help ensure GPs are supported to play their part in delivering personalised end-of-life care for their patients.”
Compassion in Dying encourages GPs to signpost patients to its information line and the charity is due to pilot a tailored package of support to two GP Primary Care Networks which includes training for staff, awareness-raising for patients, and white-labelling of its Advance Decision form. The charity is also developing bespoke online and offline resources on Advance Decisions for GPs.
Compassion in Dying’s other recommendations include committing to a culture change towards personalised care and away from paternalism in healthcare; encouraging and supporting people who want to plan ahead; recognising opportunities where Advance Decisions may benefit people; implementing clear polices not to charge for Advance Decision discussions; ensuring Advance Decisions are shared with other healthcare professionals and hospital and ambulance trusts; and signing up to The Daffodil Standards, developed by the RCGP and Marie Curie.
Dr Sarah Jarvis, GP and broadcaster, said:
“I am saddened but not surprised by these findings. There is too little focus and training on end of life care for GPs, including advance care planning, and this must be addressed. With take-up of Advance Decisions already low, it is worrying to think GPs might actually be contributing to rather than ameliorating the problem. GPs can and should play a pivotal role in empowering their patients to think about and record their wishes for future treatment, but it is no secret that GPs are already overstretched. This offer of support from Compassion in Dying is very welcome and I urge GPs and practices to make use of it, for the benefit of them and their patients.”
Dr Alison Threlfall, Partner GP at Testvale Surgery in Southampton, said:
“This timely research highlights that as GPs we need to improve our understanding of end of life care in order to better support patients with advance care planning, the benefits of which are well documented. We are trained to juggle competing demands on a daily basis so need to prioritise time to open discussions with our patients about their future care and to know how and where to signpost for further information as part of both our duty of care and best practice. This report gives us very useful feedback focusing on the positive steps that could be taken by practices, including signing up to the Daffodil Standards, to enable the best experience for people nearing the end of life.”
The report, Advance Decisions: Uncovering what GPs need, can be found here: https://compassionindying.org.uk/wp-content/uploads/2019/08/CID_ADVANCE-DECISIONS-GP-REPORT.pdf
For more information and interview requests please contact Ellie Ball, Media & Campaigns Officer at Compassion in Dying, at email@example.com or 0207 479 7732 / 07725 433 025
Notes to Editor:
Advance Decision (to Refuse Treatment, also known as a ‘Living Will’): a legally binding document which allows an individual to record any medical treatments they do not want to be given in future, in case they later lack capacity and cannot make or communicate such a decision.
A 2014 YouGov poll commissioned by Compassion in Dying found that while 82% of people have strong feelings about what treatment they would or would not want at the end of life, just 4% have made either an Advance Decision (AD) or Lasting Power of Attorney (LPA). [YouGov Plc. Total sample size was 1,972 adults. Fieldwork was undertaken between 28th– 29th October 2014. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+)].
About Compassion in Dying:
We can help you prepare for the end of life. How to talk about it, plan for it, and record your wishes.
We help people through our free information line, publications and resources, and through our work with diverse communities. We specialise in supporting people to make Advance Decisions (‘Living Wills’) and to talk about their goals and priorities when living with a life-changing illness. Our free MyDecisions website helps people to record their wishes for care in a legally binding way.
Have any questions? Talk to us.
0800 999 2434