Who wants to talk about it? The future delivery of end-of-life care

Death and dying remain one of the last taboos in our society. Most people would imagine that their GP would be able to talk to them about the care they want at the end of their lives. But in fact more than two-thirds of GPs have not discussed preferences for their own end-of-life care with their doctor, family or friends – giving reasons such as 'death feels like a long way off' or that they 'have just never thought about it'.

Of those questioned in a survey by The King's Fund, 63 per cent of GPs believe that their personal attitudes towards death will inevitably affect the advice they give patients about end-of-life treatment, with almost half admitting they would welcome some support to improve their ability to talk to patients about death and dying.

These results are unexpected – especially as 76 per cent of GPs saw end-of-life care as an integral part of their job – and patients might find it surprising to learn that even their doctors are reluctant to talk about these issues.

Our research on end-of-life care has shown that avoiding such conversations with patients may impact on whether GPs refer patients to other services in the community, services that would support them and their carers in their homes and avoid unnecessary hospital admissions. Our research also shows it's important that GPs and other health care providers feel comfortable and confident talking to patients about such preferences to ensure high-quality care.

This week we are hosting a national summit to open up discussion on the subject. We're looking forward to meeting with a range of influential stakeholders, communicating openly about some of these challenges and working together to overcome them.

If health professionals are reluctant to communicate about their own end-of-life care preferences – not just those of their patients – then enabling them to have clear and informed discussions on death and dying will be a major step on the road to improving end-of-life care in England.

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Comments

#87 Allan Sweeney

Yes, I'd like to talk about it! When/where is the national summit?

#88 Rachael Addicott

Thanks for your comments Allan! And I'm encouraged by your enthusiasm. We held the national summit last week with a very small group of invited policy-makers, clinicians, service managers and academics. The discussion was extremely fruitful and productive, and we were able to identify 10 critical actions for taking forward the implementation of the End of Life Care Strategy. The report of the summit, and the 10 critical actions, will be published in December 2009 and available on The King's Fund website.

#96 James Cave

I'm not reluctant, its just something that has not come up, and that is the problem GPs have with patients. When is the right time? Just after diagnosis of a cancer when the experts are saying it will be cured? Before people fall ill? (and then how does a GP get to see people at that time?) At a certain age? "Thank you for popping in.."

Oh how I wish we had some primary care based research in this area than limited headline grabbing stuff from people in ivory towers who have limited experience and understanding of general practice.

#99 Rachael Addicott

Thanks very much for your comments, James. It's really useful to get your views on this topic, and an insight into some of the questions that GPs are facing. These are clearly very difficult conversations to have, and there are a range of reasons why they are difficult.

I agree with you completely that more research is needed in this area, which can provide information and support to all health care professionals, including GPs in the coordination and delivery of end of life care. I'm pleased that a dialogue is starting, which is raising some of the common concerns and challenges in this area.

#548176 Mike Stone
Retired Non Clinical
None

In the context of this article, I recently (summer 2016) asked the people 'promoting' a national conversation about dying, something which might be of interest. I've already posted this on Marie Curie:

The 'pledge' from the government, included the promotion of this much-written-about, but so far hard-to-locate, 'National Discussion about Dying'.

I copied in the Department of Health, when I asked NCPC about that conversation (e-mail 8 July) . NCPC have not yet replied to me, but the DH did (29 July). My question, and the reply from the DH:

Dear Sir or Madam,

I had a quick glance over ‘Our Commitment to you for end of life care: The Government Response to the Review of Choice in End of Life Care’ yesterday, and I would like clarification about something.

Under ‘To take this forward’, on page 32 one can read:

‘the DH and NHS England will work with voluntary sector partners to raise public awareness nationally of issues around death and dying and the importance of individuals making end of life care plans in advance. This will include support for the Dying Matters Coalition and Campaign, which is run by the NCPC. The Coalition leads on initiatives to promote a national conversation about death and dying.’

Can I have some details, about:

‘The Coalition leads on initiatives to promote a national conversation about death and dying’

My question, comes in three parts.

1) Is the intention to promote one or more conversations between individuals, as opposed to between ‘representatives of organisations or professions’ ?

2) Assuming the answer to 1) is ‘between individuals’, is the intention to promote/organise a forum within which all types of individual – patients, nurses, healthy young people, family carers, lawyers, police officers, current and also bereaved family carers, etc – can interactively converse with each other on the same forum ? So ‘no discussions within ‘silos’’ - ‘one big discussion’ ?

3) If the answer to 2) is ‘yes’, will professionals be exempted from any obligation to ‘express my employer’s view’ and will they be able to say what they think, as working professionals but as ‘open and honest individuals’ ? Obviously laymen do ‘speak as individuals’ - this ‘conversation’ will not work, if the very professionals who are most deeply embedded, and possess the greatest understanding on the professional side, are prevented from expressing their own, honest and personal, opinions. It is quite noticeable on the Nursing Times website, how many people post comments under ‘Anonymous’ - nurses are clearly worried about ‘saying something my bosses wouldn’t like’.

I find that ‘professionals cannot speak honestly’ issue is problematic, when I myself try to discuss end-of-life and the MCA. A few months ago, one of my professional contacts sent me an e-mail from a personal e-mail address:

Dear Mike,

I just wanted to write to you as ‘me’ rather than in a way that might be seen as representing the XXXXX … I’m very glad that the thrust of your thinking is around improving practice for the future: we can deplore poor practice in the past, and, though unable to change what happened, it’s good to use this knowledge to improve the experience of people in the future.

I would suspect, and this is only my personal opinion, that many of your correspondents see the sense and value in your suggestions, as do I, but may be inhibited by their public persona and hence sometimes reply stiffly or without passion. … With very best wishes for your continued energy and the logical approach you bring to identifying areas for improvement’

This is a comparatively ‘newish’ contact – after a while, everyone drops ‘Dear’ and many people drop ‘Mike’ and just start the message - but this conversation (which has to be a conversation – and not the thing ‘the NHS’ typically arranges, which is a consultation) needs to include ‘the professional experts’ and they must ‘be allowed to speak their minds’ if you honestly want to facilitate the maximum learning of all involved,

Regards, Mike Stone

PS I await enlightenment on the answers to my three questions above, with some eagerness – I have been ‘banging on’ about the absence of this National Conversation about Dying ever since the Neuberger report stated that such a conversation is necessary.

The reply from the DH was:

Dear Mr Stone,

Thank you for your correspondence of 8 July about the National Conversation about Dying. I have been asked to reply.

The intention behind the National Conversation about Dying is indeed to promote conversations between individuals, rather than representatives of organisations or professions.

These conversations may be between two or more people, with the opportunity to discuss in a variety of forums, which might be face-to-face or online. These conversations might also be based on community settings, or wider national discussions such as Dying Matters Awareness week.

With regard to your question about professionals being obliged to express their employers’ views, people are entitled to state their own personal views. However, if expressing personal views on social media, people must make clear that it is their personal view being expressed. Any conversations taking place in the context of a professional/patient relationship would need to involve an honest discussion to support and advise the patient concerned.

I hope this reply is helpful.

Yours sincerely

I don't think 'conversations might be happening' is quite the same things as organising a National Conversation about Dying - where, within a single forum, everyone is talking to everyone else (not 'silo discussions' of doctors talking to doctors, angry bereaved relative talking to each other, 999 paramedics talking to other 999 paramedics, etc).

I still cannot find the forum, within which this national conversation is talking place ?

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