The story of an Article

mike stone 29/09/20 Dignity Champions forum

The story of an article

I have decided to share something, about the development of an article which is about to be published (it has gone through peer-review and the online version should appear very soon – unfortunately, probably behind a paywall), and of which I am one of the authors.

The main author – the person who did most of the work, specifically in linking together the contributions from the other three authors – is Zoe Fritz, who is a hospital doctor. Zoe is also the person whose work led to the development of ReSPECT, and it is quite well known that I do not like ReSPECT:

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/An-issue-with-ReSPECT-which-I-will-be-pointing-out-to-the-Public-Guardian/960/

The other two authors, are Alex Ruck-Keene, who is a barrister who advises ReSPECT about the law, and who is a leading Mental Capacity Act lawyer, and Robert Cole, who is a consultant paramedic and is arguably the most influential paramedic for end-of-life issues. I have ‘known’ Rob for about ten years, and I suggested that the article needed a paramedic and I suggested Rob. I had not really had much interaction with Zoe or Alex, before we wrote the paper (from here on, I will use paper instead of article).

The paper presents different perspectives, about a scenario which Rob wrote, involving paramedics in a patient’s home, when the paramedics intend to start CPR (cardiopulmonary resuscitation – the attempt to re-start a heart which has stopped beating) and the family object. Zoe has done an excellent job of describing the ‘chaos’ which currently exists around CPR in this situation, by comparing ‘the rules’ in different countries. And by pointing out that at the moment, the guidance for paramedics in the UK pushes them towards attempting CPR, even in situations when they might feel they should be leaving the patient alone to die in peace.

I was originally reluctant to participate in the paper – it took, from memory, three invitations from Zoe before I decided to write something for the paper. One of my concerns, was that Zoe might be planning to use the paper to promote ReSPECT. My other concern, was that I did not consider it would be possible to discuss the issue I am bothered by, in a relatively short paper: I still believe that, and in reality our paper is much stronger on presenting the problem, than in describing ‘the solution’. It is the description of a solution – which we effectively invite readers to consider – which I believed would not be possible in a short paper.

The scenario described in our paper, involves an elderly person who is starting to develop various health problems, but who is not yet sufficiently ill for what I will term ‘NHS end-of-life planning’ to have been put in place. The person ‘collapses’, a relative phones 999 for some help, and by the time the paramedics arrive the person’s heart has stopped. When the paramedics say they are going to start CPR, the relative protests ‘he would not want CPR – this has been discussed WITHIN THE FAMILY. And if I had known his heart had stopped, I would NOT have called 999’.

Put simply, the person was ill enough for the cardiopulmonary arrest to not be a great surprise, but not sufficiently likely to die for there to be an expectation that a GP would have some sort of end-of-life plan embedded within medical records, and it seems the person (the relative says) and the family had discussed what the person would want to happen, should he suddenly collapse.

This is what I usually write about - ‘emergency situations’ when except for the narrow specifics of the clinical situation, the family-carer or relative who phones 999 understands much more of significance and relevance than do the attending paramedics.

I think that many clinicians and lawyers, reading our paper, will think the question it poses is this:

‘How must the guidance for 999 paramedics be written, to steer the attending paramedics to make the most satisfactory decision about CPR?’

But, in reality I want readers to consider a trickier question – which hinges on what the relative says in the scenario we presented: ‘… and if I had known that his heart had stopped beating, then I would not have called 999!’.

I will use the term ‘informed relative’ to indicate those relatives who have looked at the guidance which applies to 999 paramedics, and other emergency clinicians. There are probably a relatively small number of informed relatives at the moment, although the internet makes it possible to find a lot of the guidance which applies to and is written by clinicians (perversely, it is not easy to find the guidance for paramedics – it is very easy, to find the guidance for doctors).

However, suppose that the relative IS ‘an informed relative’. The question IMPLIED by our paper – and the question I would like readers to think about – is in fact:

‘How must the guidance for 999 paramedics be written, in order for a relative who knows their loved-one does not want CPR, TO RISK PHONING 999?’

If you are certain that your loved-one would not want CPR, then it is immoral to do anything to facilitate attempted CPR: if you understood the current guidance for paramedics, then you would be aware that typically paramedics are going to attempt CPR unless ‘something in written records tells them not to’; so, as a relative you can be certain that your loved-one does not want CPR (because, as in the paper’s scenario ‘he has told me’) but you might not be sure if your loved-one’s heart has stopped (perhaps the collapse is because of a stroke, which is likely to be non-fatal – if so, your loved-one would want prompt treatment to limit the damage he would then have to live with).

This is a problem which bothered me some years ago, when I carried out a little survey:

https://www.dignityincare.org.uk/Discuss-and-debate/download/298/

To be faced with the problem of knowing two things when a loved-one has collapsed:

1) Your loved-one definitely does not want CPR, and

2) Because of an understanding of ‘NHS records-based-behaviour’ you are
aware that if you involve 999 to find out why your loved-one has
collapsed, then attending paramedics are quite likely to attempt CPR if
your loved-one has arrested

is a horrible situation for a relative to be faced with.

It is also a bad situation, for paramedics to effectively be told to not trust the word of relatives who who are shouting at them ‘don’t do that – he would not want you to do that!’.

I will close with links to ‘further reading’ which explores my ‘solution’ to this problem (the first one) and the legal issues (the second one):

https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Champions-forum/I-have-a-suggestion-for-how-family-carers-and-999-paramedics-could-be-reconciled-for-CPR-decision-making-feedback-from-family-carers-welcomed./1031/

https://www.dignityincare.org.uk/Discuss-and-debate/download/353/

Written by Mike Stone, September 2020

Twitter @MikeStone2_EoL

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mike stone 16/10/20

The paper has now been published - the link is:

https://jme.bmj.com/content/early/2020/10/15/medethics-2020-106490

At the moment if you click on the PDF icon I think it will download the paper in PDF format for you.