The story of an Article
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:
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/download/353/
Written by Mike Stone, September 2020
Twitter @MikeStone2_EoL
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.
CPR in the community: further discussion
I was one of the authors of a recently-published paper about cardiopulmonary resuscitation (CPR) in the community – the paper examined the interaction between 999 paramedics and ‘family-carers’ (the relatives or friends who called 999 – sometimes called ‘relatives’ both here and in the paper, but not necessarily formally relatives).
The paper can be found here:
https://jme.bmj.com/content/early/2020/10/15/medethics-2020-106490
I have been discussing our paper with various people – it was intended to provoke discussion – and there seem to be differing views on some issues, and in this piece I will present my views on those issues. Prominent among these ‘disputed’ or ‘contentious’ issues, are the following three things:
1) Is the DNACPR Justification Hierarchy on pages 30/31 of my PDF here
https://www.dignityincare.org.uk/Discuss-and-debate/download/317/
correct, or flawed? I accept that it is incomplete (for example, the section on Welfare Attorneys needs further explanation – it would be wrong to conclude from what I wrote, that if there are several attorneys with Joint & Several authority over CPR that I am saying they all need to express an agreed decision: if only one attorney is contactable, that attorney’s opinion is ‘legally binding’ {but if there are two such attorneys, and they give conflicting decisions – one saying withhold CPR and the other saying attempt CPR - then I believe that a clinician should attempt CPR}. But I consider it to be legally correct and coherent, as a JUSTIFICATION hierarchy.
2) Is a verbal refusal of CPR during ongoing contact the most legally-valid reason for DNACPR? In other words, is the ordering for 1 – 3 in my hierarchy correct? There is a view, that a written advance decision (ADRT) sits at the top – I consider that to be incomplete thinking.
3) There is a complex discussion, which hinges on the ‘duty of care’ which attending paramedics are subject to, and the situation of family-carers who summoned the paramedics: the problem cannot be easily summarised, so if interested you will need to read my analysis.
The issues are described in the PDF you can download from this post.
As ‘hints’ I will point out that consideration of point 2) above, hinges on the fact that while an ADRT refusing CPR must be written in order to be valid, it is misleading for people to write [as they usually do] that ‘a valid and applicable advance decision refusing CPR is legally-binding’. The complication rests on section 25(4)(c) of the Mental Capacity Act (MCA). And exactly when a person considering attempting CPR, could be as-certain-as-possible that section 25(4)(c) is not a consideration.
The consideration of 3) above, hinges on analysis of the situation not starting when a relative has called 999 and paramedics have attended – but instead starting at the time when the relative is considering whether to call 999 or not [which I consider we must logically regard as a best-interests decision].
I should also point out, that both of my parents had died before I first read the MCA. And without any knowledge of the MCA, I was firmly of the opinion that it was not for me to decide what my parent wanted: my role was to to try and support his/her decisions. So, if it had been made clear to me (as it was while my mum was dying) that a parent did not want CPR, then my role was to make sure that nobody attempted CPR. As it happens, I consider that the MCA supports that position – if my parent has made it crystal clear to me that he or she would never want CPR, then my efforts must be to try and prevent anyone from attempting CPR. At its simplest, in this scenario, the family correctly did not call anyone until the father had died:
My 87 year old father suffered with chronic heart and renal failure, he spent years going in and out of hospital at the GP request. He had decided that enough was enough, he didn‘t want to have more tests, catheters, cpap so took the decision not to allow mum to call an ambulance when he was nearing the end of his life. He died at home surrounding by his family.
Posted on Nursing Times online, ca 2012, by someone I think was probably a nurse.
Associated files and links:
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Follow on discussion of a JME paper about paramedics relatives and CPR
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very thought provoking as usual Mike, Please let us know when the article /paper is published.
https://jme.bmj.com/content/early/2020/10/15/medethics-2020-106490
The paper was published online on 15 October. It has a typo in the final sentence (it should say 'the clinicians and the relatives' instead of 'the clinicians and the patient').
At the moment, I think you can read the full paper and download the full paper if you click on the PDF icon. Be quick - it might turn into a pay-to-access paper.