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“The decency of human nature can still prevail over protocol”


OK, so this one’s personal. I lost my mum earlier this year. 


She was 91, which is a good age to reach, and she was wholly independent up to the day she died – in no small part because of a deeply held fear of doctors and the very word “hospital”.

She raised me on her own and I am an only child so inevitably we were very close. Hers was not a bad death (it was quick, it was without pain and it was at home) and although it was recorded as “unexpected”, I had been looking after her up to a few hours before she died and so, for me, it was not a complete surprise. As such we were able to have a good conversation before she sent me home for a few hours to “see to your girls and come back tomorrow or the day after”.

I was unspeakably sad and, in truth, I still am. Christmas was her favourite time of year and I don’t like the fact that I will have to buy my own Chocolate Orange for the first time in 50 years.

However in the process of rearranging the internal furniture in the way one does when grieving, I wanted to make note of something and this seemed an appropriate place to do it.

My mum collapsed at home. The paramedics came and worked on her for far longer than they should. Apparently they got a faint pulse after 40 minutes. I spoke to them – they were kind, thoughtful, articulate and professional. I asked them to stop now. They said they were not allowed to stop; protocol demanded they continue. The man in charge said it if was his mum he would feel the same. But sometimes rules trump clinical expertise.

I choose to believe my mum did not know what was happening at that time.

A protocol around “notifying the next of kin” (me) was then put into place. It resulted in two very nervous and fresh-faced police officers arriving at my house nine hours later – at 3.25 in the morning – to inform me of my mother’s death. Bless them. Lovely boys. Hadn’t had any “breaking bad news” training. Anyway, I was told I had to phone the coroner.

The following Monday I was told that, due to cuts, the coroner had a backlog of 25 unexpected deaths. “Sorry,” they said, “this may take a while”. It did.  

It took two and half weeks before he could get to my mum’s case. In part this was because  there were too many other dead people and in part it was because of “some administrative errors by our office”.

“So what is your point Mark?” you may ask. Well my point is as simple as it is probably pointless. Throughout the whole process people were kind. Everyone (with one irrelevant exception) with whom I spoke was decent, engaged and sympathetic. And everyone had to find a way of being those things despite the processes, protocols, economics and rules that formed the backdrop to their work.

We seem to me to have designed a set of systems that exist to “protect” us from human error – and yet those very systems and protocols are often counterintuitive and deskilling.

I tend to choose naivety over cynicism but I can’t help but think the strongly ingrained habit to design protocols for all circumstances can be self-defeating. Protocols can serve to diminish and hide the human qualities that we are so anxious to see valued and enacted. Maybe I am overly protective of those  qualities – generosity, kindness and a thoughtful attention to others. But that’s because my mum taught me these are the things that make people rich and the things we should always treat with the most respect.

Mark Radcliffe is senior lecturer, and author of Stranger than Kindness. Follow him on twitter @markacradcliffe


Readers' comments (4)

  • michael stone

    I'm not clear, about whether Mark was with his mum when she collapsed, or whether he found her collapsed.

    However, this piece by mark, is very much 'on the theme of' my ongoing end-of-life debate with 'the NHS'. And I thank mark for writing it.

    What Mark might not be aware of, is that even if he had been with his mum when she collapsed, and even if his mum had created a written Advance Decision refusing CPR, 999 paramedics would probably have ignored it and attempted CPR.

    And if Mark had been his mum's welfare attorney, with powers over life-sustaining treatments, and Mark had told 999 paramedics that he considered not attempting [or stopping] CPR was in his mum's best interests, the paramedics would quite possibly still attempt CPR.

    That behaviour, simply isn't satisfactory.

    I will be pointing a few people at this piece: the Association of Ambulance Chief Executives (currently working on new CPR guidance), Bee Wee (NHS England EoL lead), the RCGP (currently looking at an analysis of mine about home death, and whether the terms 'expected' and 'unexpected' are justifiable for known EoL or very elderly people), the group which creates and publishes the EPaCCS core guidance (who I also happen to be discussing certain issues with at the moment, and because EPaCCS will inevitably impinge on the sort of behaviour Mark experienced) and also my own CCG (which is developing a local EPaCCS at present).

    I'm not going to explain the acronyms - readers who understand this area of healthcare behaviour, will probably know what they are.

    And if I can find his e-mail address - which so far, I've failed to do - I plan to ask Mark if he wants to 'join me' in those e-mails.

    My own experience - and my mum also 'avoided doctors' - which got me involved in this end-of-life stuff, can be found a little way in to my piece at:

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  • Thank you for writing this your pieces are always pertinent and I wish you were Prime Minister. I know it's not the point but perhaps one of your daughters will give you a chocolate orange for Christmas. Thinking of you in your grieving.

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  • michael stone

    I have drafted the part of my e-mail (see my earlier post, yesterday) which will discuss Mark's piece, and I will now publish it here: the e-mail will cover certain other issues, related to EPaCCS and EoL Home Death policies, and also certification/verification behaviour, but those are not in this part.

    My first piece of analysis, concerns:

    'My mum collapsed at home. The paramedics came and worked on her for far longer than they should. Apparently they got a faint pulse after 40 minutes. I spoke to them – they were kind, thoughtful, articulate and professional. I asked them to stop now. They said they were not allowed to stop; protocol demanded they continue. The man in charge said it if was his mum he would feel the same. But sometimes rules trump clinical expertise.'

    In particular it concerns 'I asked them to stop now. They said they were not allowed to stop; protocol demanded they continue. The man in charge said it if was his mum he would feel the same.'

    There are three 'plausible interpretations' of that:

    1) The senior paramedic could understand why Mark was upset about the CPR attempt, but viewed this as 'because it was all so personal for Mark';

    2) The senior paramedic could understand why things looked different from his own and from Mark's perspective;

    3) The senior paramedic did not 'honestly believe his protocols make sense' - in other words, something aside from 'the sanity of it' was making the paramedics attempt CPR for 40 minutes, when 'we paramedics do not really think we should be behaving like this'.

    The first one, is too difficult to analyse, and involves things such as 'potentially upset relatives', etc.

    The second one, is a non-trivial complication, which is always in play when guidance is created - it also results in the creation of 'perspective-biased guidance if ONLY THE PROFESSIONALS are involved in the writing of professional guidance.

    The third one, which a reader might find hard to believe, and which if true is the most unsettling and disturbing for a relative, could well be the truth - I've discussed CPR with various paramedics, and some of them are really annoyed by the guidance they are 'pushed into following'.

    Not irrelevant (to CPR behaviour in the home) is a section of the House of Commons Health Select Committee, End of Life Care, Fifth Report of Session 2014-15 The report can be found at:

    Section 106 is:


    106. The Association of Ambulance Chief Executives in their written evidence state that a unified approach to DNACPR documentation is crucial for paramedics and other ambulance clinicians when a swift and difficult decision needs to be taken to allow a person to have a dignified death. They comment:

    Without a DNACPR form or information that establishes that a person is at the end of life, resuscitation may be the course of action decided upon by the clinician that may be later seen as unethical, inappropriate and most importantly not what the patient would have wished for.
    As ambulance services we would strongly support, recommend and offer to assist with work to develop a universally recognised DNACPR form that can be electronically integrated into record systems across England and Wales.103


    However, I would point out (but not explain here - too lengthy and intricate, and not so closely connected to Mark's article) that EPaCCS and DNACPR Forms, are not the entire solution, to this particular problem. And EPaCCS in particular, has the potential to make the situation worse, and not better.

    A consideration of the clinical consequences of attempted CPR, and especially of CPR 'attempted for 40 minutes' on a 91 years old woman, is now needed.

    Mark says '... and although it was recorded as “unexpected”, I had been looking after her up to a few hours before she died and so, for me, it was not a complete surprise' - so, had Mark noticed that in a general way, his mum 'was becoming frail' (the other possibility, is that Mark noticed some sort of deterioration in his mum, prior to the arrest). Either way, we are talking about a 91 yr old woman.

    Some medics who work with the elderly, argue that CPR is an unsatisfactory treatment for 'the frail elderly', and that it should not even 'be on offer'. I half agree with them - but the half we disagree about is pretty fundamental. In any event, the likely consequences of CPR for 40 minutes in a 91 yr old woman include broken ribs and possible internal damage, and most 91 yr old people are much less likely to recover from 'traumatic events' than young people: even a couple of minutes of chest compressions would be a traumatic event in a 90 yr old, let alone 40 minutes.

    So, now we move back to the start of Mark's piece;

    '... she was wholly independent up to the day she died – in no small part because of a deeply held fear of doctors and the very word “hospital”.'

    Would Mark's mum, have chosen 'leave me alone to die' if the alternative was a future when she was unable to continue 'living independently' ?

    To go back to the AACE comment to that committee of MPs, would this CPR attempt by the paramedics have 'most importantly not [been] what the patient would have wished for' ?

    And - because it seems to me to be the pertinent question - who could answer that question ? Surely Mark, who 'knew his mum', and NOT the 999 paramedics.

    There is something which is going on, MUCH MORE DISTURBING than Mark's experience - I'll explain.

    If Mark's mum had considered whether she would have wanted attempted CPR, and decided 'no, I certainly wouldn't', then she might have done one, or both, of these things:

    a) Created a written Advance Decision refusing attempted CPR

    b) Got Mark appointed as her welfare attorney and given him powers over all treatments, including life-sustaining treatment such as CPR

    What is truly disturbing, is that Advance Decisions refusing CPR, are typically ignored by 999 paramedics if patients arrest at home outside of 'known end-of-life care' (ignoring the ADRT is illegal, in my opinion).

    Similarly, even if Mark had been a suitably-empowered attorney, and had called 999 and told paramedics 'if my mum is in arrest, don't try CPR - but if she has collapsed but not arrested, tell me what the clinical situation seems to be' the paramedics are quite likely to ignore Mark, and to attempt CPR (this time, not only 'illegal' but also 'might result in a court case against the paramedics' - technically an Advance Decision would rank above the best-interests decision of an attorney, but it is hard to pursue a court case, if you are dead).

    And, this is perhaps the most disturbing, of everything.

    Suppose that Mark's mum had tried to prevent attempted CPR, by creating an Advance Decision and/or by getting Mark appointed as her attorney. And suppose that the 999 paramedics still attempted CPR, she was 'successfully resuscitated' and rushed to hospital. This 'successful' CPR results in a week of two of life, in a hospital bed and in some distress, but Mark's mum is able during that bit of extra life, to ask Mark 'Why was I resuscitated - I had told everyone, to just let me die in peace. This is EXACTLY what I didn't want to happen to me !'.

    Now, I suspect that 'Mark would feel awful - and 'be very angered 'with the behaviour of 999''. But would the paramedics 'see that' - don't they tend to 'disappear from the scene' as soon as the patient is in the hospital ?

    I imagine that very few people, will have got this far - but, if anyone has, and wants some 'further reading', then a selection of my ramblings is:

    An analysis of the Mental Capacity Act and of best-interests decision-making:

    An analysis of 'expected' and 'unexpected' end-of-life home death (this is what the RCGP is currently thinking about, as mentioned in my first comment):

    The following pieces, are about CPR:

    The final one of those, I titled 'The piece in the Daily Mail is confused' - which will probably meet with some approval, on this website.

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  • michael stone

    I've found Mark's contact address.

    There is also something I see in Mark's piece, which I felt after my mum's death [and the fiasco which followed].

    Neither of us, seemed to blame the 999 staff, for their behaviour - but, we both seem to consider they were doing 'unsatisfactory things'. And we both, apparently consider that to a large extent, their 'protocols/guidance' are the problem.

    It is EASY to complain [to 'the NHS'] that a clinician 'is incompetent', and it is also EASY to complain that ' he did not follow the protocols'.

    It is however VERY DIFFICULT and HUGELY FRUSTRATING if your complaint is 'they followed their protocols, but the protocols are WRONG !!!'.

    I am very aware of this - I have, in fact, been 'complaining that the protocols and guidance are flawed' for about 5 years, and making progress verges on the impossible. And, it is even harder to complain about police behaviour, than about clinical behaviour.

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