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Down's sufferer takes action over DNR

A man with Down’s Syndrome is taking legal action against a trust after a do not resuscitate (DNR) order was put on his file without the knowledge of his next of kin.

The 51-year-old man, referred to as AWA, was admitted to the Queen Elizabeth the Queen Mother Hospital in Margate, Kent, on September 7, last year.

AWA, who has dementia and is fed by a tube through his stomach, stayed at the hospital until September 26.

But despite daily visits by his family and carer and meetings between his parents and the clinicians, it was only when AWA returned to his residential home that the DNR order was discovered.

It instructed staff not to perform resuscitation in the event of a cardio or respiratory arrest with no provision of review.

It also gave his disability as the sole reason for its imposition.

Merry Varney, from the human rights team at Leigh Day & Co solicitors which are representing AWA, said: “This is definitely one of the most extreme cases we have seen of a DNR order being not only imposed on a patient without consent or consultation, but to use Down’s Syndrome and learning difficulties as a reason to withhold lifesaving treatment is nothing short of blatant prejudice.

“If an individual was physically preventing a doctor from administering life-saving treatment to a disabled relative, it would undoubtedly be a matter for the police, yet we see doctors taking this decision without consent or consultation regularly.

“The absurdity of this is highlighted by the contrast with cases where people wish to end their own lives.

“Any doctor assisting patients with capacity such as Tony Nicklinson or our own client ‘Martin’, who wish to end their own life would face prosecution for a serious criminal offence.”

Mr X, a family member who is acting as the litigation friend for AWA, said: “We were all shocked to find out about what had been put into AWA’s notes without our knowledge.

“One member of the family at least was in the hospital practically every day and could have been consulted about the decision.

“We are bringing this action to highlight the issue and to make sure that something like this cannot happen to another loved son and brother.”

Ms Varney said she was also leading another case aimed at creating a nationwide policy for DNR orders rather than leaving them to individual NHS trusts.

Dr Neil Martin, medical director for East Kent Hospitals University Foundation Trust, said: “The Trust cannot comment on this individual case because it is subject to ongoing legal proceedings.

“East Kent Hospitals has put a great deal in place in recent years to meet the needs of vulnerable patients, including practical steps to improve communication with people with learning disabilities and their carers.

“It has a clear and robust policy in place on ‘do not attempt cardio-pulmonary resuscitation’ which complies fully with national guidance from the professional bodies.”


Readers' comments (20)

  • michael stone

    This was reported in today's Times (p 19 - there is also an interesting unrelated piece on page 28) with almost exactly the same wording as the above, but te Times included what appears to be the wording from the DNACPR Form:

    the reason was that AWA 'had Down's syndrome, unable to swallow (PEG fed), bed bound, learning difficulties'.

    This is my area of interest - and 'learning difficulties' has no place in any justification of DNACPR based on 'CPR would fail for a clinical reason', and doctors should not be making section 4 MCA 'best interests' DNACPR decisions alone, in this type of situation. So, Dr Martin either does not understand 'the national guidance' (fascinating term !) or that guidance is not a correct interpretation of the law and ethics (quite possibly both, having extensively discussed this and discovered that many people one would expect to understand this stuff, very clearly don't).

    I'm stopping, before falling prey to my tendency to rattle off treatise-sized elaborations of the problems in this area of 'the rules for dying/CPR' !

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  • DH- I agree! This is shocking.

    How the Trust can have guidance which does not require the involvement of the patient/family/carers in these incredibly sensitive decision beggars belief. Has Dr Martin never heard of the phrase "nothing about us without us"?

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  • Juggling Dog

    Anonymous | 14-Sep-2012 12:36 pm

    many hospitals, have got guidance that says patients don't need to be told about DNACPR decisions made on the basis of 'CPR couldn't work'.

    This one involves a mentally-incapable patient, and it then gets very tricky - but many clinicians don't like discussing CPR with either patients or relatives, and the law is quite involved and not awfully well-understood. The DH guidance, tells doctors to properly discuss these situations with relatives, but hospitals often don't follow that bit of advice.

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  • tinkerbell

    it is very sad that the family were not informed, even if only as a matter of courtesy.

    I don't know all the clinical reasons for this decision so can't comment, but thoroughly feel for the familys position in this matter.

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  • Not all is being said about this case methinks, but DNAR decisions are NOT the perogative of patients OR relatives, but those involved should have been informed at the time.

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  • Firstly the man has Downs Syndrome not a Down Syndrome sufferer.
    Has the mother of a son who has an extra 21 chromosone, the only 'suffering' we experience is from other 'professionals' and people with out dated and bias opinions about the value of our children and thus not treating them with the same respect and right to accessing the same rights as the 'perfect ' person in the same medical situation sat next to them.
    Eugenics is slowly accepted by the world and supported by the medical profession and government, this is when humanity starts going out of the window.
    I feel sad for mankinds future !

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  • redpaddys12 | 15-Sep-2012 3:52 am

    DNAR decisions ARE made by relatives who have been appointed as welfare attorneys, and if resuscitation might be successful the law is very clear about that point.

    If resuscitation would be clinically impossible, then clinicians are not required to attempt it: but if you know CPR would definitely fail, there isn't any genuine decision, is there.

    The law is more complicated that most clinicians accept, if CPR could be clinically successful and the patient is mentally incapable, and there isn't a welfare attorney - but it doesn't say that clinicians can impose decisions in that situation.

    Anonymous | 15-Sep-2012 10:21 am

    I tend to agree with you, but I don't think that eugenics is being accepted.

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  • tinkerbell

    Anonymous | 15-Sep-2012 10:21 am

    Absolutely. No if, buts or ands. Justice should be blind, unfortunately that is why we need Human Rights because there are some who see lesser abled as 'inferior'. It's happened once and it can happen again God forbid.

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  • Anon 10.21 & 10.52
    No, its not eugenics. People with Trisomy 21 are born with congenital heart defects. It is rare for people with this condition to live to very great ages, most pass away in their 40's and 50's due to this ( although this is improving).
    The chances of rescuscitating a person who doesn't have these conditions outside of a specialised monitored area are slim to say the least. Hence rescuscitation would be futile, hence it would not be performed.
    I have had the extreme pleasure over the years to work, rest and play with a number of people with Downs Syndrome, and I can echo the sentiment that they are wonderfull, full of brio and love and humour, and no nurse or medic would want them to go through unnecessary suffering, and it seems like this is the case here.
    In the wider picture, there does seem to be an erosion of services offered to people with disability in this country. Couple this with advances in technology we may well see people with inherited diseases disappear from the population in the coming decades. Great for those who would be born with cleft palates and sickle-cell anaemia, far more emotive and philosophical in the case of Downs.

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  • The results of surviving resuscitation if brain damage is sustained as a result is devastating. If in addition there are congenital heart defects this surely speaks for itself.

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  • tinkerbell

    redpaddys12 | 15-Sep-2012 1:20 pm

    thanks for your informed post. Most reassuring, well extremely reassuring.

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  • michael stone

    Anonymous | 15-Sep-2012 10:21 am

    I have been discussing this type of thing with ‘all and sundry’ for about 3 years, and I don’t think it is ‘euthanasia’ – in fact, with paramedics the problem is how to prevent them from attempting inappropriate resuscitation.

    The problems seem more connected to;

    1) most people do not really like discussing dying, and that also goes for clinicians;

    2) although lawyers understand the law around death (in so far as it is clearly defined), clinicians tend to be less good at properly interpreting the law: in particular, clinicians seem to have problems with the bits where the law does not lead to ‘unique right answers’;

    3) ‘the system’ likes decisions to be made in advance, to be documented, and to be much cleaner-cut than the decision-making, as defined by the law for CPR, actually is.

    Throw in some confusion between mental capacity and mental health, an apparent lack of ability to grasp the difference between a legal duty and a legal power, and the various problems left as non-defined by the Mental Capacity Act (notably, the problem of multiple equally-qualified decision makers who don’t agree with each other, the fact that the MCA’s best interests test simply cannot apply to an arrest directly from mental capacity {normal Considered Refusal applies}, and that the MCA is almost impossible to work with if the patient is long-term mentally incapable, and the complications section 42 introduces) and issues hinging on perspective and potential multi-profession involvement, and it takes an age to explain exactly why a lot of beliefs cannot be correct legally. Even then, it does not follow that unique correct courses of actions always exist – in some situations, different people can be equally justified in making different and conflicting choices.

    But it does NOT, for clinically possible CPR, ever simplify to ‘the clinicians make the decision’ if there is time to properly apply section 4 of the MCA !

    If CPR could not possibly work, CPR need not be offered. But the 2 major issues about not telling the patient/relatives about such a clinical DNACPR are:

    a) How do you get an independent second opinion about the likely success of CPR, if you are not told of the DNACPR ?

    b) If the patient is at home, and the patient is not told, must his live-with ‘relatives’ be told of this DNACPR decision ?

    If CPR might work, and there is a single suitably-empowered Welfare Attorney, then the WA can effectively forbid future CPR (this can only be challenged by an appeal to the court). If there is not a Welfare Attorney (and Court Deputies are irrelevant here – they cannot issue instruction re CPR) and there is not an applicable DNACPR instruction from the patient (verbal but face-to-face will do, despite the fact that many clinicians have incorrectly interpreted the requirement that a valid ADRT refusing life-sustaining treatment must be in writing, as meaning that a verbal refusal of future CPR isn’t legally binding), then the logical requirement of the law is that the clinicians and relatives (actually, anyone who could answer the question, by knowing the patient well enough to ‘try and think like him’) should get together and then this should happen:

    The clinicians describe the clinical prognoses with and without CPR;

    Then the ‘relatives’ attempt to answer this question: ‘If we could ask the patient if he would want us to attempt CPR, what would he say ?’

    If all of the relatives independently agree about the answer the patient would give (this is not a vote) then everyone works on the basis of that answer, be it ‘yes’ {attempt CPR} or be it ‘no’. You do not need to claim, that a specified person ‘made the decision’ if everyone agrees what the correct decision is ! If there is a disagreement, it gets complicated: if some ‘proxy minds’ say ‘yes’, and some ‘no’, then it appears that all clinicians must attempt CPR, the ‘yes’ relatives must support CPR, and the ‘no’ relatives must not do anything to promote CPR – if anyone is unhappy with that situation, they can try for a court ruling.

    My own problem area, is patients who are dying in their own homes, and it gets much more complex because it involves post-mortem verification of death behaviour, and that is not really legally-defined – also, the police have no genuine understanding of how end-of-life death at home works in terms of the interactions that really tale place between patients, live-with relatives, GP and district nurses, as opposed to the hugely optimistic ‘theoretical’ descriptions of these discussions and interactions, that appear within guidance. The police also seem to consider that just-bereaved relatives, don’t have human rights – I’m not at all happy, about that !

    The Daily Telegraph report of this case, included:

    ‘Hospital trusts are required to comply with guidelines from the Resuscitation Council UK’.

    As I sent to some of my e-mail discussion partners, yesterday:

    Really ? Surely hospitals are ‘required’ to comply with the law.

    redpaddys12 | 15-Sep-2012 1:20 pm

    If CPR couldn't work, then learning difficulties should not have been on the DNACPR Form. Clearly Down's could be a factor in deciding if CPR would fail - but if CPR might succeed, clinicians should keep out of 'quality of life' judgements, which is where the people who know the patient fit in.

    As an aside, it is possible to describe a scenario where CPR should only be attempted, if it would definitely 100% fail (I'll leave that one, as a puzzle - I'll explain it, if asked).

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  • michael stone

    really tale place

    really take place ! Grr

    Just to clarify the above, if everyone agrees that the patient would have asked for CPR, that still falls under the normal rules that it is a request for treatment (but subject to the provision that CPR cannot be withheld if the motivation is to cause death). That gets very complex, because clearly the fact that you have arrested, does not give you extra rights to any treatment the system was unable to provide at an earlier time (resourcing issues are not 'motivation is to cause death' - nobody is very open about that, at all, including many judges).

    But the 'no' should logically be treated just as if it were a refusal of consent from an informed mentally-capable patient, and that is definitely the patient's decision.

    This is one of the many splits (refusal/request, home/hospital, mentally capable until {or almost until} the CPA occurs/never mentally incapble {or not capable for a long time prior to the CPA}) that make this area complicated, if you don't properly understand the principles.

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  • tinkerbell

    DH Agent - as if ! | 15-Sep-2012 2:59 pm

    Mike just to clarify, are you saying that under MCA 1(4) you have the right to make an unwise decision about CPR or you do not have the right?

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  • michael stone

    tinkerbell | 15-Sep-2012 5:07 pm

    Tink, patients who are not known to be mentally incapable at the time, are allowed to refuse any offered treatment, including CPR. Provided the patient has been adequately informed of the clinical factors, the patient throws in his wider-life circumstances and his 'beliefs/views/mindset' and then accepts or refuses: the legislation does not say that a patient need explain his reasons for refusing, and the MCA, wider law and the GMC accept that the patient's decision cannot be questioned simply because 'it seems unsound or unwise' to anybody else.

    If you are not allowed to ask why the patient decided as he did (he can choose to tell you, but you cannot insist on being told), then obviously you cannot test 'how wise' a patient's decision was - patients do not need to make decisions in their own best interests, because the question is meaningless (they decide what 'my own best interests' means).

    People other than the patient, are required to follow the principle of Considered Refusal while patients are mentally capable, and to follow the MCA if the patient is mentally incapable: for most situations, that means that you must be able to claim that you have satisfied section 4 of the MCA, so that you can claim the legal protection offered by section 4(9).

    At a fundamental level, in England and Wales, it is no longer true that 'clinicians must act in their patient's best interests'. Because mentally capable patients effectively decide what is in their 'best interests', and 'best interests' during incapacity means 'in accordance with section 4 of the MCA'. All that is left, is a duty to competently perform any treatment which is accepted, or deemed a correct section 4 decision.

    If you go to:

    you can download something I sent to Ambulance Services a while ago: it isn't an overall view of this area, but it contains some interesting points/issues. If it ever gets 'approved' (it has been awaiting approval for ages') there is a much more interesting collation of survey replies, also on the Dignity in Care site.

    The law is clear, that a mentally capable patient can refuse any offered treatment even if a clinician considers the refusal is not in the patients best interests, and that the clinician must comply (so ADRTs are instructions, not statements of wishes).

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  • michael stone

    Tinkerbell, if I wasn’t so angry about the guidance, playing the game of ‘spot the obvious nonsense’ would be interesting.

    And there is a complication: science is about filling-in the bits you think you don’t understand, while medicine is understandably mainly applying the bits you think you do understand.

    But, you cannot ignore a sound piece of logical necessity.

    So, think about the MCA’s section 4 best interests test. We don’t really know, for certain, what it is (i.e. we don’t have ‘an equation’) but you can be certain of some things.

    1/ we know that whatever the section 4 test is, it cannot require any specialist clinical expertise to perform it. We know this because a person is allowed to appoint a non-clinical person as a Welfare Attorney, and if there is a suitably-empowered WA, the WA is the person whose section 4 decision cannot be challenged by other people (section 6(6)(a)).

    2/ we also know, that the court will not give this level of authority to its own appointees (section 20(5)) – so the court will allow a person to appoint a WA to ‘make life-determining decisions in my stead’, if there is a WA those decisions are almost impossible to challenge, but the court will not appoint Court Deputies to make such decisions.

    When you look at section 4(6):

    4(6) He must consider, so far as is reasonably ascertainable—
    (a) the person’s past and present wishes and feelings (and, in particular,
    any relevant written statement made by him when he had capacity),
    (b) the beliefs and values that would be likely to influence his decision if he
    had capacity, and
    (c) the other factors that he would be likely to consider if he were able to
    do so.

    and also at section 5(2):

    5(2) (2) D does not incur any liability in relation to the act that he would not have incurred if P—
    (a) had had capacity to consent in relation to the matter, and
    (b) had consented to D’s doing the act.

    then a reasonable interpretation is that the MCA wants you to try and work out ‘what the patient would have said, if somehow I could have discussed it with him’.

    If you assume that is indeed the starting point of best interests decision making, then logically you need to start by describing clinical factors (down to the clinical team) and then to ask people with life experience of the patient’s decision-making ‘what do you think he would say ?’.

    In that context, and assuming that you want to harvest as much relevant information/opinion as possible, logically the clinical factors would need to be described to everyone who was capable of doing the ‘proxy mind’ bit (Scotland uses the proxy mind term, and I like it) and then you can rationalise where section 4(7) comes from:

    4(7) He must take into account, if it is practicable and appropriate to consult them, the views of—
    (a) anyone named by the person as someone to be consulted on the matter
    in question or on matters of that kind,
    (b) anyone engaged in caring for the person or interested in his welfare,
    (c) any donee of a lasting power of attorney granted by the person, and
    (d) any deputy appointed for the person by the court,
    as to what would be in the person’s best interests and, in particular, as to the
    matters mentioned in subsection (6).

    Now, the interesting bit here, is that anyone who does know the individual patient well enough to conclude ‘I reasonably and honestly, think he would have said ‘….’’ has just PERFORMED THE SECTION 4 TEST: each answer, from any one of those individuals, MUST BE a section 4 best interests test decision.

    There isn’t, any logical way of claiming that ‘my decision is better than yours’ – and section 4(9) just says:

    4(9) In the case of an act done, or a decision made, by a person other than the court, there is sufficient compliance with this section if (having complied with the requirements of subsections (1) to (7)) he reasonably believes that what he does or decides is in the best interests of the person concerned.

    However, not having a single decision-maker and a unique agreed solution, seems to be too much for the system to cope with – it attempts to use the Code of Practice and further guidance to impose ‘the doctor makes the decisions’ (neglecting the small complication, that section 42 of the Act, does not include ‘normal relatives’ or ‘the patient himself’ within those categories of people who need have any regard to the Code).

    What the Code allows, is effectively for a GP to ‘somehow tell District Nurses what to do’ (for example, the Code does allow for a sort of professional hierarchy, where if the GP signs a DNACPR, nurses should almost certainly follow it), but GPs cannot instruct relatives, and normal relatives cannot instruct clinicians.

    But, going back to the section 4 test, a non-clinical relative is not trained to become a Welfare Attorney, it is by appointment. So, I could be reading up on the law while awaiting my appointment as a WA to be confirmed by the court, and then when the confirmation drops through my letterbox, I immediately become the ‘ranking decision maker for section 4 best interests decisions’. But my belief as to what section 4 means – what the test is – would not be affected by the arrival of the confirmation letter: hence, logically, if you believe that there is a unique section 4 test, you should be asking laymen, to read the MCA and to tell you what it is (because clinicians are already influenced by their guidance, but clinicians will only be a small minority of WAs).

    If you believe everyone can make up their own minds, about what the section 4 test is, then fine – but nobody can then impose his/her interpretation, onto a patient’s relatives: any relative can have his/her own interpretation of the test.

    As I asked the RCGP:

    What is the difference, between a patient saying to his GP ‘I am forbidding attempted CPR from now onwards’, and the patient saying to a live-with relative ‘If you think I’ve stopped breathing, don’t call anyone and just let me die in peace ?’.

    Any answers involving either:

    Distrusting relatives by default;

    or, ‘asking relatives to prove things which cannot be proven’ (for example ‘how can you prove that conversation took place ?’)

    will be met with my equivalent of the foul language you yourself reserve for government ministers and their allies !

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  • tinkerbell

    DH Agent - as if ! | 17-Sep-2012 2:16 pm

    We discussed this on the physical restraint course. I brought the issue up as being so confusing to understand or know what it all meant and that this confusion could lead to someones rights being abused by treating everyone with dementia under MCA as far as DOLS and treatment etc., It was agreed the MCA was really 'grey'and may give people less rights.

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  • michael stone

    tinkerbell | 17-Sep-2012 8:53 pm

    I have not bothered to read the MHA, because the MCA is adequate for my purposes. The MCA says that anyone who is not known to be mentally incapable, is de facto mentally capable.

    It also uses the test from a 1990s court case involving a schizophrenic who was refusing treatment, as the test for mental capacity: the test is the abilty to retain the necessary information for long enough to consider it and to form a decision, and (although technically this isn't mental capacity) the ability to express the decision.

    A patient can therefore have mental limitations, or mental illnesses, and still sometimes be mentally capable for the the purposes of the MCA, if the test within the MCA is passed (and as the patient does not need to explain his decision-making process, it is almost impossible to prove that anyone 'reasonably lucid' isn't mentally capable).

    There is a slight complication of 'irrational fear' precluding mental capacity, but for a refusal of CPR the patient would be 'out of it and not in pain' at the time you would be attempting CPR, so that does not apply.

    One problem, is that the NHS keeps confusing things: Wirral's AS paramedics were sent a long paper about MCA decision-making, authored by 2 nurses who work mainly with dementia patients, about a year ago when the AS was looking to improve its guidance re its involvement in home EoL situations. This is inappropriate for 999 paramedics, because there are no such complication for the many dying patients who are not demented.

    When I send my annoying e-mails to the people who publish annoyingly flawed bits of guidance at 'intermediate' level, I sometimes get 2 stages of reply:

    1) You raise very valid issues, I'll discuss these with a colleague and get back to you;

    2) (about a month later) This appears very complex - perhaps you should discuss it with .... instead of us.

    I got that from a couple of middle-ranking nurses (I think one was listed as a contributor to some guidance I'd read), who said 'the area SHA EoL lead on this is 'X', try asking her'.

    I e-mailed back 'Thanks, I'm already discussing this directly with 'X'. And 'X' has got the law wrong, as a matter of interest.

    The MCA is not 'grey' except for some things (long-term mental incapacity, mainly, and the issue of who can make decisions - along with what section 4 means) but the current clinically-authored guidance about it screws up even some of the clear parts, and the area of 'expected death' is even more confused ! It really isn't as hard to understand, as the current guidance makes it seem to be.

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  • tinkerbell

    DH Agent - as if ! | 19-Sep-2012 11:07 am

    jargon is so infuriating, the meaning gets lost in the words, maybe deliberately. I wish you luck with your struggle to get a straightforward answer, as if!

    Why use 10 words when one might do, or as they do why use one word when 10 will do?

    I'm sure your passion will propel you on this particular issue.

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  • michael stone


    Your earlier question has ‘set me off on one’, when I combine it with something Stuart Sorensen, a mental health nurse who writes about the MCA (largely correctly), wrote in his stuff. I’m being drawn to the suspicion, that there is something in the interpretation of the MHA, or in the deprivation of liberty guidance, that is conflicting with the MCA – I’ll be e-mailing this question to various people. The MCA starts, as an attempt to extend a patient’s right to autonomy into periods of mental incapacity, and it presumes capacity. I know that many clinicians don’t seem to understand that presumption (for example, the presumption of capacity, means that the common idea that an ADRT should include some sort of proof that its author was mentally capable is flawed: unless there is proof available that the author was mentally incapable, a reader must assume capacity existed – this type of ‘reversal of emphasis’ is very common, and very annoying) but I’m now wondering if some non-MCA guidance is causing a problem as well.

    This is probably impossible to achieve: but I would prefer for people to read and memorise less, and to read and think more. And to test if their beliefs can make overall, coherent, sense. The issue of what you do after you have concluded that the guidance you are expected to follow is wrong, is a different question: I’m fully aware, that the high-level guidance has got to be correct, as part of the solution to this problem.

    I wish that clinicians would use ‘thought experiments’ to test their own conclusions and beliefs – it isn’t hard to do. For MCA-related stuff, here are a few thought experiments (or thought provoking questions {TPQ}, if you prefer the term: actually, the answer is already in the question/experiment). The one I posted earlier, about the difference between a patient saying to his GP ‘I forbid CPR’ or to a relative ‘Don’t call 999 if I stop breathing’ is a classic TPQ.

    There isn’t a thought experiment, that sorts out the situation for long-term mental incapacity: there is a thought experiment, but it leads to the conclusion that the MCA itself is almost useless for long-term mental incapacity, because it has the contradictory principle/conclusion of ‘patients must be treated as individuals’ and ‘we cannot truly work out what ‘this individual’ would have said to us, had he somehow been able to’. But proving that something cannot work, is telling you something, nonetheless ! Although being told ‘there is a law we are supposed to obey, here, but it isn’t possible to work out what the law requires us to do’ is more than a little disturbing.

    These are just cut and pasted from my index to a set of pdfs I’ve written up (the MHSn references).

    Thought Experiment: a simple theoretical ‘test’, to decide if a claim or suggestion makes sense. Unlike a real-life experiment, the answer (or, the point being illustrated) is already known when the test is designed, so a thought experiment is really an explanation.

    For example, suppose it is suggested that a DNACPR Instruction automatically indicates that a death would then be ‘expected’. The thought experiment is simply that as a clinical technique, CPR had not been developed – so there could not be DNACPR Instructions. That does not alter the point of ‘expected death’, which is to simplify post-mortem behaviour when a death has been anticipated as very imminent by a doctor: hence, there cannot be a direct link between a DNACPR Instruction and expected death

    Patient talking during a CPA: MHS2 page 50 (this was a personal experience, and I think my father talked to me for about 5 seconds, after his heart had stopped beating: that leads to an interesting thought experiment).

    Our biology, is such that when we arrest, we become unconscious within seconds, but then might perhaps be resuscitated for 10 - 15 minutes approx. It could be imagined, that these periods were reversed; then we would still be able to talk for the first 10 - 15 minutes of an arrest, and perhaps would lose consciousness only ‘as we finally died’. If our bodies worked like that, and the onset of unconsciousness was effectively coincident with the time after which CPR could no longer be successful, then we could directly refuse CPR during a CPA, exactly as we can refuse other treatments while we are mentally capable.


    DNACPR Order: discussed passim, but see especially: MHS5 page 20. Also the whole of MHS6 is about contemporary DNACPR orders.

    DNACPR Order, and DNACPR alone, are both terms which cover a wide variety of different things and the terminology is much too loose: it can indicate things which range from a decision inside a person’s head, through a DNACPR document which is also an ADRT, to a document which merely represents a clinical opinion about the likely failure of a future CPR attempt – legally, these things are very different, and lumping them together under a single ‘label’ is unhelpful. I also dislike the term DNACPR Order, and prefer ‘Form’.

    Finlay, Baroness Ilora: article in The Times, MHS2 page 58. She is arguing a case for something else, but she writes ‘A nurse cannot listen if she is not at the bedside’: well, if only a relative is with a patient, only the relative is there to be told something by the patient. Quite why the logic of this is ignored by guidance, is extremely annoying !

    My index also included extracts from some of the more interesting e-mails I’ve received, just to remind me where they are in my write ups:

    Marisa, Bereavement and Mortuary Services Manager: ‘I recently performed a workshop with a wide range of professionals from nurses educators,
    nurses etc at Thorpe Hall and was aghast at their lack of knowledge around this area. What was more surprising is the lack of a forum for them to be educated.’ MHS2 page 30

    Judith G, MSc RGN CSP Manager St John Ambulance: ‘I think my final comment of the population not being open and able to talk about EoLC/CRP is the underlying issue.
    We as a group have lost the plot – death will occur for us all. However is the process of death and what we would like to occur during and following death that needs to be discussed. The End of Life strategy encourages HCP’s to complete an end of life care plan but in fact Nurses are often guilty and feel unable to complete them and so not do them.’ MHS3 page 40

    Jane A, Patient Advice & Liaison Manager, Bereavement Manager: ‘As a nurse I got so upset and frustrated at the amount of patients being inappropriately resuscitated; prolonging a painful death and what I thought lacked dignity in death’. MHS3 page 38

    Alan L, Social worker working primarily with the elderly/terminally ill: ‘In my experience some patients do welcome the choice to decide following discussion with a doctor for a DNAR , they view their general quality of life as so poor its is a realtively easy choice for them . However I have generally found that it is very difficult for Doctors to have this discussion and they tend to obscure the information with medical jargon, talk around the subject ,and
    often in such a short timescale that it often leaves the patient wondering exactly what the purpose of the discussion actually was , It is only after, perhaps with the support of another professional , trusted nurse etc that they actually come to terms with the questions / discussion / prognosis etc. Just because it is difficult for doctors to summarize a persons prognosis / condition and effect of the conditions on their daily life and ask a persons opinion on DNAR doesn't mean that it should be changed.’ MHS3 page 34

    From a person with Early Onset Lewy Body Dementia: ‘As far as I am concerned I have made plans that, if I become too ill I do not wish to be kept alive, just to suite a clinician and end my days in a care home. …. I think this subject is difficult to sort out, but like many of my friends who have this illness, we are sorting this out so that others are not left with difficult decisions.’ MHS2 page 6

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