The Perspective Series

I'll start with this. Recently I have been discussing some issues with the Mental Capacity Act with a hospital consultant doctor who works with elderly patients, and also [in different e-mails] with someone whose job involves trying to get doctors, nurses and other care staff to properly implement the MCA.

I had argued in an e-mail to the doctor, that because the MCA's best-interests decision-making seems to be based on 'understanding the patient as an individual', that if 999 paramedics are called to the home of a collapsed patient, the person who called 999 often seems 'better placed to make best-interests decisions than the 999 paramedic could [ever] be'. The logic is simple, for 'terminal patients': the people living with the patient, 'know the patient as an individual', and can have been talking to the patient about 'what would you like to happen', etc - and, crucially, they might have been told 'clear decisions about the future' by the patient (for example, if the patient had created a written Advance Decision (ADRT) refusing CPR, the patient would have explained this to his family carers - and the patient would also tell his family carers [probably FIRST] if he retracted the ADRT).

I asserted 'but 999 paramedics tend to ignore what family carers tell them, and to 'primarily look to the notes/records'.

My consultant hospital doctor wrote in an e-mail:

'... in brief, for now, it is absolutely right that in an emergency situation where there has been no great ability to plan and where its clear a close family member lives with the person/is the caregiver, then they know the person, their views/wishes/interests better than the clinical team who arrive and therefore should listen to and act on them and that as you have argued the law on best interests/capacity would support them in doing so. Of course paramedics or community nurses are not really "junior" they are autonomous professionals in their own right.

What makes it hard for them is not so much the technicalities of the regulations around the mental capacity act or best interests its that unless the person is clearly dying they have been called to an emergency which is serious and potentially life threatening but its hard to know for sure if the person will survive or not ...'

There are some problems for 999 paramedics with the difference between life-sustaining and other treatments (although the 'legal differences' between the situations are both over-played and also misunderstood in my opinion) - that can be a factor with things like serious chest infections - but I think '999 are not being told to default to trusting and believing the family carers' is the bigger issue/problem.

The person whose job involves implementation of the MCA seems much closer to me, on that - that person included in an e-mail:

' I've often encountered the argument that the attending clinician may know nothing about the lawfulness or genuineness of any document they're shown, which can lead to risk-averse, rights-averse practice'

All of us can see 'what the 999 paramedics 'see'' - the doctor's e-mail also included:

'They (999 paramedics) would not currently feel that empowered or supported - (maybe more so if they were specialist emergency care practitioners, but even then) in leaving the person at home to die in peace unless it was very clear that this was a dying person who had been expected to die for a while and for whom it was very clear that conveyance to hospital was not wanted or needed.'

and the MCA implementation person wrote:

'I start out by thinking, however, that it might be a good idea to record on a DNACPR recording form that a person has made a valid ADRT refusing CPR: this could be very helpful for, say, paramedics and in a confused situation, in that it gives, possibly, junior staff the confidence to obey the ADRT and recognise its legal force. '

CLOSING COMMENT: from MY perspective, this is all (see footnote) about '999 paramedics are distrustful of family carers and see that as ACCEPTABLE AS AN 'ATTITUDE' - I see being distrustful of family carers [in the absence of some actual evidence] as being OFFENSIVE AND THWARTING OF PATIENT SELF-DETERMINATION' and UNACCEPTABLE AS AN ATTITUDE.

Those are positions which are too far apart - as I wrote earlier:

We NEED TO SOMEHOW GET TO: 'You are right about that, and I am right about this, so can we agree that a sensible, balanced and fair position would be if we all adopted ...'.

FOOTNOTE: it isn't quite 'all' - there are some legal understanding, especially around verbal and written refusals of life-sustaining treatment, which also need sorting out, and would still need to be sorted out even if paramedics were told to 'trust and believe family carers by default'.

I have been privileged to discuss various end-of-life issues with many senior clinicians, and other professionals involved in EoL, and it is 'a privilege'. It is a privilege because as one of them pointed out:

'... I guess the difficulty you might encounter is that many professionals receive such huge volumes of email - most of which are task-orientated - that there is seldom time to sit back and engage in thoughtful discussion by email. This is particularly true of clinicians - we spend most of our time 'on the road' as it were - doing clinical work, participating in meetings, etc. - which means that our desk time is limited, and has to be devoted to phone calls, writing papers/reports, commenting on papers we're sent and dealing with emails'

Often these very busy senior clinicians [I'm not suggesting that less senior clinicians are not similarly busy - but they do not usually engage in e-mail discussions with me] send me e-mails in what should be their 'leisure time' (before or after work), which is very generous indeed: although I think 'sorting out EoL/MCA issues' should be PART OF their 'work', and hence they should be able to do it (provision should be made for them to do it) during their working time.

I would like to be clear about 2 things. It should NOT be 'a privilege' to directly discuss end-of-life issues with the senior clinicians who write the EoL 'guidance' - without the patients and families 'getting their position across directly' then even the most well-meaning professionals usually over-weight 'the professional perspective'. And secondly, my 'privileged access' to these senior clinicians, is essentially down to a mixture of sheer pig-headed persistence and 'LUCK' (with a few other things thrown in - 'low cunning' is a useful one, it turns out) - it is NOT in any way down to my views being more important than the views of those patients and relatives who are unable to get this access [my analyses might be more correct (or indeed flawed) than other analyses, but 'views/experience' are valid wherever they come from], and it isn't really that I am more dedicated than other people. The 'LUCK' is mainly that my mind happens to be very good at finding 'internal contradictions' in lengthy documents - that gives you a 'way in' to discussions, which is 'persuasive as a starting point'.

There is a survey of hospital DNACPR forms which I carried out during 2014, and it can be downloaded from some Facebook websites. I will post the details in my next post in this series. In the introduction to my survey, I explained something I keep seeing, during my interactions with doctors, and also when I read things they publish:

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It seems to me, that there is a significant difference between the way I look at the Mental Capacity Act, and the [apparent] way that many clinicians look at it. In essence, to me the Act is about the definition of, and duties and powers of, decision-makers, and about the principles these decision-makers must
follow: it is clear that the Act is not describing clinical things, such as the best way to apply a treatment, or how best to arrive at a prognosis - the Act is about a wider, less well-defined and much more complex, question of should
an intervention take place at all. I also see what I consider to be a lack of terminological clarity, around the phrase 'best interests': I reserve 'best interests' for decisions which involve the decision-maker being able to claim to have legitimately complied with section 4(9) of the MCA - effectively, this places the non-offer of a medical intervention because it could not be clinically successful, and any decision made by a person who does not understand at least a substantial portion of the things described in section 4
of the MCA, as 'not best interests decisions' (although, that does not automatically equate to not legitimate decisions).

By contrast, many clinical authors devote much more time to descriptions of the clinical situations in which decisions are made, with much less discussion of the origin of the 'legal authority or legal justification' of the person making a
decision.

Very bluntly, and somewhat over-simplified, I analyse the 'rules' by defining the decision-making process and this leads to less involvement of precise clinical situations in my analyses: most clinical authors are much more precise in their categorisations of clinical situations, but then they tend to make unproven assertions about who can legitimately be a decision-maker.

In its most concise form, this difference comes down to sentences which I often see, such as 'ultimately DNACPR is a clinical decision': unless 'a clinical decision' need not be a decision which requires a clinician to make it, that sentence is clearly wrong, because of sections 6(6) and 6(7) of the MCA, taken in logical combination with the absence of any requirement that welfare attorneys and court deputies need to be clinically qualified.

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I was told by one doctor that I seemed to be treating the MCA as 'some sort of intellectual game' (my phrase), which could not be further from the truth. The same doctor accused me of 'understanding the MCA but ignoring it' and my response was 'I am not ignoring the MCA, and in my opinion you do not understand the MCA properly'. The doctor in question has been writing about the MCA for longer than I have - we do not write the same things, in some very important respects.

I have a scenario called 'Alan and Liz' which you will find [as Question 1] in my piece at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=767&forumID=45

The situation, is an elderly but still healthy man, whose mother had suffered a stroke some years before she died, and between the stroke and her death had 'been very damaged and very 'distressed by her situation''. The clinical issues as presented in 'Alan and Liz' are:

'So he asks his GP "How do I refuse any attempt at CPR, if I am in CPA - if my heart has stopped, I prefer to be left alone to die, rather than to face the highly uncertain outcomes of 'successful' CPR.

But I want Liz to be able to call 999 if I collapse, because if I'm not in CPA I would probably want treatment - for example, if I've collapsed with a stroke, and it wouldn't kill me, I would want as much active treatment as possible, to avoid living on with avoidable clinical
damage.'

That seems clear to me: 'if my heart has stopped' means, when made longer 'if my heart is effectively not circulating blood [and I am not breathing], so I will of course be unconscious and if left alone I will die within a few tens of minutes'. Somehow many doctors who read that, think about 'heart attacks'. One doctor who in the past has implied that he 'prefers the broad sweep to the fine detail', and that by contrast 'you (i.e. Mike Stone - me) are looking too closely at tiny details' recently explained in an e-mail to me:

'There are a few scenarios in medicine (such as sepsis, low blood pressure, acute confusion (aka "delirium"), breathlessness and certainly what we might call "peri-arrest" where someone looks like they are about to suffer cardiorespiratory arrest, and indeed cardiac arrest itself, where discovering the underlying cause might take a while and isn't always readily apparent.

In the case of peri-arrest or an actual arrest, commonly it is a heart attack (Myocardial infarction), a pulmonary embolism (a clot on the long), severe dehydration, hypothermia, very low blood sugar, overwhelming infection, several heart valve disease, a stroke or bleed on the brain, or perhaps cardiac failure that is nearing end stage, or perhaps side effects from medications such as strong painkillers or blood pressure pills. Even these causes in turn may have underlying causes e.g. the blood clot may be related to malignancy that may not yet be diagnosed.'

This is doubtless all true - he is the medic, not me - but for Alan, the CAUSE OF his heart having stopped is IRRELEVANT: his position is that IF his heart has STOPPED the outcome of CPR is so uncertain that HE WANTS TO BE LEFT UNTREATED TO DIE. He doesn't care about why he arrested: he doesn't care about whether his death could be certified, although he does care about his wife, Liz, and he also says to his GP in my scenario:

'Also, nobody could certify that death at the time, but it is my decision and not Liz's - how do I make sure that Liz, who knows I don't want CPR but would presumably be shocked and should not therefore be 'unnecessarily harassed' just after my death, isn't messed about by the police: I think messing Liz about, would inevitably strengthen her long-term memories of the actual death, and that is a very bad thing.'

As I wrote in my Hospital DNACPR Survey, shown above - '... many clinical authors devote much more time to descriptions of the clinical situations in which decisions are made, with much less discussion of the origin of the 'legal authority or legal justification' of the person making a decision.'

This is clearly SUPPOSED TO BE the patient's decision - that is the entire point of the Advance Decisions laid out in sections 24-26 of the MCA. And - this somehow gets lost in much writing - treatments are not logically refused or accepted on the basis of the clinical situation at the time: it is the FUTURE which you consider, when deciding (for CPA and CPR, the cause of the CPA is only relevant in so far as it influences the post-CPR clinical situation - you wouldn't normally {note: you could if you wanted to - but it is not obvious why you would decide to} be refusing CPR because of what caused the CPA, but because you preferred death to the possible life you would have after 'successful' CPR).

But you simply CANNOT ACHIEVE THIS IF YOU ARE AT HOME - and if you managed to achieve it (if you managed to forbid CPR for a 'sudden' arrest, when the death could not be certified by your GP) then you family (here his wife Liz) will almost certainly be treated 'like suspects' by the police [who will almost certainly be involved].

This looks wrong if you are Alan or Liz, but it apparently looks okay if you are the 999 Services. See also:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=785&forumID=45

If you read protocols (and some 'clinical mindsets', which apply to Home Death, they get VERY CLOSE TO 'you can only refuse CPR if we know you are about to die anyway' - which is very close indeed to the utterly pointless 'you can only refuse CPR if it wouldn't work anyway'.

FOOTNOTE

In theory, you can refuse an offered treatment 'for any reason at all'.

You could refuse any administration of a particular medication with no mention of the illness being treated - you might do that, if you considered the drug had been developed by testing it on prisoners of war, and you were 'reviled' by that.

You could - you would probably end up defending your mental capacity if you did, but you certainly can in law - make really 'weird' refusals: for example 'I refuse attempted CPR on Saturdays and Sundays [but not on weekdays]', or 'I refuse CPR if I am not inside a hospital when I arrest'.

More 'logically' you could decide 'I refuse CPR if my new Will has been witnessed (my 'new Will' is any Will of mine dated after 20 October 2003) - you might perfectly reasonably want CPR to be attempted because you were desperate to create a new Will, but you might be suffering so much that the instant the new Will had been witnessed, you would refuse CPR.

Or, you might be misled by clinically-designed Advance Decision templates, which tend to imply that you refuse a treatment because of the clinical situation which exists when the ADRT would be considered: which is, of course, both 'mad if you think about it' and also not at all what sections 24 - 26 of the MCA actually say.

A death is effectively CERTIFIED 'IN ADVANCE' (in other words, a death 'is expected') because of the clinical situation the death occurs in - quite different from why you would refuse an offered treatment.

The survey of hospitals about their DNACPR forms can be downloaded from either the Dignity in Action or my own EoL Facebook pages, respectively at:

https://www.facebook.com/groups/289089744481097/

https://www.facebook.com/groups/1722859091289711/

The file is titled 'The Hospital DNACPR Survey Report mhs Oct 2014' and it is a PDF.

The reason I did not put these details inside my earlier post, is that DIC immediately posts comments which only contain a few weblinks, but it does not immediately post comments with more than a few links in them.

Doctors often have an 'issue' with 'Informed Consent' (and to be 100% clear: the MCA describes informed consent in sections 3 and, effectively, in 25(4)(c) - and the 'Montgomery' court ruling has hammered home the point) which I do not have.

The 'issue' some doctors raise, is that the patient 'cannot know everything' and the claim is that this incompleteness of knowledge, undermines informed consent. The 'you can't know everything' bit is of course spot-on - but the 'so you can't have informed consent' conclusion is rubbish. The way informed consent works legally, is that the doctors must supply the patient with all of the clinical factors which the doctors are aware of and which might influence the patient's decision-making, and the patient then makes his or her decision. There is no [legal] concept of the process being invalidated merely because there is incompleteness or uncertainty in the information available for consideration (uncertainty is one of the things the patient needs to consider): what informed consent does, is to make it clear that the patient is the person who considers that information.

I once read a really long paper, proposing some [logically somewhere between mysterious, inadequately explained and plain bonkers] alternative to Informed Consent. Having used the argument I have just mentioned 'that informed consent is unsatisfactory because the patient cannot ever be fully informed' the paper then said something even more dubious. The paper suggested that 'informed consent could only work properly if the patient was a world-expert on the disease he was suffering from'.

Now, I'm sorry - NO !

Even an expert on the disease, STILL ISN'T 'fully informed' if the expert then develops the disease. Because OBSERVING an illness, is not EXPERIENCING the illness - and rationally, what you would be thinking about during 'informed consent' (although 'rationally' isn't really a requirement of informed consent, as it happens - see footnote) is HOW THE [outcomes after accepting or refusing the] OPTIONS WOULD 'FEEL' in the future: it isn't the 'objective clinical situation' that affects a patient, it is 'how the clinical situation affects 'how the patient feels and experiences the world'' that matters.

And you ALMOST NEVER KNOW FOR CERTAIN - even our 'world-expert in the disease' would not be certain how he/she would feel, if he/she actually developed the disease.

FOOTNOTE

In principle, you can decide to refuse an offered treatment for any reason which YOU feel is valid - and, I don't consider that 'Informed Consent' OBLIGES YOU to explain your reasons, so in reality you can refuse 'for no reason at all' (a phrase the GMC has, in fact, used in its guidance).

You might refuse the use of a particular drug irrespective of why the clinician is offering it - put differently, irrespective of your illness - because you believe the drug was developed by means of unethical and repulsive experimentation on prisoners of war.

These would probably force you to defend your mental capacity, but there is no legal reason why you could not 'refuse CPR if I arrest on a Saturday or a Sunday' (in other words, only accept CPR on weekdays), or 'refuse CPR if I arrest while not inside a hospital'.

More understandably, you might create a written Advance Decision saying 'I refuse CPR if a Will of mine which is signed and witnessed, and dated after 20 June 2004, is in existence'. You might do that, if the Will you mentioned is your 'old' Will, and you are desperate to finalise a new Will - so you would want CPR if you arrested before the new Will had been written up, signed and witnessed: you might also be in such great pain or distress, that as soon as the new Will had been successfully created, you would definitely not want to be resuscitated (my wording is what you should - according to the legal rules for written ADRTs - actually write in your ADRT: in reality, you would need to explain [in my view using a 'footnote' to the ADRT] the 'situation', because clinicians are remarkably bad at deciphering 'legal phrasing'). It might be easier for clinicians to grasp - doubtless you would still need a 'footnote' - if you wrote on your ADRT 'I refuse CPR if a Will of mine which is signed and witnessed, and dated after the date on this advance decision, is in existence'.

PS I do not think that it is legally necessary - as opposed to being very useful - for a written Advance Decision to be dated: it can cause problems if it isn't dated, but I think it is the signature of the witness which brings the ADRT into existence, even if the ADRT is not dated. I do however strongly advise anyone creating a written ADRT to date the signatures - however, I consider that an undated ADRT would still be valid, legally.

I am certain I have posted this one somewhere, and I intended to 'point at it' - but I can't find it, so I'll type it out again.

Despite a 'strong implication' within 'clinical circles' that decisions about cardiopulmonary resuscitation (CPR) made by doctors have got some sort of 'legal standing', and a down-playing of decisions about CPR made by patients, it is the decision made by the patient which both carries 'true legal authority', and is also 'simpler'.

Consider this situation. I am living with my terminally-diagnosed, and very ill, father. His GP explains to him that 'attempted CPR would no longer be successful - we will not be attempting CPR if you arrest, and I will be putting a DNACPR in your records'.

My dad now says to the GP 'Even if you think CPR would not work, I want you to try'. The GP sticks with 'we are not going to try CPR - it wouldn't work'.

My dad looks at me, and says 'If I arrest, I want you to call 999 and to ask them to attempt CPR'.

What am I going to do ? Even if I agree with the GP, that CPR would not work, do you expect me to argue with my dying father ? Do you expect me to lie to my dying father, and to 'carry the lie with me' after his death ?

It seems to me, that I would say to my dad 'If you want me to phone 999 and ask for CPR, then I'll do that'.

If the GP takes me aside and says 'but you know CPR would not work' then I would say 'I don't think CPR would work - but you will need to prove that, because I'm NOT going to lie to my dying father !'.

I can throw in, that if I (the son) had been trained in first aid, and had been told how to attempt CPR, there is absolutely nothing in our law, which would prevent me from attempting CPR if my dad arrested. By contrast, if my dad had made me his welfare attorney, and given me powers over life-sustaining treatments including CPR, and he arrested and I called 999 and said to them 'if my dad is in arrest, my best-interests decision is DNACPR' then they would be 'on very dubious legal ground indeed' if they attempted CPR.

It isn't clear to me, that most 999 paramedics understand this - but they should get up-to-speed with the MCA, for their own protection amongst other things.

I think it was autumn 2012, when I was discussing some MCA/EoL issues with a doctor who had written a lot of guidance about the MCA. It became clear, that one of our differences of opinion, was over section 4(6) of the MCA. It will help, if I show section 4(6) as it appears in the Act (the starting 'he' means 'a person who is making a best-interests decision'):

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.

This doctor, insisted that section 4(6) is 'independent of the decision-maker', in the sense that he refuted my claim that family and friends, who 'know the patient as an individual', can legitimately use this 'personal knowledge' if they are considering 4(6)(b) and 4(6)(c). Effectively I claimed that the spouse of a patient, could legitimately bring into play 'previous shared life-experience with the patient' in what I can only describe as the 'listen, I KNOW Fred - and he wouldn't do that, at all' factor. The doctor insisted that I was wrong.

At least one judge - Mr Justice Hayden - agrees with me. He released something in May 2014 which you can find at:

http://www.bailii.org/ew/cases/EWCOP/2014/4.html

Mr Justice Hayden wrote (my added UPPER CASE):

53. If ever a court heard a holistic account of a man's character, life, talents and priorities it is this court in this case. Each of the witnesses has contributed to the overall picture and I include in that the treating clinicians, whose view of TH seems to me to accord very much with that communicated by his friends. I am left in no doubt at all that TH would wish to determine what remains of his life in his own way not least because that is the strategy he has always both expressed and adopted. I have no doubt that he would wish to leave the hospital and go to the home of his ex-wife and his mate's Spud and end his days quietly there and with dignity as he sees it. Privacy, personal autonomy and dignity have not only been features of TH's life, they have been the creed by which he has lived it. He may not have prepared a document that complies with the criteria of section 24, giving advance directions to refuse treatment but he has in so many OBLIQUE AND TANGENTIAL WAYS OVER SO MANY YEARS communicated his views so uncompromisingly and indeed bluntly THAT NONE OF HIS FRIENDS ARE LEFT IN ANY DOUBT WHAT HE WOULD WANT IN HIS PRESENT SITUATION. I have given this judgment at this stage so that I can record my findings in relation to TH's views. Mr Spencer on behalf of the Trust does not argue against this analysis, he agrees that nobody having listened to the evidence in this case could be in any real doubt what TH would want.

Doctors also at least 'traditionally' seem convinced that normal family and friends cannot 'make best-interests decisions about the provision or withholding of potentially clinically-successful treatment' - they claim that only the clinicians can actually make best-interests decisions. I disagree about that, as well. You can legitimately 'make' any best-interests decision, if when you do it you can defensibly claim compliance with section 4(9) of the MCA (which amounts to, the legitimacy of the decision-making, depends on the decision-maker possessing an adequate understanding of the factors a decision-maker should be considering) - whether anybody can 'impose their decision on others' is a different question.

There is a doctor called Chris Danbury, who is upset by the consequences of disagreements between patients, or families, and clinical teams. He wants 'compulsory mediation' before disputes can go to a court for a ruling - I disagree with him about that.

But, interestingly - see my comment on his paper at

http://www.bmj.com/content/352/bmj.i222/rr-0

in his paper he wrote:

that the COP 'increasingly prefers the relatives' view of best interests to those of the medical profession'.

As I've pointed out above, and as I also pointed out in my comment: 'I have always claimed that the relatives are indeed 'expressing best interests decisions' [which, however, cannot be imposed on others] while traditionally clinical authors have claimed that 'the relatives contribute information which the best-interests decision-maker then considers'.

IF you ASSUME that the doctor will be considering section 4(6), you are EXCLUDING the 'expert understanding of the patient as an individual' which is possessed by the patient's close family and friends - Mr Justice Hayden does NOT exclude that expertise. Mr Justice Hayden gathers evidence about clinical situations from clinicians, and he then gets evidence about 'what the patient would decide in that clinical AND WIDER LIFE situation' from the family and friends who know the patient as a person.

There is something else, which I either heard Chris Danbury say, or it was reported that he had said - I cannot recall exactly which, but it doesn't really matter: this is 'something I can imagine many doctors might well say'.

It was that 'there should be compulsory mediation if a patient is refusing clinically-necessary treatment'. I might return to this 'compulsory mediation' in a latter piece - it is an interesting and lengthy analysis, if you start from the MCA.

The 'significant issue in there' is that there is no such thing during the 'consent' process, as clinically-necessary treatment. There are only treatments which might be clinically-effective [to varying degrees] and other treatments which it is believed could have no clinical effectiveness. There is no concept of a treatment being NECESSARY - if the patient refuses the offer of a treatment which would have been clinically effective, the treatment has been refused, and if a treatment has been refused it cannot be administered, and therefore cannot be 'necessary'.

I will finish this piece, by reproducing what I wrote at the start of the BMJ piece I have just referenced:

http://www.bmj.com/content/352/bmj.i222/rr-0

I first read the Mental Capacity Act in 2009. Between 2010 and the present, I have found it dismaying that my understanding of the Act, was not reflected in the writings of clinicians and other professionals. Since 2014 a series of court rulings have encouraged me, but
possibly dismayed clinicians, because it seems to me that judges are now agreeing with my interpretation of the MCA. If the MCA were a painting, it would be inconsequential if it looked different to different viewers: but, that is not the case for a law as fundamental as the MCA.

It does seem to me, that as you would expect, doctors are influenced by what happens while they do their jobs - and as similar things will tend to happen to doctors whose jobs are similar, doctors tend towards sharing similar views. At least, I think this is true in terms of 'the problems they face'. I'm equally sure that service users - patients and relatives - are influenced by what happens to them individually, but I think there will be much more variation 'across service users', and much less discussion between service users (in other words, and expressed very simply, it will be easier [simply in terms of 'having easy access to' other nurses] for a nurse who had a bad experience on a ward, to discuss that with other nurses, than it is for a bereaved relative who had a bad experience to discuss that with other bereaved relatives).

Doctors tend to write things such as this, which was in an e-mail to me from a senior hospital doctor, whose work includes elderly patients (it is more common for elderly patients to have lost their decision-making autonomy - their mental capacity - and in that situation, 'discussions with the family' come to the fore):

'You feel (from your own experience, and from plenty of others you have spoken to or read about) that doctors/nurses/paramedics routinely - most commonly act without involving family members, or ride roughshod over their views. Whereas I feel (from my own extensive experience not only of clinical practice but from how my colleagues practice) that generally practitioners do involve and consult and listen and make reasonable efforts to do so. Neither of us have definitive empirical research evidence (well I don't think we do) to say just how often people are involved. We therefore bring our own perspectives and experience and biases. I also feel that in general it is professionals like me who want to save people from overly burdensome intervention/treatment and often relatives pushing more desperately for more treatment and refusing to accept enough is enough.'

I think the doctor was using 'in general' wrongly in that final sentence - I have no doubt at all that most doctors do not want to do what I feel they would think of as 'inflicting pointless treatments on patients', but that is writing from his IN HOSPITAL PERSPECTIVE: I do not 'seek them out', but I do come across them, and I feel sure there are plenty of stories from angry bereaved relatives to the effect that 'the paramedics tried CPR and my dad didn't want that' or 'they scooped up my mum and rushed her to hospital, when she had told the GP she wanted to die at home !'. But - and I cannot be certain of this - I would not be surprised if the situation which hospital doctors find the most challenging, most often, is 'relatives pushing [increasingly] desperately for more treatment and refusing to accept enough is enough'. As it happens, that situation - the relatives pushing for treatment - is quite complex to analyse in legal terms.

I was accepting of my mum only being made 'comfortable' as she died, but ONLY BECAUSE I HAD ACTUALLY ASKED HER. For a brief period - about a day - I suspected that she was in significant pain, and I visited the GP to ask about pain relief: this never actually happened, because my mum very quickly became 'peacefully terminally comatose' and apparently not in pain (I certainly hope, not in pain, during those 4 comatose days). My mum wanted to die - I knew, because she refused to take some prescriptions, so I had to ask her [because I needed to be sure], see for the details inside my piece at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=759&forumID=45

Although I am aware that some relatives want treatment for their loved ones well beyond the point where an 'unbiased observer' would think it made no sense to continue with 'curative' treatment. I must add, that 'unbiased observer' and 'it made no sense' are very subjective phrases: read what people write in debate every time assisted suicide (as I, and most other people in favour of assisted suicide, call it) or assisted dying pops up as proposed legislation.

I think it would help, if doctors made clear the limits of treatment, and the failures of treatment, rather sooner and more honestly than seems to be the case at present [but I cannot claim an answer as to how - many people are reluctant to even make a Will, so they are not going to engage in conversations about end-of-life: and to make this even more difficult, certain bits of 'the media' seem to equate asking elderly people 'if you arrested, would you want to be resuscitated' with suggesting that people should be 'killed off''], as I mentioned in my piece titled 'Clinicians must be more honest about End of Life in all its forms':

http://www.bmj.com/content/351/bmj.h4846/rr

As for ''You feel (from your own experience, and from plenty of others you have spoken to or read about) that doctors/nurses/paramedics routinely - most commonly act without involving family members, or ride roughshod over their views', well, no, I don't. I think that senior doctors (consultants and GPs) are much more likely to 'involve family members' than paramedics in particular, and that 'riding roughshod over the family' is MUCH MORE LIKELY 'IN AN 'EMERGENCY''. I also think that almost all clinicians believe that the law 'makes them the final decision-makers' when that isn't legally correct (but the analysis is a little lengthy to include here - suffice it to say, that usually there is not in my view anyone who is 'legally the final decision-maker' for MCA best-interests decisions {only section 6(6) of the Act, creates 'final' decision-makers}).

I 100% agree with:

'Neither of us have definitive empirical research evidence (well I don't think we do) to say just how often people are involved. We therefore bring our own perspectives and experience and biases.'

We would have more and better evidence about how often people (the family and friends, and even the patient sometimes) are involved, and about what is in fact said during conversations, if the NHS would do what I suggested in my piece at:

http://www.bmj.com/content/352/bmj.i26/rr-5

'... the ECTP does not seem to want attorneys and deputies to sign to confirm their decisions - again, it wants the clinicians to do the 'signing off'.

This is both legally dubious - people should sign for whatever they are responsible for, so a clinician signs for a clinical prediction, a welfare attorney signs to 'authenticate' his/her own best-interests decision, etc - and anachronistic. This type of 'clinical control' of 'patient records' reinforces inappropriate distinctions between clinicians and involved laymen, it potentially introduces 'bias', and it definitely does not promote the necessary cooperation and integration between the clinicians, family, friends, and if they are present attorneys and deputies, which decent 'joined-up' care requires.

Once, husbands 'owned their wives' - but no longer: and clinicians do not 'own their patients'. Until patient records contain within them the 'right' signatures (at the very least, the possibility of the right signatures being present: I accept that it might be difficult for patients and family members to sign such documents, but they should definitely not be prohibited from signing them) - signatures based on authority, responsibility and involvement, and not simply on whoever happens to be 'the senior clinician' - there will in my opinion never be satisfactory integration between the many people who are typically involved in supporting, and caring for, patients.'

We REALLY DO need to get 'inside the 'official records'' 'signatures based on authority, responsibility and involvement, and not simply on whoever happens to be 'the senior clinician'.

I own a book, 'Evolution: What the Fossils Say and Why it Matters', by Donald R Prothero.

He explains in his chapter 'if [scientists] want to be taken seriously, they must play by the rules of science: get to know other scientists, exchange ideas, be willing to change your own ideas, present your results in scientific conferences, and submit them to the scrutiny of peer-reviewed journals and books. If your ideas can survive this rigorous gauntlet, then they will get the attention of scientists that they deserve'.

The next section of the chapter, is called 'Follow the Evidence Wherever It May Lead'.

Put slightly differently, you need to put in a lot of work and effort, before you rise to professional prominence.

And that 'mass of effort' which you have previously put in to becoming a respected expert, will tend to mean that you cling on to it, despite '[you must] be willing to change your own ideas'.

There is something 'deeply unsettling' if you are a medical or legal expert in what I shall term 'consent law' (without delving too deeply into terminology here, you can think of 'consent law' as being the law which protects clinicians from being accused of 'assaulting their patients' whatever the mental competence of the patient) for adults in England: the law is the Mental Capacity Act (MCA).

Tessa Ing described the MCA to me, as 'a consolidation Act'. The implication, is that it simply drew together, and tidied up a little, law which already existed. In my opinion it definitely 'tidied up' the law for consent, but it did that by INCORPORATING previous legal concepts WITHIN the new Act - the MCA is 'self-contained' and it is NOT 'an index to other laws which you need to refer to INSTEAD OF READING THE MCA'.

This is hard to come to terms with, if you are a senior doctor or lawyer, who has spent many years coming to terms with the court rulings on which the MCA was FOUNDED - because my position is that whatever of those earlier rulings was retained after the MCA was enacted, has to be [explicitly] WITHIN THE WORDING OF the MCA.

If I am wrong, then it would require 'expert knowledge' beyond what can be gained from reading the MCA itself [and taking a look at its Code of Practice] - and as that 'expert understanding' takes years to acquire, it would be illogical and DEEPLY UNSATISFACTORY for the MCA to allow for normal laymen to be appointed as Attorneys or Deputies and to then 'CONTROL' best-interests decision-making.

But the MCA DOES DO THAT - I could appoint a perfectly normal layman as my Welfare Attorney, and after a process of appointment (NOT 'training') my attorney would be empowered to make any necessary best-interests decisions.

The implication of this, is that there are not 'expert views' about 'the meaning of best-interests [as described in section 4 of the MCA']': there might be broadly 'consensus views' which are held by doctors, and similarly a broad consensus position held by lawyers, but those are not somehow 'superior and better-than' the view of best interests which a layperson arrives at. And, if everyone appointed a welfare attorney, it seems reasonable to assume that most of those attorneys would be lay - so, as attorneys make the best-interests decisions, doesn't that if anything, seem to make the 'best/'expert'' viewpoint, the lay viewpoint ?

This is not quite like the 'refinement' of a scientific theory: for example, when Newton's theory of gravity was 'overtaken by' Einstein's theory of gravity (General Relativity), for almost all day-to-day calculations, Newton's theory still worked fine. That isn't what the Mental Capacity Act did: the 'understanding before the MCA' and the 'understanding after the MCA' are different for many 'everyday' applications of the law.

Before the MCA, there was a long and in my view 'TOO logically unsatisfactory' period which probably drew to an end somewhere between about 2000 and 2010, when we had a series of 'legal beliefs or principles' which were too contradictory. Without including all of the references, but including the 'pointers' to the references, the situation was:

* The idea that patients had to give consent to treatment existed, but ('Bolam') doctors were allowed to decide how much clinical information they provided, and there was certainly an acceptance of a degree of 'medical paternalism' [in that doctors could legitimately, to use my phrase, 'not describe 'bad outcomes' which might make patients refuse 'good treatment options''];

* There was a very strong - you could reasonably say 'almost determinative' - resort to 'keeping the patient alive' whenever there was an element of 'doubt' (this is difficult to describe, but people who have read the court cases, will understand my point);

* There were some 'very vague concepts' such as 'shared decision-making' which had been developed by clinicians.

What the MCA has done, although this is still being accepted somewhat slowly by clinicians and other professionals, is not to resolve all of the problems, but to change things so that legally:

* We now have Informed Consent for patients unless they have been 'proven mentally-incapable' - and informed consent requires disclosure of all clinical information which might (if judged afterwards) have resulted in the patient making a different decision AS JUDGED BY A PEER OF THE PATIENT (i.e. 'Bolam' has gone) [see rulings by Mr Justice MacDonald and the 'Montgomery' ruling];

* Suicide of itself, is no longer considered to be proof of mental incapacity [see an interview Justice Sir Mark Hedley gave to a newspaper], and if capacity is judged absent, 'preservation of the patient's life' is no longer as determinative in an assessment of the patient's 'best interests': this, if anything, makes the situation more complex in practice, because 'the patient's 'individuality'' can now be placed above 'preservation of life' but although we are now absolutely certain of that from court rulings [and because the MCA does not state that section 4(6) does not apply when considering life-sustaining treatments] it is often very difficult to 'determine' 'patient individuality' and it is even harder to clearly explain HOW this new balance/decision between the duty to apply 'patient individuality' and 'preservation of life' is to reached;

* The MCA is much clearer about decision-making - which is almost never the medically-developed concept of 'shared decision-making' (to be fair, the concept was developed before Informed Consent was 'definitively described/defined' in English law). It is also clearer about the 'ranking decision-maker' if a welfare attorney or court deputy has been given legal authority over the decision being made (see sections 6(6) and 6(7) of the MCA).

I will, in fact, include three references.

The 'Sir Mark Hedley told a newspaper' comment is too hard to 'track down' so I'll point at a piece of mine where I give the necessary details:

http://www.bmj.com/content/350/bmj.h2883/rr-2

I have written a little about 'shared decision-making' at:

http://www.bmj.com/content/349/bmj.g4855/rr/761712

One of my BMJ pieces is titled 'Mental Capacity Act: the concepts of consent, representation and mediation disentangled' and it is relevant:

http://www.bmj.com/content/352/bmj.i222/rr-0