This is why professionals struggle with the Mental Capacity Act

Hi Mike
As ever a very cogent and structured narrative that clearly sets out the issues that need to be debated. It does seem to me that we need to try and take this further somehow and I am not fully sure how. Have you got any suggestions, one that I can think of is to try and raise this in our next newsletter, with a short piece that links to the issues and perhaps longer narratives. Would you feel able to write something for that forum. It would need to be no more than 150 words for the newsletter but then we can put links in to longer articles, if people want to explore it more. At least that way it would get it out to a much wider group of people. What do you think.

Hi Liz,

I'm currently in the process of 'trying to debate it' - I sent a survey of 2 questions to almost all of England's CCGs a couple of weeks ago, and also to a selection of GP Surgeries: there are some revealing responses coming in, and about mid-September I shall be sending out the report.

I'm about to run out of online time until later today, when I'll probably come back to this (failing that, over the weekend).

By the way, somewhere else on here (probably the poem one) I asked if you and Rochelle would e-mail me, as I would value both your opinions about something (Rochelle has e-amiled me already).

Hi Liz, I'm still struggling to figure out, how to fit anything 'meaningful and useful' about EoL/MCA into 150 words.

I certainly can't do an instructive piece, or a 'summary' in 150 words.

But I could perhaps do a 'question' - can I do, a question, or isn't that what you were looking for ?

The question would essentially be based on Sarah Morpeth's 'comment':

'In my view, the medical team's role should be to give advice; the people best placed to decide on a person's 'best interests' are surely the family, taking into account the medical advice. The current law seems to me to enshrine an outdated paternalistic attitude that we lay people are not capable of making decisions or taking responsibility. Indeed I have been patronised by a range of doctors during discussions of 'escalations of care' who have told me that it's best for me to have the 'burden of responsibility' taken off my shoulders. I actually think that the medical team should have the burden of responsibility taken away from them.'

I think I could add in the 'context', and ask 'Do people agree with Sarah', and just about get it down to 150 words ?

Hi again Liz,

I thought about your suggestion this morning, and the best I could come up is shown below - but it comes out at 180 words.

The point about this one - which I'm pretty certain I cannot compress any further - is that it doesn't 'limit' the 'level of the responses': it could equally well attract 'I've been in that position, and it is very upsetting and frustrating if you are the relative' , or it could attract answers 'dissecting the Mental Capacity Act'.

There was a BBC radio programme, about how the decisions for medical treatment of dementia patients, who cannot decide for themselves, are made. In a comment about the programme (it can be found at http://www.bbc.co.uk/programmes/b04brpdk ) Sarah Morpeth has explained that doctors and nurses tell relatives that the clinicians consult with the family, but then the clinicians make the decision (technically, this is a 'best interests' decision). Sarah believes this is fundamentally wrong: Sarah believes that the doctors and nurses should explain the clinical outcomes with and without the possible treatment to family and friends (the people who really know the patient), and that then the family and friends should decide what should happen.
I agree with Sarah - I think the fundamental principle, is 'we should do what the patient would have decided, if the patient could have decided' - and it is the family and friends ('those close to the patient') who are the only people who 'can legitimately think 'in lieu' of the [mentally incapable] patient'. Who is right about this - the doctors and nurses, or Sarah ?

Hi Mike, haven't got your email saved to my phone, I've just read this and thought you might be interested
TY for all the feedback about my new blogpost. Resus is a topic we need to talk about without media scaremongering: http://t.co/l8BYk253yl

Rochelle

Hi Rochelle,

I've just followed your link. I think I was already aware of Kate Granger - she has been 'media prominent' since making her DNACPR Decision.

In about 2 or 3 weeks time, I'll be sending out a report about some questions I recently sent to Clinical Commissioning Groups. I've got you on the distribution list - but I hope you've got a computer, as it wouldn't be good on a phone (although I say that, as someone who does not have a mobile phone - so what do I know !).

The Mail has just chipped in with a complaint about nurses asking elderly patients about their wishes re resuscitation, and caused another 'storm' - although this time the Mail seems to have a point, as it looks as though some piece of 'tick-box idiocy' has led to nurses inappropriately 'suddenly dropping the question on people'. It all gets quite complicated.

Best wishes, Mike

file:///P:/Child/Downloads/The_Core_Care_Team_by_Mike_Stone_with_introductory_letter.pdf

I'm wandering a bit here - but I just put 'core care team mike stone' into Google, and it opened the CCT piece which is elsewhere on this DIC website: I'm just interested in whether that link does indeed directly download the piece, so I'm posting it and will 'test it' tomorrow. If it works, it will go into my 'CCG report', etc.

Hi Mike

Sorry have been really busy and have not been responding to your posts as I should. I did get your email and will respond later today or tomorrow, it depends how far down my urgent list I get today. However thanks for struggling to get the issues encapsulated. I shall certainly use your piece in our next Newsletter. I'll also work through the rest of your post [and Rochelle's] and try and put together a cohesive comment.

Many thanks again for running with this.

Liz

At some stage during the next few weeks, I will be adding a piece to this.

I am currently working my way through the DoLS Consultation and sending bits of comment to it, but it has reminded me of something I 'sort of forget'.

I 'think from' the situation of an end-of-life patient who is mentally-capable at diagnosis, and could in principle 'make his own decisions about future care, and by elaborating those decisions extend his patient self-determination into any periods of mental incapacity which might occur as he nears death'. The problems - especially for patients who are in their own homes - then hinge mainly on communication: you need to ask and answer questions such as 'if the patient explains his decision about a refusal of a possible future treatment to only a relative who is living with him, because the relative is there and nobody else is in the home, why should that 'somehow count less than explaining the decision to a GP ?'.

But although everyone will die, most clinicians who routinely encounter MCA best-interests decision-making come across it in a very different context: either long-term mental incapacity such as dementia, or mental health. These are fundamentally different, because in this situation the patient cannot be the decision-maker - the problem then, is 'figuring out exactly what section 4 of the MCA means' if someone other than the patient, is making the decision.

I need to write something up, taking much more into account those different 'starting points' - it isn't as if I was not already aware of them, because in no 11 of my 'Thinking Clearly' series of PDFs which I created late in 2012, I wrote at the start of it:

'I am interested in sorting out the easier bits first (or, possibly, only): and the easiest situation is a patient who retains mental capacity until he loses it either when he arrests, or as he approaches death.'

But this is VERY significant: the problems facing a doctor or nurse works in dementia or mental health, are very different indeed, from the problems which afflict my 'area of interest' of 'end-of-life at home', so 'we instinctively look at things differently, because we start from different places'.

But I should add, that I think my analysis as presented in the downloadable file, is still correct (the complexity, falls within the requirements of best-interests decision-making - and my explanation of who could make a BI decision, and where a BI decision fits, is still correct so far as I can see). The complications which i had not answered - and which nobody properly understands, judges included - involve the questions such as:

'How far should the 'opinions, wishes and feelings' of a person deemed to be mentally-incapable [and therefore not self-determining in connection with the decision being made], guide the best-interests decision which another person is making ?'.

That is enormously tricky to formalise in any way - it is a world away from 'we are not going to attempt CPR, because he made it 100% clear to us yesterday, that he would refuse CPR if he arrested for any reason whatsoever - and as one of us has been here all of the time since then until he just arrested, and he did not tell anybody he had changed his mind, we know he had not withdrawn his decision to refuse CPR'.

Dementia simply cannot be made to fit with my 'first principle of EoL behaviour', which I explained at the end of the BMJ piece at:

http://www.bmj.com/content/347/bmj.f4085/rr/652862

'A huge advantage of talking to patients 'early', is that you can get clear decisions from the patient about things such as attempted cardiopulmonary resuscitation in the future - then, you can tell everyone involved what the patient has decided, and everyone can just follow the patient's decisions, which is much less challenging than to try and make
decisions in lieu of the patient, whoever is trying to make such 'proxy decisions'.'

WHAT WE KNOW FOR CERTAIN about the Mental Capacity Act and Section 4 Best Interests

Before I get round to an analysis in a subsequent piece, it will help if I list the things we know for certain about the MCA and its 'best-interests test' (being 'picky', section 4 imposes 'a best-interests requirement': I tend to think of best interests as imposing a 'test' while many doctors and nurses think section 4 imposes a 'best-interests process').

What We Know for Sure:

K1) Mentally-capable patients are allowed to exercise self-determination: the MCA attempts to allow the projection of this self-determination forwards into periods of future mental-incapacity which have been anticipated and considered by the patient;

K2) Mentally-incapable patients are not viewed as self-determining, subject to the 'projection into incapacity' mentioned in 1);

K3) MCA section 4 best-interests decision-making is legally required if a patient is mentally-incapable: and, whatever 'making an adequate best-interests decision involves', normal laymen must be capable of doing that (this is a logically necessary consequence of sections 6(6) and 6(7) of the MCA, in combination with 'most welfare attorneys will be [or at least could be] laymen, and attorneys are 'not trained-up for the role'');

K4) Although section 4 of the MCA, covering 'best-interests decision-making', is conceptually unclear because it involves a balance of principles, section 42 of the MCA (which covers which categories of person 'must have regard to' the MCA Code of Practice) is entirely simple: section 42 is 'a simple and straightforward list';

K5) Although section 4(5) of the MCA is challenging to interpret, we know 4(5) doesn't say 'a life-sustaining treatment cannot be withheld as the result of a best-interests decision': nor does it say 'when considering a life-sustaining treatment you must disregard section 4(6)'.

The following, to an extent introduce 'a logical position' - unlike the above, these 'surely make sense' even if they cannot be '100% proven'

K6) If the concept of 'best interests' 'has a fundamental and deep meaning', it would be irrational to believe that if all of the practically-discoverable information for any given situation had been discovered (put simply 'that we know everything that we could know about the situation') the best-interests decision should vary with the decision-maker: surely, if we changed the person making the decision, but kept the information relevant to the decision unaltered, that should not affect the decision.

So 'a best-interests decision should [in principle] be invariable with respect to the decision-maker';

K7) There is a legal concept referred to as 'the doctrine of necessity' - it is the concept which allows a paramedic to treat an unconscious person who has fallen off a ladder 'without formally obtaining patient consent'. This concept is not consistent with the logic of 'advance care planning' - so the MCA seems to imply, that if you are aware that a patient might lose mental capacity, 'you are required to plan ahead with the intention of avoiding any application of 'necessity'';

K8) Not part of the MCA, but relevant to my end-of-life issues: any situation which is 'end-of-life' must have at least one cardiopulmonary arrest (CPA;

K9) Again an 'assumption', but relevant for both MCA and EoL - it cannot be the 'intention of the law' that most end-of-life situations, or most other situations where patients are mentally-incapable, should involve court applications (there would simply be too many cases going to court).

***************************

'The System' is really attached to the idea that there is 'a definite decision-maker', and it attempts to impose the senior-available clinician as the decision-maker in most situations. I disagree, and to me it seems very clear that section 4(9) is a legal duty, that the MCA imposes a duty to comply with section 4 on everyone, and that there is no basis to claim that involved family carers cannot legitimately make best-interests decisions about the provision of offered medical treatments.

But if K6 above is correct, and I see no reason to challenge K6, then this is interesting to think about:

Imagine that a wife develops dementia. Some time later, her dementia has reached the stage when everyone agrees she cannot make her own decisions about medical treatments, and the wife's GP and her husband are in the home. The GP thinks the wife should be sedated, but the husband does not agree that his wife should be sedated. Also, before the wife lost mental capacity, an application was sent off to make the husband her welfare attorney, and this application 'is still being processed' so far as the husband and the GP are aware.

The system, and most doctors and nurses, consider that in this situation, the GP can sedate the wife, because 'after consulting the husband, the GP is the person who makes the best-interests decision'. So, imagine that just as the GP is about to sedate the wife, the letter confirming the husband's appointment as a welfare attorney drops into the house through the letter-box. Immediately, once they open the letter, the husband's decision that it is in his wife's best interests to not sedate her, becomes 'the correct best-interests decision'.

The decisions considered to be 'in the wife's best interests' made by the GP and the husband were different, and were unchanged by the arrival of the letter, but the husband's decision 'leaps in a single bound' from apparently being irrelevant, to being the decision to be followed. I realise that 'the system' will claim I'm being lax with words here - they claim the husband was 'being consulted by the GP, and the husband never made a decision' but his idea of what would be in his wife's best interests, did not change (and also being picky in return, the GP and the husband, have clearly both got opinions about what would be 'in the wife's best interests').

That 'leap' seems 'rather weird'.

It is very difficult to analyse the legal situation before the letter arrives - section 6(7) makes the situation simple after the husband becomes a welfare attorney, but the MCA doesn't help with disagreements between families and clinicians (and recourse to courts for a ruling, seems problematic as I pointed out in K9).

But I feel sure about one thing - if a GP is doing things to the wife, and the husband objects, then that isn't going to help with 'a good relationship between the GP and the husband'.

I have just written a piece, about whether the MCA is 'substituted decision-making' or 'supported decision-making'. The piece was prompted by a current Law Commission Consultation, which states that the MCA is based on substituted decision-making: I do not entirely agree:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=793&forumID=45

There is quite a lot of mention of the concept of 'an advance statement' in the Consultation, and clinicians seem to very keen on this idea of 'advance statements' (not to mention, that they often confuse the term, with 'advance decisions', in very unhelpful ways: this is confusing the patient having made the decision and projected it forwards into subsequent mental-incapacity, and the patient having simply contributed something which will be considered as part of a best-interests decision-making process). My piece about Advance Care Planning, yet to be written, will feature 'advance statements', but I will make some preliminary comments.

The term 'advance statement' does NOT appear in the MCA - it seems to 'arise' from section 4(6) of the Act, which is the fundamental guide to how a best-interests decision should be made:

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.

Now, PLEASE GET THE POINT: section 4(6)(a) is stressing the importance, IF YOU ARE FIRST READING THEM AFTER THE PATIENT HAS ALREADY LOST MENTAL CAPACITY, of reading 'relevant written statements' which he wrote previously while he was mentally capable.

That is NOT a strong invitation, as clinicians seem to think it is, to 'invite capable patients to write 'advance statements'', and then for other clinicians to subsequently read and interpret those 'advance statements'.

Whatever a capable patient records on paper - either an Advance Decision [which is what a patient should think about first] or this more problematic 'advance statement' - any people who are at that time (when the patient writes the document) in contact with the patient, CAN ASK THE PATIENT WHAT IT MEANS. You can read what the patient has written, and then say to him 'To me, this seems to mean ....' and if your understanding of what the patient had intended to convey is wrong, the patient can say in return 'No, what I was trying to get across is ...'. And the patient understands what he was trying to express, better than any reader.

THIS IS FUNDAMENTAL: if you can discuss the meaning of anything written by someone, with the author, you can ask each other questions, and at the end of that verbal discussion, you (with luck !) understand what the person was trying to tell you BETTER THAN BY JUST READING HIS WORDS - true if he has written an Advance Decision, or anything else in general.

So a DISCUSSION with a patient about his instruction is better than simply reading his instruction when he can no longer explain it to you (the situation with a written Advance Decision): it is much more complicated if the patient is expressing the vaguer 'wishes and preferences', but the principle remains.

The point, is that the people who had things explained to them by the patient while the patient was mentally-capable, are able to understand things better than anybody who is simply reading things after the patient has lost capacity - this LOGICAL TRUTH somehow DISAPPEARS, within a lot of 'process-based' absurdity, I keep coming across in clinically-authored writings about end-of-life.

I wrote earlier:

'That is NOT an invitation, as clinicians seem to think it it, to 'invite capable patients to write 'advance statements', and then for other clinicians to subsequently read and interpret those 'advance statements'.'

What the MCA implies is an imperative that the people supporting a patient who it is believed might lose mental capacity, should make strenuous efforts to learn about the patients decisions, wishes and preferences, and to UNDERSTAND THOSE THINGS: and 'understanding is inside a person's head'. Contemporary 'solutions' to the intricate problems posed by end-of-life, fail to address the problem I highlighted at the end of my piece at:

http://www.bmj.com/content/350/bmj.h2877/rr

My Core Care Team approach, is the logical solution to that problem: it is based on prioritising communication and understanding, and NOT on 'formalised record-keeping processes'.

ADVANCE CARE PLANNING and CARE PLANS

I can't help feeling that I could describe this better, using a PDF: but as we can no longer upload files, I'll have to do it 'plain-text and narrative only'.

The NHS tends to 'add specialised meanings' to what seem to be 'normal phrases', but there are clues in words.

Consider 'advance decision' as used in sections 24-26 of the MCA: the clue in there, is that the decision has already been made in advance (by the patient).

Advance Care Planning (ACP) and Care Plans are both clearly something to do with 'planning ahead'. In one aspect, this 'planning ahead' involves something obvious:

'The System' (the people who are organising and providing services) needs to think about what the service users might require, in order to provide the right services. I am not going to discuss this any further - it is outside of my main area of interest, and it has got nothing to do with the MCA.

ACP and Care Plans do involve using (at least potentially) those provided services (and you obviously cannot take advantage of, a non-existent service). But if the service user (the patient) is mentally-capable when a choice is being made, you can simply ask him to make the decision: so mentally-capable patients, make their own choices between offered services, and between offered treatments or interventions. This means that ACP is about planning the services available, if patients are mentally capable.

ACP in combination with MENTAL INCAPACITY

There are 3 obvious situations, when ACP will combine with mental incapacity, and of course the 'rules during incapacity' are those within the MCA:

1) A person is believed to be nearing the end of life, and although mentally-capable when this is first known to be the situation, might lose capacity as death nears;

2) A person who had lost capacity a long time before nearing the end of life, is identified as nearing the end of life (often, this will involve a long-term dementia patient);

3) A person has episodes of mental incapacity but isn't end of life: this is often the case with mental illness.

The problems - and the way the people involved - are fundamentally different, for these 3 situations: and to complicate matters, I think most of the clinicians who are relatively familiar with the MCA, are in normally involved with situations 2) and/or 3).

The problems are:

1) The basic issue here, is simply that MCA best-interests decision-making is a very complex and disputed process, so the 'problem' is 'how do we avoid unnecessary best-interests decision-making ?'. The obvious solution, is to try and get the patient to make the necessary decisions in advance, to inform everyone 'closely surrounding and supporting the patient' of those decisions, and then to simply follow the decisions the patient has already made.

2) The problem with 2), is that the long-term incapacity, probably makes it impossible to use the solution for 1) which I have just described: so we cannot avoid best-interest decision-making, and we are forced to engage with section 4 of the MCA. This needs much better understanding and agreement about what 'best interests' means and involves, and I have written about that endlessly. But this is a patient who is almost certainly dying - so we are not going to 'cure' this patient, and a major factor must be 'trying to make the process of dying as non-traumatic as possible for the patient, and to not leave the family and friends with 'very bad memories''. I could elaborate at length on the previous sentence - it is much more complex, than some possible simplistic interpretations of my words - but I am not going to, here;

3) The typical issue here, is intervention to prevent either self-harm or harm to others, when a person is mentally ill: often, the intervention will be because, to use my phrase, 'a patient has asked for help, to deal with suicidal thoughts the patient is having'. The hope here, is to prevent the harm and to 'cure' (I am using the word in a lay sense) the illness which is afflicting the patient.

Situation 3) is very complicated, and situation 2) is also complicated: but not in identical ways. And 1) is fundamentally much simpler - if only 'the professionals' would do two things:

Accept the patient's decisions;

Accept that the patient's family and friends are equal partners to, but 'differently knowledgeable from', the clinicians.

There is currently a very 'offensive attitude of distrust of relatives' which needs to be swept away, so that family and clinicians can work together in order to support end-of-life patients:

http://www.bmj.com/content/350/bmj.h3181/rr

http://www.bmj.com/content/350/bmj.h3181/rr-2

There is also something about best interests, and indeed about the MCA, which is worth commenting on. Very often, people become 'tangled up' thinking about how to resolve a clash between two different laws. This is often true where the law(s) in question, describes a principle as opposed to a rule.

Looking at the MCA, some parts, such as section 4, describe 'principle': by contrast, sections such as 6(6), 6(7) and 42, are 'clear rules'.

There is a problem, with the writing down of principles - see:

http://www.bmj.com/content/350/bmj.h1481/rr-22

where I pointed out '... judges sort out the principles in their own minds, and then are forced to try and explain these principles using words (a process, which is not without its problems)'.

It strikes me, that the MCA uses too many words, to explain certain concepts. The MCA is about mental incapacity, not mental illness. In that context, I think section 2(1) should not have been included:

2(1) For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.

It would to me have made more sense to frame the MCA in terms of 'a person is mentally capable if he can do what is described in section 3(1), and he is incapable if he is unable to do that':

3(1) For the purposes of section 2, a person is unable to make a decision for himself if he is unable-
(a) to understand the information relevant to the decision,
(b) to retain that information,
(c) to use or weigh that information as part of the process of making the decision, or
(d) to communicate his decision (whether by talking, using sign language or any other means).

Simple question: if we believe that both 3(1) and 2(1) apply, if a person very obviously cannot satisfy 3(1), then he clearly cannot make the decision himself - so why do we need 2(1) ? If we can see that the person cannot make the decision for himself because he clearly doesn't satisfy 3(1), but someone argued 'but he doesn't have 'an impairment of, or a disturbance in the functioning of, the mind or brain'', then WHO makes the necessary decision ? Besides which, it isn't easy to figure out what is going on inside a person's mind or brain - all you can usually do, is ask 'does the person seem to be lucid ?'.

Arguably section 2(2) is unnecessary:

2(2) It does not matter whether the impairment or disturbance is permanent or temporary.

It is only possible to make a decision, whoever makes it, at the time it is being made: either the person (patient) is capable at the time the decision is being made, in which case he makes the decision himself, or he isn't (in which case someone has to make a section 4 best interests decision).

If you think 2(1) is necessary, the concept is already inside 2(1) anyway: 'if at the material time he is unable to make a decision for himself'.

Proof-reading again.

'The problems - and the way the people involved - are fundamentally different,'

in my previous piece, should read

The problems - and the way the people involved think - are fundamentally different,

I really do wish, that my hours of attempts to proof-read, were more successful !

'But it's a duck !'

I keep coming across, for Mental Capacity Act and End-of-Life stuff, opinions which are similar, yet still fundamentally different. It is as if I'm looking at a bird swimming on a lake, and the person next to me says "Look at that goose" when it is very obviously not a goose, but a duck.

There is a phrase used in sections 6(7) and 26(5) of the Mental Capacity Act:

'while a decision as respects any relevant issue is sought from the court.'

That wording looks 'enormous' to me - I see it as saying 'everyone is supposed to follow the decision of an Advance Decision, or the best-interests decision expressed by a Welfare Attorney, and because we expect you to follow those decisions, you MUST apply for a court ruling if you decide to not follow those decisions'.

But many healthcare professionals, 'seem to fail to see those words at all'.

I don't see anything in the Act, which defines who can make section 4 best-interests decisions: all I see is a requirement that to be legally-protected, if you make a best-interests decision you must be able to claim to have reasonably complied with section 4 of the Act. I have no idea what some healthcare professionals see, but they don't seem to see the same section 4 as I do.

I read section 25(4) of the Act, and it appears to me that I have a clear legal right to refuse any potentially offered treatment, so for example I should be able to refuse attempted cardiopulmonary resuscitation irrespective of how ill I am, or of how likely I am to suffer a cardiopulmonary arrest, or of whether or not the death could be certified - while that is obvious to me, when I read the Act, it doesn't seem to be what many doctors, nurses and paramedics see when they read (or, more likely, if they read - it is far from clear, that most healthcare professionals read the MCA itself) the Act.

I keep seeing a duck, when other people see a goose: this isn't necessarily as simple as 'I want to see a duck, and they want to see a goose' [although there could be an element of that involved].

People keep telling me that the decisions which Welfare Attorneys possess legal authority over, are 'clinical decisions': I see 'utter madness' in that claim, because welfare attorneys are not required to have any clinical expertise, so any decision a welfare attorney could legally be given decision-making authority over, cannot be correctly described (or thought of conceptually) as 'a clinical decision'. Even if the decision is being made by a clinician, MCA section 4 best-interests decisions, are definitely NOT 'clinical decisions'.

Until everyone can agree that we are looking at the same creature swimming on that lake, be it a goose, duck, or the exotic gock, end-of-life behaviour will possess all of the internal consistency of a game where one side turns up thinking it is playing football, the other side thinks the game is rugby union, the pitch is marked for hockey and the referee thinks the game being played is rugby league.

There is currently a piece of draft guidance from NICE, out for consultation.

NICE are very keen on 'the evidence base': the consultation goes into great detail about what evidence was considered, how the 'value' of evidence was decided, etc. The guidance has also identified the difficulty of predicting how soon a patient will die (and, earlier, if the patient will die or recover) as a major problem - and the NICE solution, is in essence to try and refine the 'monitoring of the patient' (in other words, clinical observation) so that this monitoring, more accurately predicts how close to death a patient is. To develop 'predictive tests' for death.

I really must point something out, which NICE seems to ignore: INTERVENTION IS BY INVITATION.

I'm bothered about patients who are dying at home, and it was very clear to me, that my mum didn't really want any intervention at all when she was dying: she just wanted 'to die at home' and she didn't want a home full of nurses, or in even to be treated - she just 'wanted to be left alone to die'. So how does improved 'monitoring' help, if patients don't agree to being monitored ? How would a predictive blood test help, even in a hospital, if the patient said 'I'm dying, and I'm not willing to be used as a pin cushion - go away, I forbid you from taking any more blood samples'. How can a nurse 'observe the patient', if the patient says 'I'm dying, I want to die quietly at home, if I need your help I'll ask you, but my death isn't a spectator sport, so go away and stay away until I ask you to come, because I don't want you in my home - I want to be on my own, or with my family, but not with you' ?

WHY DO THE PROFESSIONALS IGNORE SUCH VERY OBVIOUS COMPLICATIONS ?

I am of the opinion, that dying people invite clinicians to help - I am not of the opinion, that inviting clinicians to help while you die, automatically implies that you have invited the clinicians to take control while you die.

I thought it was 'the patient comes first' and that the healthcare system, is supposed to fit in with that concept ?

I didn't think it was 'patients are obliged to do what is convenient for the healthcare system' - especially if the patient is dying !

I was considering posting this as a separate piece, but I've decided to add it here.

Quite a number of things, have happened since I originally wrote the analysis of the MCA - and I'm pleased to say, they all seem to support what I wrote earlier, above.

The most recent, which I heard on the news only yesterday, was a court ruling which will doubtless come to be known as 'Winspear'. It was reported online at:

http://www.bbc.co.uk/news/uk-england-tyne-34812560

http://www.itv.com/news/tyne-tees/2015-11-13/bereaved-mother-wins-court-case-over-do-not-resuscitate-order-for-disabled-son/

The first of those, contains probably 'all we [really] need to grasp':

'A 'do not resuscitate' (DNR) order put on a disabled man's records without consulting his mother breached his human rights, the High Court has ruled. ... The High Court ruled the 28-year-old's human rights were violated by a failure to involve his mother when the DNR order was made at 03:00 GMT on 3 January 2011. ... [Mrs Winspear's] lawyer Merry Varney said imposing a 'Do Not Attempt Cardiopulmonary Resuscitation' order was a "sensitive and important decision".... "Now the courts have made it very clear that it is not a decision for doctors to take alone," she said.'

However, this ruling seems to have been reached under Human Rights legislation, while I think the same conclusion can be more easily arrived at simply by reading the Mental Capacity Act: for some reason, far from clear to me, lots of cases are now going the HR 'route' (perhaps the HR law is easier to utilise, to bring a case - possibly, because in legal terms, the MCA is recent).

There was another recent ruling, about a patient who was not judged mentally-capable to make his own decisions (which must have also been true for Carl Winspear) and when in essence, a judge decided that instead of amputating his gangrenous foot and keeping him alive, he should be allowed to [probably] die without an amputation - I wrote a comment about that case on the BMJ, and the crucial statement from the judge is in it:

http://www.bmj.com/content/351/bmj.h5242/rr-0

I titled my comment 'This decision is part of a trend toward looking at decisions more from the perspective of the patient' and I wrote that:

'Without trying to list my proofs - which are rather lengthy, and somewhat 'nebulous' - I consider that this decision is part of a recent trend: judges are now placing more stress on 'what the patient, even if not mentally capable, wishes to happen' compared to 'what looks like the best clinical decision'.'

The 'Montgomery' case, has made clear that it is for patients to decide whether the risks of accepting or refusing an offered treatment, are acceptable - and that this is very much 'seen from the perspective of the individual patient, and cannot be decided by clinicians on the basis of either their own views, or by considering 'a sort of average patient''.

Montgomery tells us, that the rule for mentally-capable patients is definitely Informed Consent: that doctors and nurses must explain the risks and benefits of offered treatments (and of no treatment) to patients, and that then the patient makes the decision.

Winspear makes it clear that for patients who are very mentally impaired, and who cannot make their own decisions, 'people who know the patient well as a person' must be involved in the decision making.

The other ruling, about the possible amputation, promotes the standpoint of patients judged unable to actually make their own decision, but who 'do have strong views and feelings' - the rationale reported for that case was:

''"(The pensioner) has had a hard life. Through no fault of his own, he has suffered in his mental health for half a century ... He has no next of kin. No-one has ever visited him in hospital and no-one ever will. Yet he is a proud man who sees no reasons to prefer the views of others to his own," said Mr Justice Jackson.
"I am quite sure that it would not be in (his) best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no-one else would have to endure."'

There is still - whatever anybody might tell you to the contrary - a 'huge cloudiness' to the decision-making process, when a best-interests decision is being arrived at. As I made clear in the file (downloadable from my first piece here) where I wrote about the MCA and end-of-life, if at all possible, it is MUCH EASIER to 'get the patient to make the decisions while the patient is still mentally capable, and to follow them if capacity is subsequently lost (which, in essence, is 'try to get the patient to cover everything important, with Advance Decisions'). Although, in fact I mean 'it is much better, IF THE PATIENT has decided everything in advance' - you must NOT try to force patients to do this, it is simply far easier if they do it. You cannot adopt that approach, if the person has been mentally-incapable for years, or never was mentally-capable (long-term dementia, etc).

The 'cloudiness' - as exemplified by 'where Mr Justice Hayden stopped' in the piece I mentioned in that downloadable file - is that for serious decisions, which involve life-sustaining or life-changing treatment, we still don't fully understand, HOW you get from 'the decision must involve both the clinicians and those who know the patient well as a person' TO 'the decision'.

If there is a Welfare Attorney or Court Deputy whose powers extend over the decision, the attorney or deputy 'makes the decision' - otherwise, I don't think there is even a 'defined decision-maker' (most clinicians, disagree with me).

But, if we know that the clinicians, and the family and friends, should all be involved (something almost everyone does agree about), and we wish to avoid 'sending everything to a court for a ruling', and despite the fact that clinicians and laymen 'might be coming from different places', we can 'work from that' - and, WITH A FAVOURABLE WIND, 'get somewhere'.

I explained something about this 'coming from different places' in my piece at:

http://www.bmj.com/content/350/bmj.h1481/rr-22

My 'working with that' is to 'involve the clinicians, and everyone who really knows the patient as a person, tell the clinicians to explain all of the clinical outcomes to the close family/friends, ask the family and friends to say what should happen' - and the 'favourable wind' is the [hoped for and 'happy'] outcome of 'the family and friends, ALL agree'.

Then, just accept the [unanimous] decision, do NOT 'claim there was a decision-maker' (record who was involved, and what the decision everyone agreed with was), and then act on the decision.

WHO - if people did that - COULD COMPLAIN ?

If the doctors had asked Mrs Winspear about the CPR decision, and the clinicians, Mrs Winspear and any other people close to Carl, had all agreed with each other, who could take the decision to a court, for a ruling ?

A unanimous decision, simply has to be 'the best one', PROVIDED you involved ALL of the 'right people' (not easy to define 'the right people' - but 'anybody whose opinion a judge would pay serious attention to, if the case went to court for a ruling' is one of those people.').

There is one complication - some doctors still seem to think 'quality of life decisions' can be made by them, despite Montgomery, etc, making it clear that 'quality of life' is outside of clinical expertise - see my piece at:

http://www.bmj.com/content/348/bmj.g4094/rr/702748

Part of that piece is:

'But there are many issues: I am only happy with 'clinical DNACPRs' if the term means 'attempted CPR would definitely not restart the heart'. But many clinicians wish to add 'or would be futile', with 'would be futile' meaning 'or would only restart the heart for a few hours or days'. How, objectively, is that 'few' to be decided: an hour, a day, 3 days or what ?

And it isn't for clinicians to decide whether restored life but of a 'clinically poor quality' would be acceptable to the patient: that decision falls to either the patient if mentally-capable, or to a proper Mental Capacity Act 'best interests' decision (which cannot be made by clinicians in isolation from 'those who know the patient as a person': in fact, the ideal 'best interests decision' would be a decision that everyone involved supported and agreed with - in which case, it would not be 'made' by any particular individual).'

As I wrote in that BMJ piece '... or to a proper Mental Capacity Act 'best interests' decision (which cannot be made by clinicians in isolation from 'those who know the patient as a person')' - which does look rather like the ruling in Winspear, doesn't it ?

And the Tracey ruling, in essence said that doctors should inform patients, if doctors believe that attempted resuscitation would not succeed.

There is still some way to go (a long list of things needs to be sorted out: DNACPR Forms, expected/sudden [home] death, EPaCCS 'versus' EoL Community Death policies, etc) - and clinicians [and other professions] are still reluctant to accept the 'loss of hierarchy and unambiguous decisions' which following the MCA as it is written, would involve - but, as I wrote at the end of

http://www.bmj.com/content/351/bmj.h5242/rr-0

Judges are slowly making it clearer, what section 4 of the Mental Capacity Act, means. And about time, too.