Mike’s Cheeky Blog: the BBC Radio 4 broadcasts about ‘Mr C’.
On Tuesday, there was a drama followed by a discussion, about the ‘Mr C’ court case: the court case had a major influence on our mental capacity law. I am sending an e-mail to two of the people involved with the broadcasts, and I have decided to publish this explanation of ‘how the Mental Capacity Act struck me, as a 'family carer/potential patient', when I read it’ here, instead of in the e-mail.
I started with the MCA – I started in 2009, and I read the MCA ‘from scratch’: I did not read it, with any context of earlier court cases – although I did have a strong assumption that ‘Informed Consent’ was our law. Or, put another way, I wasn't hampered by any existing ideas about mental capacity law. So I read the MCA, ‘worked out what it seemed to mean’, and only later stumbled across things such as ‘Bolam’ and terms such as ‘substituted judgement’. I have also read quite a lot of the interpretations of the MCA which are written by clinicians. My thoughts are these.
I was not happy, when I came across ‘Bolam’: it was ‘in essence patronising and not compatible with Informed Consent’. And the MCA clearly describes Informed Consent in its section 3 – although it does not use the term. The Montgomery ruling, in 2015, has made clear two things: that ‘Bolam’ does not apply to consent, and also that Informed consent has been the law since before the year 2000 – which ‘proves’ that the MCA does indeed describe Informed Consent in its section 3.
It is the section 4 ‘best interests’ requirement of the MCA which I write about the most, and I must admit that I am troubled by the MCA’s best interests. What irks me, is not that it doesn’t make sense – it does make sense – but that it seems impossible to describe best-interests with adequate clarity. It is a logical necessity, that normal lay people must be able to understand what section 4 of the MCA is saying – it follows from the fact that if there was no such assumption, the Act would not allow normal people to be given the authority over best-interests decision-making which is acquired on appointment as a Welfare Attorney (those attorneys acquire legal authority - but they do not suddenly acquire clinical or legal expertise as well). So, it should be possible to describe best interests ‘in normal language’ - I can’t do that. I can explain ‘what best interests isn’t’ in normal language – but I can’t explain, what it is!
Someone in the Radio 4 discussion, explained – almost word-for-word – something I wrote in one of my earliest (July 2013) BMJ rapid responses:
‘The mechanism should be, that the clinicians describe the clinical outcomes with and without any offered treatments to ‘everyone who could validly have an opinion (the family and friends) about what the patient would say, if the patient could answer for himself’: then, all of the ‘family and friends’ individually answer. The question put to family and friends is ‘What would the patient want to happen’ – it is not ‘What do you want to happen’.’
However that is extracted from a longer description of best-interests decision-making - and while clinicians write that part, they do NOT write the rest of it:
‘If there is not an attorney – and it is unusual for there to be an attorney – the Act does not define who can be a decision maker, it merely requires anyone who makes a best interests decision, to be able to have legitimately made it (section 4(9)). So, instead of assuming ‘the doctor is the decision maker’, let us simply assume ‘there is a decision to be made’ and look at the mechanism. The mechanism should be, that the clinicians describe the clinical outcomes with and without any offered treatments to ‘everyone who could validly have an opinion (the family and friends) about what the patient would say, if the patient could answer for himself’: then, all of the ‘family and friends’ individually answer. The question put to family and friends is ‘What would the patient want to happen’ – it is not ‘What do you want to happen’. If they all say ‘Fred would accept the treatment’, or they all say ‘Fred would refuse the treatment’, it seems simple – in such a unanimous situation, behave as if the (incapable) patient has answered directly, record who was involved in the discussions and who said what, record the best interests decision which emerged, but do not claim who ‘made the decision’.’
Clinicians and Social workers, seem to believe various things which I cannot find in the MCA itself: that there is always a defined decision-maker pre-decision; that family carers cannot make best-interests decisions about medical interventions; that somehow the MCA’s Code of Practice is relevant in a disagreement with a normal relative about the meaning of the MCA; and others, some of which are too ‘nerdy’ for this piece.
Clinicians tend to write things such as ‘the MCA tells us that we should be allowing a mentally-incapable person as much freedom as is possible, while keeping the person safe’. But it doesn’t – you can’t actually find ‘… while keeping the person safe’ in section 4’s description of best interests.
The only part of section 4, which seems to ‘explain’ best-interests, is section 4(6); and it looks very close to a description of what is legally termed ‘substituted judgement’. Section 4(6) tells you to try and work out, as mentioned above, ‘what the patient ‘would have decided’ in this situation [if somehow the patient could decide]. If the answer to that question, is the decision which should be followed by the decision-maker, then we have ‘substituted judgement’.
So, I can describe Substituted Judgement.
But Best Interests is NOT substituted judgement – and, it is beyond my ability, to describe what best interests is. The best that I can come up with, is;
‘Best Interests is Substituted Judgement with added caveats – and those caveats are impossible to describe simply and clearly’
This complexity and ‘lack of clarity’ is probably inevitable, if you do not use the simpler substituted judgement – there are things which clearly are foundational to best interests, such as:
The individuality of the person/patient is fundamental in best-interests decision-making, and the decision-making should in principle be independent of the decision-maker;
Best Interests clearly ‘stands above’, as a legal justification for decision-making, ‘the principle of necessity’: the recent ‘ReSPECT’ approach has de facto accepted that, but ReSPECT refuses to admit that a family carer who calls 999 might be able to defensibly satisfy section 4(9) of the MCA, whereas a 999 Paramedic who attends ‘in an emergency’ almost certainly could not claim to have satisfied 4(9);
One thing which is very obvious, is that the MCA was not designed ‘to make the working lives of clinicians easier’. In fact, if you adopt ‘we should just be applying the MCA as it is written’ approach, then that makes the working lives of clinicians VERY DIFFICULT INDEED. It seems clear to me, that because of that, professionals cling to interpretations of the MCA which do not match the rulings of judges, and which are ‘perspective-biased’ if the disagreement is between patients, family carers and clinicians ‘about what the MCA says’.
If this seems a little less clear than some of my other pieces – assertions without any ‘proof’ - then there is a reason: as I said, it in addition to an e-mail, and I am assuming that the two people I’ve e-mailed will be able to ‘see where I’m coming from’ without those missing proofs.
I suppose, it might help to finish with an analogy. The MCA’s best interests, is not a description of a formula: it isn’t even close to being ‘a formula for reaching the decision’. If you were trying to design an aircraft, you would need an understanding of aerodynamics in order to design an aircraft which should fly well. What the MCA tells us, is effectively what you need to plug into the formula: the shape and surface area of the wings, the trust of the engines, the rigidity or flexibility of the aircraft’s surfaces, etc – but the MCA does NOT give us the formula, into which we fit those variables.
So, it is just as well that any best-interests decision-maker is only required to satisfy this:
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.
‘… AND WATER IS WET, AS WELL!’
A Twitter conversation, on one of my old ‘favourites’, cropped up yesterday: does the MCA’s requirement that a valid ADRT refusing a life-sustaining treatment must be in writing, mean that a verbal refusal of a life-sustaining treatment cannot be legally binding?
The answer is clearly ‘no, it doesn’t mean that’ - I find that most of the rest of the world say ‘yes, it does mean that’, and to be frank ‘it almost makes my brain hurt’ that I need to keep arguing about this one.
I’ll have yet another go – using a ‘general point about the MCA’, and then using 3 ‘collapsed into a cardiopulmonary arrest scenarios’.
GENERAL POINT
The MCA, is clearly about strengthening patient control: about increasing patient autonomy. It would surely be contrary, to introduce legally-binding written ADRTs and to introduce ‘this now means that your expressed refusals are not legally binding on the people you tell, until you also write them down and get them witnessed’. That would be ‘absurd and bonkers’ so such an interpretation, simply must be ‘missing something’.
Here goes – yet another way of arguing this, to add to my earlier versions.
SCENARIO 1
You are a 999 paramedic. You arrive at a house, there is a man lying on the floor next to a table. He is holding in his hand what seems to be a valid written and witnessed advance decision (ADRT), refusing CPR, and he is in arrest. The woman who lives next door is in the house, and she explains to you that he had fallen the week before, she had minutes ago heard a thudding noise so came round to his house, and found him on the floor, so she called 999.
You might be pondering ‘why is he holding his ADRT’. You might think ‘was he about to write ‘I retract this decision’ across the written ADRT because he had changed his mind – is that why he was at the table, with his ADRT?’. Or you might think ‘did he feel unwell, and was he reading his written ADRT because he somehow felt he was going to arrest, and he wanted to check that if he arrested with the ADRT next to him, its wording would prevent a 999 paramedic such as myself from attempting CPR?’
You COULD NOT ANSWER THOSE QUESTIONS. There is no possible way, for you to know the answers.
SCENARIO 2
You are a GP visiting a patient, about his bad knee. At the end of this visit, he asks you about his ADRT refusing CPR, which you already knew about, because he consulted you when he created it 2 years ago. He gets out his written ADRT, puts it down on a table, and questions you about its wording, because he is not convinced that it will definitely prevent attempted CPR. You tell him that the wording on the ADRT should prevent 999 staff, or A&E staff, from attempting CPR. You (GP) are walking to the front door to leave when you hear a thud, and you turn round to discover that he has collapsed and arrested, and he is on the floor next to a table with the ADRT in his hand.
SCENARIO 3
You are a GP visiting a patient, because he is going to write a written ADRT refusing CPR, and he wants to consult you about its wording. You have spent 20 minutes discussing what he should write in the ‘instruction section’ of his written ADRT, you have both agreed about what it is best for him to write in that section to convey his instruction, and OF COURSE YOU UNDERSTAND HIS REFUSAL BECAUSE YOU HAVE BEEN DISCUSSING IT WITH HIM. The patient has just picked up his pen, to complete his ADRT. But before he writes anything, while he is making a final check of what is already written on this ADRT-in-preparation, he suffers a sudden cardiopulmonary arrest, and falls to the floor next to the table, with the paper in his hand.
Three situations, but there is no ‘reasonable doubt about the patient’s instruction’ in 2 and 3, despite there being a valid ADRT in 2 but not in 3. By contrast, there is much more ‘uncertainty’ in 1 than in 2, despite there being a valid ADRT in each.
The only logical way, to make sense of this, is to assume that the thrust of the MCA – its shift away from ‘paternalism’ towards ‘patient self-determination’ - means that the ADRT must be written, precisely because the paramedic might ponder those questions, with no possible way of answering them: which means that the paramedic should withhold CPR if the ADRT is prima facie valid, and if it is apparently applicable. If the risk of a written ADRT refusing CPR being followed, has not been transferred to the ADRT’s author when the ADRT was created, then the ADRT is pointless! 'I was told verbally by the patient 3 months ago that he was refusing - but I have not seen him since then' is the reason the refusal of a life-sustaining treatment AS AN ADRT must be written: you cannot know, whether he has changed his mind. But it says ADVANCE decision - if you are in ongoing contact with a patient, and he verbally expresses a refusal to you, you know he has not retracted it if he has not told you that he has changed his mind. Perhaps we need a new term about these refusals: an ADVANCE decision to refuse life-sustaining treatment must be in writing, but a verbal 'PSEUDO-CONTEMPORANEOUS' decision to refuse life-sustaining treatment is also legally binding.
But it is BLINDINGLY OBVIOUS that in both 2 and 3 the understanding of the GP, that his patient has INSTRUCTED HIM TO NOT ATTEMPT CPR, is identical.
Advance Decisions are INSTRUCTIONS – if you have no doubt about the instruction, then as Mr Justice MacDonald explained:
‘C has capacity to decide whether or not to accept treatment [so] C is entitled to make her own decision ... As a capacitous individual C is, in respect of her own body and mind, sovereign.'