Surely you can see that is a red car not a yellow car !
I opened an e-mail newsletter recently, and it had a link to a piece about the Mental Capacity Act, written by Rachel Griffiths:
I should declare something here: I sometimes swap e-mails with Rachel.
Rachel starts her piece by saying that the MCA is very important for people who have dementia - true, but it can get very complicated indeed, if you try to apply the MCA to 'dementia'. But, inside her article, Rachel says this, and it is this which I would like to discuss:
'There's a real risk that lots of professionals will argue merrily among themselves (as I fear we sometimes do) about the finer details of the law around mental capacity and lose sight of what's happening in the lives of the people the laws are there to empower and protect.'
Now, Rachel is very aware, of my position on 'professionals arguing merrily among themselves', or 'bereaved relatives talking to each other', or '999 paramedics talking to each other': things will not be resolved, until everyone is talking to everyone else.
Rachel goes on to write:
'And the best way to ensure that decisions are made within the MCA's 'golden thread' of respect for the people living with it is to get the basics right. This means often checking our thinking against the five Principles of the Act, and bending over backwards to learn what people want, see their unique perspectives on life, and make their personal frameworks of history, culture, preferences, and wishes central to any interventions we need to make in their lives.'
Rachel has mentioned 'the basics' and 'arguing over the fine details' but in my opinion the situation is MUCH WORSE: in my opinion, the professionals have got the 'broad brush strokes' of the Act, wrong.
I'll leave it to readers to decide if I'm right, but here are a few of the things where 'I see a red car' and it seems that the professionals 'see a yellow car'. I will not number them - I'll keep each 'difference' in a separate paragraph. And although I've written about these things, I'm not going to include references here.
Professionals usually claim that section 3(1) of the MCA 'explains how mental capacity can be assessed'. I claim that section 3(1) is a description of how a consultation with a mentally-capable patient proceeds - it is a clear description of Informed Consent. It does not in fact describe how you can ASSESS capacity - it describes how capacity 'works'. This difference, turns out to be 'trickier to deal with' than might be foreseen.
Doctors often suggest that section 3(1)(c) - 'to use or weigh that information as part of the process of making the decision' - implies that a doctor or other person, is allowed to ask a capacitous patient 'how did you make the decision': I don't agree - surely 'my thinking' is a private matter, and if I decide to only reveal the decision I've made, that is entirely up to me.
This autonomy of mentally-capable patients, and the fact that any challenge to capacity MUST NOT INVOLVE the patient's expressed decision, is very clear in the Act: by contrast, as soon as we move to section 4, it all becomes much less clear. The MCA is NOT 'clear about decision-making during mental incapacity' as many professionals imply.
There is a huge, and deeply problematic, conflict between sections 4(5) and 4(6) - clinicians do not draw attention to that, when they write about the MCA 'FOR A LAY READERSHIP': and when clinicians write about the MCA for clinical audiences, they are unable to RESOLVE that conflict (there is no way of 'clearly resolving' it - but the professionals could be honest, and they could ADMIT THAT when they 'explain the MCA to lay audiences').
Section 4(6) of the MCA, is the only guide inside the MCA (except for 4(5)) for best-interests decision-making:
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, you only consider section 4(6) if you are making a best-interests decision: and it involves 'understanding how the patient, when capable, used to think' (note: that is true if the patient went from mentally capable to something such as comatose - it is more complicated, if the patient's mental capacity has 'declined but not disappeared' such as with developing dementia). Most clinicians have worked out that section 4(6) can only be applied if you 'understand the patient as an individual' - that far, they are right. But as I've pointed out above, patients are not required to explain their individuality while they are mentally capable.
Clinicians seem to be developing a cottage industry at present, of 'trying to get capacitous patients to write down 'advance statements'' - this is apparently founded on 4(6)(a). I FUNDAMENTALLY DISAGREE with this approach - we should be encouraging patients to create written Advance Decisions (not these 'advance statements'). And if you need to apply 4(6), then the place to start is to rely on the expertise about the patient as an individual, which the patient's close family and close friends possess - that is why those people 'are close'.
Nothing in section 4 states that a family carer cannot make a defensible best-interests decision about the provision or withholding of a medical treatment - professionals disagree with me, but I cannot grasp why. It is very clear that 4(9) is the requirement: if you can satisfy 4(9) then your decision is one which is protected by the MCA, and if you cannot satisfy 4(9) you are not protected by the MCA (999 paramedics, and A&E clinicians, could hardly ever defensibly claim to have satisfied 4(9) - I'm sure that many clinicians have worked that out, but they HARDLY EVER ADMIT IT).
Section 4(7) is in fact 'a bit problematic [not clear enough] and also potentially confusing'. Professionals do not usually write about the issues thrown up by section 4(7), and it would take me too long to elaborate here.
The technical reason (the legal reason) for obeying section 4, is 5(2) - again, clinicians do not usually explain that.
This is 'tricky': but section 1(5) is 'somewhat misleading':
1(5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.
It isn't actually wrong - but there are parts of the Act (section 3, and sections 24-26) which enshrine in law the concept of Patient Autonomy/Informed Consent. And 'best interests' isn't a concept which applies outside of mental incapacity - many nurses seem to think that 'capacitous patients make decisions in their own best interests' but that isn't a helpful description: it should just be 'capacitous patients make their own decisions'.
The only part of the Act which gives legal POWER over best-interests decision-making is section 6(6) - there is NOT any section 6(6)(c): but for some reason, most clinicians think there is a section 6(6)(c) which says 'the senior clinician'. There is no such legal authority given to 'the senior clinician' by the MCA - and section 42 does something both rather different, and also VERY COMPLICATED.
I now come to something I see as absolutely crucial, to the correct understanding of best-interests. Professionals seem to believe that they 'are the experts' for best-interests decision-making'. This MAKES NO SENSE. Doctors also endlessly 'argue about ethics' and many people point at things [such as court rulings] which pre-dated the MCA in connection with best interests: this also MAKES NO SENSE. The logic is simple: a person (the patient) can chose another person, who can be a layman, to be appointed as a Welfare Attorney. The attorney acquires powers to control best-interests decision-making on appointment, but an attorney is NOT trained in law or medicine before or after the appointment: it follows that a normal layman who reads JUST THE ACT, and reads and 'has regard to' the Code of Practice, MUST BE ABLE TO 'UNDERSTAND' best-interests decision-making as a concept. So, the professionals are NOT 'the experts' when we are discussing MCA best-interests decision-making - either 'we are all experts', or 'the lay understanding of best-interests is the better understanding' (that would follow, if everyone appointed a welfare attorney, and most of those attorneys were laymen: if most of the decision-makers were laymen, and as a group lay decision-makers decided differently from professional decision-makers, if there is a concept of 'the best decision' then surely it would logically be the one the lay decision-makers arrived at).
Sections 20(4) and 20(5) of the Act, place the authority of Court Deputies beneath the authority of Welfare Attorneys - and, 20(5) forbids the court from giving a deputy the power over life-sustaining treatment which a patient can give to an attorney. This is an example - not often pointed at - of the patient self-determination which the MCA is founded upon.
Section 25(6)(a) of the Act, requires that an Advance Decision which refuses a life-sustaining treatment must be in writing to be valid. Many clinicians seem to believe that means a verbal refusal of a life-sustaining treatment, and in particular of CPR, 'is not legally binding'. THOSE CLINICIANS ARE WRONG - they are misunderstanding the reason why an ADRT refusing CPR would need to be written. The reason has to be - because 'otherwise it becomes logically ludicrous' - that a written ADRT which is only first discovered AFTER THE PATIENT HAS LOST CAPACITY is legally binding. To believe that a face-to-face verbal refusal of CPR, made after a discussion about CPR, and if the patient then arrests before the clinician has left the patient's presence, 'is not legally binding', is, to be frank, 'AN ABSURDITY'.
There is also an issue with 'patient confidentiality' clashing with section 4(6): complicated to explain, but again I differ from clinicians about this conflict.
There is 'a beautiful way' of approaching best-interests decision-making, in my opinion, which simply has to be 'the best solution IF IT WORKS OUT'. But it rests on something counter to embedded professional beliefs. I claim that unless 6(6) empowers a person, there is NOT any person with genuine powers over best-interests decision-making (section 42 is irrelevant if there are laymen involved, and section 42 is not similar to 6(6)). If you then ASSUME that 'we cannot define a decision-maker' and you simply inform and ask EVERYONE who is equipped to consider section 4 [and I also think - again, not so far accepted by clinicians - that family and friends are the people best-equipped to consider section 4] 'what would your best-interests decision be ?', then IF EVERYONE GIVES THE SAME ANSWER adopt that decision BUT DO NOT CLAIM THAT THERE WAS ANY INDIVIDUAL BEST-INTERESTS DECISION-MAKER.
I cannot see where section 4 suggests that a best-interests decision can be 'made in advance of when it is needed': I think section 4 'imposes a duty on an ongoing carer, to become sufficiently familiar with the situation, so as to defensibly make a best-interests decision when a decision becomes necessary'. Hardly any clinicians, are sufficiently involved with patients to satisfy that - family carers probably could achieve that level of familiarity, some district nurses might, 999 paramedics could not'. CLINICIANS ARE UNHAPPY WITH THE LOGIC OF THIS.
While a patient is still mentally-capable, the implication of the Act is that the way to achieve the Patient Autonomy and Informed Consent so fundamental to the Act IS TO LISTEN TO THE PATIENT - and in particular TO LISTEN TO THE PATIENT'S CLEARLY-EXPRESSED DECISIONS. If the patient is at home, usually only 'family carers' are PHYSICALLY PRESENT AND THEREFORE ABLE TO LISTEN: professionals are not reconciled to that, either.
CONCLUSION: these are not 'fine differences' - the way I see the MCA is fundamentally different from the way most professionals see the MCA: although many recent court rulings suggest that contemporary judges 'see the Act the way that I see it'. Doctors are increasingly noticing that judges are now seeing the MCA differently from the way the medical profession has traditionally thought about 'best interests'. In a recent BMJ paper, Dr Chris Danbury wrote something which you would simply not have come across a few years ago - he wrote in his paper that the COP 'increasingly prefers the relatives' view of best interests to those of the medical profession'. Traditionally, doctors would claim that relatives DO NOT HAVE VIEWS ABOUT BEST INTERESTS - 'traditionally' clinical authors have claimed that 'the relatives contribute information which the best-interests decision-maker then considers'.
I might expand this piece, and include links to other pieces: if I do that, it will be my intention to save the modified piece as a PDF and to upload it to the Dignity in Action Facebook page.
Rachel's piece (link above at the start) also includes these:
'bending over backwards to learn what people want, see their unique perspectives on life, and make their personal frameworks of history, culture, preferences, and wishes central to any interventions we need to make in their lives.
The judges keep reminding us of the importance of the individual's wishes in best interests decision-making. We are all still learning, I think, how best to work within the empowering ethos of the MCA, rather than fall victim to the risk-aversion and paternalism identified by the House of Lords MCA committee in 2014.'
I recently explained on BMJ why I bang on about the need to apply the law above 'medical ethics', in my piece at:
http://www.bmj.com/content/353/bmj.i2230/rr-7
Inside my piece you can find:
'And the ethics which many professionals seem to apply during end-of-life, offend me. I am offended that most guidance seems to imply that if a terminal patient has clearly expressed a refusal of a future treatment to a member of his family, 'somehow this counts less than if he had expressed it to a GP'. I am offended that even if I write a very clearly worded Advance Decision refusing cardiopulmonary resuscitation irrespective of why I arrest, if I arrest at home and the death could not be certified, attending 999 paramedics would be likely to ignore my instruction and would probably attempt CPR.
...
When EoL patients are at home, and capacity has been lost, discussions about 'what should happen' can lead to disputes, for example between a GP and a family carer. The only thing I am 100% certain of, is that a family carer's 'well, I'm not going to do that, because my dad made it perfectly clear to me he would have refused [that course of action]', is legally (and in my opinion morally) correct. It has to be legally correct: because it follows the fundamental 'a person is sovereign over his or her own body' legal principle.'
I'm deeply angry that clinicians write 'holistic' things about the patient's care (medical, spiritual, etc) but that they DON'T write about the need for a 'holistic' approach to patient support (professionals write reams about the need for integrated 'multi-disciplinary professional teams' supporting patients, but they do not write about the need to integrate the support being provided by family carers and professionals: 'a holistic support team' would involve family carers trusting in the clinical expertise of clinicians, and clinicians trusting in the honesty and integrity of family carers).