Does the MCA promote Substituted Decision-Making or does it promote Supported Decision-Making ?

I was prompted to write this, because I came across the Law Commissions' consultation paper no 222 'Mental Capacity and Deprivation of Liberty A Consultation Paper'. As there is a possibility that the MCA and its Code of Practice will be changed, I am sending various bits and pieces to the consultation.

There is apparently a conflict between the MCA and some other developing law, which is summed up in section 3.20 of the consultation, which includes this definition:

Supported decision-making is a process of providing support to people whose decision-making ability is impaired to enable them to make their own decisions, whereas substituted decision-making involves someone making decisions on behalf of someone else on the basis of some objective standard such as best interests. If the Committee is correct, then the Mental Capacity Act clearly falls short: it provides for a substituted decision-making regime where decisions are made on behalf of the person in their best interests (for instance, by a court appointed deputy).

To start with, how would you apply supported decision-making to this decision: a patient is comatose after a car crash, and without intensive treatment will certainly die - with intensive treatment, there is a reasonable chance that the patient would survive, but there will inevitably be very serious permanent damage. For example, we know the patient has lost an arm, we think it likely the patient would be paralysed below the waist, and there might be some brain damage as well. The decision, is very clearly 'should we treat the patient, or should the patient be allowed to die ?'.

We cannot 'support the patient to tell us', because the patient is in a coma - and if we treat the patient to the stage where the patient is no longer comatose, the option of 'death by non-intervention' will have passed by. I shall call this 'the car crash coma scenario', and I will return to it later.

On the other hand, many patients with an illness such as dementia, will still show feelings, emotions, preferences and likes and dislikes - all that they lack, in terms of the MCA, is the ability to adequately understand the consequences of 'complex choices'.

POINT 1:
The MCA does tend towards 'supported decision-making' in this situation.

Section 1(3) of the Act, describing its principles, says:

1(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

The section of the Act which most reinforces this 'objective' is probably section 3(3):

3(3) The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.

However, the MCA does still adopt the position, that mental-incapacity does prevent a person from exercising the legal right to be self-determining, possessed by capacitous persons. The Act stresses that people are not necessarily incapacitous in 'a general way': rarely would someone be incapable, if the decision was 'what do you want for tea - the choice is fish or chicken' and the person expressed a preference.

But, the centre of the Act, (but arguably not the most important imperative of the Act: it could be argued that the strongest imperative of the MCA, is 'if capacity is anticipated, try to get the patient to make and express the necessary decisions in advance') is section 4, and 'the best-interests requirement'.

Guidance about the MCA, written by bodies such as the General Medical Council, tends to use the term 'legal proxy'.

LEGAL PROXY: this is a term describing a person who has been legally-empowered, to make the best-interests decisions - for the MCA, that is either a Welfare Attorney chosen by the patient, or a Court Deputy appointed by the Court.

I use in my writing, a different term involving the word proxy: a 'proxy mind'.

PROXY MIND: this is my term, to describe a person 'who knows the patient well enough, to have a legitimate opinion about how the incapable person would decide [if somehow capacitous]'.

For example, if the driver who is comatose in the car crash coma scenario were a soldier who had been serving in a war zone, and he and his comrades had seen many very serious injuries, and had talked together, it is possible that the soldiers who had served with the driver, might be able to say 'If he would be alive but as badly disabled as you are saying, then from what he did and said when we were in Iraq 6 months ago, I think he would almost certainly prefer to be dead'.
2
In the piece written by Mr Justice Hayden, which can be found at:

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

the judge explains in section 53 how the patient's friends, can use their 'life experience of the patient' to make exactly this type of 'judgement':

'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 explained my position on this, and also how 'disagreements are addressed' in some detail in my piece at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?forumID=45&obj=viewThread&threadID=741

More briefly, I explained how this interpretation of MCA best interests functions if all of the proxy minds agree, in a BMJ piece (I had cardiopulmonary resuscitation in mind, when I wrote the following - a Court Deputy can also possess decision-making authority for some decisions):

http://www.bmj.com/content/347/bmj.f4085/rr/654490

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'.

Most clinicians do not seem to like, the interpretation of MCA best interests which I present there: they think it is legally flawed, whereas I consider it to be legally correct, and clinicians think the MCA says they 'make the best interests decision' whereas I think the MCA 'requires that the quality of the best interests decision comes first'.

I would draw attention, to the difference between my 'proxy minds' (a proxy mind, in my analysis, is a person 'whose knowledge of the patient as a person, allows the proxy mind to validly form [but not impose on others] a best interests decision, if provided with the necessary clinical and other factors') and a 'legal proxy' (who can impose a decision).

In theory, I might choose to appoint as my welfare attorney, someone who I once knew quite well, but have 'drifted apart from'. Suppose that I formed an opinion, when 40 years ago we served in the army together, that a friend in the army 'was the most rational, solid and morally-on-compass person I have ever met'. This chap happens to move close to my home, when I become end-of-life - so I ask him if he will become my welfare attorney, not because he now knows me well (so he could not be one of the 'proxy minds') but because I trust him to control the best interests decision making.

QUESTION:
Is my proposal, or interpretation, of how section 4 best-interests decision-making should work, substituted decision-making, or is it closer to supported decision-making ? I am only allowing - if any can be found - people who 'can defensibly 'think like the patient thinks'' to actually 'make' best interests decisions.

Isn't that 'proxy supported decision-making' - because it requires a deep understanding of 'the patient's take on life' ?

By contrast, isn't genuine 'substituted decision-making' a process where you allow a person who doesn't 'deeply know the patient as a person' to make the decision, thereby risking 'that the decision-maker projects his own values into the decision' ?

The Consultation draws attention in section 12.35 to an opinion expressed by Lady Hale:

The purpose of the best interests test is to consider matters from the patient's point of view. That is not to say that his wishes must prevail, any more than those of a fully capable patient must prevail. We cannot always have what we want. Nor will it always be possible to ascertain what an incapable patient's wishes are. Even if it is possible to determine what his views were in the past, they might well have changed in the light of the stresses and strains of his current predicament. ... But insofar as it is possible to ascertain the patient's wishes and feelings, his beliefs and values or the things which were
important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being.31

The Consultation proposes this change to the MCA:

12.47 Provisional proposal 12-2: section 4 of the Mental Capacity Act should be amended to establish that decision-makers should begin with the assumption that the person's past and present wishes and feelings should be determinative of the best interests decision.

Isn't that, exactly what I have been arguing, is the logical interpretation of the MCA - isn't that the interpretation which 'already leaps out from the MCA's words' if you start from its attempts to place decision-making in the hands of a capable patient (assumption of capacity; legal authority of Advance decisions; ability to appoint a Welfare Attorney) ?

Anybody who has bothered to get this far - without becoming either totally confused or seriously bored - should take a look at my piece (and especially at the PDF file which can be downloaded) at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?forumID=45&obj=viewThread&threadID=741

CONTRIVED DECISION-MAKING

The recent Montgomery Ruling has made it clear that 'consent must be genuinely informed'. Expressed simply, society and the law will no longer accept the idea that 'Doctor Knows Best' and we now have 'Doctors Inform, Patients Decide'. The 'new' situation is called either Informed Consent, or 'Patient Self-Determination'.

The 'Doctor Knows Best' influence, can be summed up as 'Contrived Consent - where patients are only given selective information, which pushes the patient towards making the decision which the doctor would prefer the patient to make'.

With people who are 'less autonomous than is normal', there is a VERY OBVIOUS DANGER that 'supported decision-making' could actually be 'CONTRIVED supported decision-making': that instead of 'being supported to make the choice', people 'at the receiving end' of supported decision-making, are 'only supported to make the decision which suits somebody else'.

Like various political referendums, where 'The politicians repeatedly ask the public, until the public decide the way that suits the politicians'.

Closing Note: the next piece in my series of 'musings about the MCA and EoL' will be a piece about 'advance care planning', and that is also prompted in part by the DoLS Consultation (the other prompt, was my recent understanding that ACP is essentially a different concept when mental health clinicians use the term, compared to when I use the term).

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