Is 'Soft Paternalism' an arcane process?: or 'don't tell us its our decision, until you don't agree with our decision'!

Is 'Soft Paternalism' an arcane process?

I almost submitted this piece as a rapid response to a BMJ article, because Professor David Oliver and I had been arguing about 'soft paternalism' (he supports 'medical soft paternalism' but I claim that setting aside any issues around 'best outcomes', it is not possible to reconcile any type of 'paternalism' with the MCA's description of the autonomy of mentally-capable patients [all the MCA supports is 'the doctor clearly explaining the medical outcomes to the patient' - it describes 'supported decision-making' {NOT 'shared decision-making}]) in the series of responses at:

http://www.bmj.com/content/354/bmj.i5195/rapid-responses

In the event, I didn't send in this piece as a response to that article, mainly because David Oliver's original article was about frailty, and unacceptable words used to describe frail elderly patients. So I've decided to put it here: an alternative title for this piece, would be 'You cannot tell patients and relatives that patients make their own decisions, but then thwart that decision-making !'.

At a fundamental level, I think my objection to the 'soft paternalism' supported by Professor Oliver, can be expressed with reference to the Montgomery ruling's removal of 'Bolam' for 'consent'. But I need to start with what we patients and family carers are told 'the Mental
Capacity Act does':

1 the MCA allows mentally-capable patients to make their own decisions about whether to accept or refuse an offered clinical intervention

2 the MCA allows a patient while still capacitous, to control decision-making during future periods of mental incapacity by:
2a creating an instruction in the form of an Advance Decision, and/or
2b arranging for a person of the patient's choosing to be appointed as a Welfare Attorney under the LPA, and giving this attorney authority over 'best interests' decisions about
healthcare

3 explains how 'best-interests decision-making' must proceed, in order for a decision-maker to claim to have complied with the MCA.

Professionals develop their own 'codes of behaviour', which sometimes the law leaves alone (the law doesn't tell brain surgeons how to best perform operations) and sometimes doesn't (the law might get involved in 'codes applying to restraint of suspects' for example, if the 'codes' developed by the police seem unsatisfactory to people who are not police officers).

Family carers and welfare attorneys cannot be expected to understand these 'professional codes': those things are by definition only understandable by professionals - they are 'arcane' and 'exclusive'. Clearly neither a lay attorney, nor a lay family carer, can 'follow arcane principles'.

Lady Hale, in paragraph 115 of the 'Montgomery' ruling (ref 1), a ruling which in my view extended the Informed Consent the MCA describes as applying when patients are capacitous to Scottish law, wrote:

'In any event, once the argument departs from purely medical considerations and involves value judgments of this sort, it becomes clear, as Lord Kerr and Lord Reed conclude at para 85, that the Bolam test, of conduct supported by a responsible body of medical opinion, becomes quite inapposite.'

'Bolam' is, so far as I understand it, the concept that professionals are the best judges of whether their own behaviour reaches an acceptable standard: and 'Montgomery' has made it clear that this isn't the test when 'consent' is the issue. So whether a brain surgeon is competent when performing surgery still falls within the Bolam Test: but whether or not the surgery should take place, if it might be clinically successful, involves consent if the patient is capacitous, and is excluded from 'Bolam'.

It is clear that family carers are subject to the MCA, and it is equally clear that a family carer once appointed as an attorney under the LPA possesses authority over best-interests decision-making about the provision or withholding of offered medical interventions. But there is not any training associated with appointment as an attorney - an attorney acquires authority on appointment, but his or her understanding of clinical issues doesn't magically improve. As section 7.29 of the MCA's Code of Practice explains (ref 2) "Attorneys must always follow the Act's principles and make decisions in the donor's best interests'.

Whatever section 4 of the MCA - the guidance about 'best-interests decision-making' - is saying, section 4 is clearly about the replacement for consent from the patient, when the patient cannot consent himself. So I consider that this 'disregard of 'Bolam'' must apply, if 'best-interests decision-making' is the issue. If a professional seeks to introduce into best-interests decision-making any 'code or ethic' which can only be understood by the members of a particular profession, then in my opinion a family carer or a Welfare Attorney can claim 'your position isn't legitimate - you cannot introduce anything into best-interests decision-making, which it could be claimed a normal person cannot understand'.

Dr Oliver's 'soft paternalism', and 'professional duties of care', seem to me, to involve 'things a layman cannot be expected to properly understand' and therefore they look rather like 'a magic 'get out of jail free card'', which professionals resort to during arguments with laymen.

And it seems to me that sometimes 'coercion' is being used to describe 'persuasion but in a direction I personally do not agree with' (ref 3).

It follows from the above, that I believe normal laymen must be able to understand what the MCA is telling us about the meaning of 'best interests': and I am a layman who has probably thought about the MCA much more than most lay welfare attorneys will have done. My position, is that family carers involved in end-of-life at home situations when their loved-one is initially mentally-capable, for example when a parent is dying, are correctly complying with the MCA if they act to support the choices they honestly believe their loved-one would have made: family carers must follow the 'that isn't what my dad would have wanted you to do - so if you do it, then you are doing wrong, and I will oppose you' position.

So, for a situation when an elderly and terminally-diagnosed parent is at home, my position is clear: family carers must act to prevent interventions which they feel reasonably certain the parent would have refused, from taking place.

That does amount to 'it is my dad's choice - not anybody else's'.

But I readily admit, that if I were the father of a 20 years old daughter who was in danger of dying from anorexia, I doubt that my position would be as simple as 'it is her choice'.

Note that it isn't 'arcane' for clinicians to assert that they understand clinical options and prognoses better than family and friends: nor is it 'arcane' for family and friends to assert that they understand the choices the patient would have made in described clinical situations better than the clinicians. Those are simple logic.

I want clinicians and family and friends to be working together to improve end-of-life behaviour, and in particular to try and arrive at best-interests decisions together - and
introducing 'arcane justifications for why we understand things better than you can' is completely unhelpful !

Ref 1 neutral citation [2015] UKSC 11
https://www.supremecourt.uk/cases/uksc-2013-0136.html

Ref 2
https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice

Ref 3 http://www.bmj.com/content/351/bmj.h4437/rr-63

BMJ rapid responses are limited to 1000 words, but as DIC pieces are not, I can develop one of the 'themes' which the above leads to.

One, is that if mentally-capable patients are making their own decisions, 'the risk of the decision being followed must therefore rest with the patient'. This is something which needs to be accepted for written Advance Decisions - otherwise, if you anticipate a treatment which might be provided 'during an emergency' and you try to forbid the intervention by using a written Advance Decision, your ADRT simply doesn't work. This acceptance of 'the risk rests with the patient' is CRUCIAL for refusals of clinically-possible cardiopulmonary resuscitation (CPR) if you are in your own home - at the moment, you can in theory do that, but in reality you almost certainly can't.