MCA and EoL: Conundrums, Paradoxes and Conclusions

CONUNDRUM 1: 11(7)(c) is problematic

See also

http://www.bmj.com/content/355/bmj.i6829/rr-0

http://www.bmj.com/content/352/bmj.i222/rr-0

You can find 11(7)(c) in the first rapid response - it says that a Welfare Attorney's authority 'extends to giving or refusing consent to the carrying out or continuation of a treatment by a person providing health care for P'.

This is TERRIBLE WORDING - and it simply isn't 'conceptually helpful'.

It is clear from sections 4, 5 and 6 of the MCA, that the role of a welfare attorney is correctly described like this:

'After being made aware of the clinical treatments on offer and of their likely outcomes, the attorney makes and expresses a decision as to whether the application of one-or-more of the offered treatments is in the patient's best-interests'

This isn't 'consenting to' - it is being aware that the offered treatment is a possible option, and then making a decision with that knowledge to hand. There is a subtle - but conceptually significant - difference between:

'We think we should operate on your dad - do you agree with us' and 'We could operate on your dad - should we operate or not'

and the question being put to a welfare attorney is the second one. The attorney 'decides what should happen' - that is why welfare attorneys exist.

Even the term 'informed consent' during capacity is best thought of in a different way - as 'an adequately-informed patient deciding whether or not to accept an offered treatment'.

If we think in 'everyday terms' about 'consent', then we will be thinking in terms of 'agreeing to'. Now, there are definitely some situations in which a clinician will be required to make a best-interests decision which involves the clinician treating the patient: the idea that this clinician 'consents to his own decision' is an absurdity, so we should not use the word 'consent' in connection with best-interests decision-making.

What the welfare attorney, the clinician, and anybody else who makes any sort of best-interests decision is required to do is:

TO DEFENSIBLY CLAIM COMPLIANCE WITH SECTION 4(9)

It logically follows - 'conclusion' - that anybody can in principle make any type of best-interests decision provided the person making the decision is adequately informed (you cannot necessarily act on your decision - section 6(6) might stop you, or you might be expressing your best-interests decision during a court ruling).

It is certainly true, that unless my 'compliance with 4(9)' rule is wrong - and I cannot see how it can be wrong - it must logically follow that normal family-carers CAN 'make best-interests decisions about medical treatments' provided they are adequately-informed: that conclusion is not widely accepted by professionals.

My second conundrum, follows from the conclusion of this one.

CONUNDRUM 2: it isn't really about care or treatment - it is really about interventions

The MCA's 'best interests' requirement stands in during mental incapacity, for the 'consent obtained from a capacitous patient'.

Although I don't think the Act itself says this, there is a definite 'suggestion' within guidance beyond the Act, and within 'professional mindsets', that best-interests decisions about medical treatments somehow 'should be made by clinicians' - and, that normal relatives cannot make such decisions.

This is not true for various reasons, so far as I can see: the obvious one, being that the MCA appears to be based on the idea that mentally-capable people can forbid any intervention - if we always think in terms of interventions, that distinction between 'treatment' and 'care' disappears automatically.

I might be 100% certain, that my dad would always refuse a blood transfusion, whatever the situation. You might be pretty certain that in a particular situation, your dad would want a blood transfusion. If we are not clinicians, and we don't have the necessary blood and transfusion equipment, neither of us could actually give a blood transfusion to our dad.

The decision about whether the treatment should be given - in other words the MCA's best-interests decision - is NOT about whether the decision-maker could actually apply the treatment.

Now, consider end-of-life, when the patient Eric, is sharing a home with two family carers, Jane and Derek. Both Jane and Derek are sure that Eric would never want CPR to be attempted - he has told them. Jane has been taught CPR as first aid, and in theory could attempt CPR if Eric arrested: but she wouldn't attempt CPR, because Eric has told her not to. Derek couldn't attempt CPR, because he doesn't know how to - but, he knows Eric has forbidden it. This makes it clear that you cannot necessarily distinguish between 'clinicians' and 'family carers' - as I've said, it is all about 'interventions'.

Keeping this short, the conclusion is this:

1) think in terms of interventions being refused or accepted - do not think in terms of 'care OR treatment';

2) think in terms of the people 'supporting the patient' as either being sufficiently-informed to either follow the patient's expressed decision, or else to make an informed best-interests decision if a decision needs to be made - do not start by separating 'relatives and family carers' FROM 'clinicians and professionals', INSTEAD START BY ASKING 'does this person - clinician or lay person - UNDERSTAND ENOUGH'.

See also my piece at:

http://www.bmj.com/content/356/bmj.j1216/rr-4

And Caroline Mawer's piece in the same series at:

http://www.bmj.com/content/356/bmj.j1216/rr-5

CONUNDRUM 3: 'feeling and emotions present, but capacity absent'

I usually write about the problems posed when a patient at home, whose mental capacity has never been in any doubt, expresses a decision to a family carer such as 'I definitely do not want anyone to attempt CPR from now on', but the patient collapses into unconsciousness (or cardiopulmonary arrest) before anyone else has been told. In other words, I think the law seems clear in my situation - you should follow the patient's expressed decision - and the problems stem from 'what family carers know but 'the system' doesn't'.

If however we consider section 4, it is not at all clear how you apply section 4(6) to the situation of a patient who clearly lacks capacity, but who does express forceful views, preferences, like and dislikes, etc. So for advanced dementia and other similar situations, it is 'the law itself which is problematic' - you can have as many meetings, and spend as much time, as you like, and that situation is simply 'legally difficult' [and, I have no doubt, often 'very fraught indeed']

The paradox is inevitable: section 4(6) tells you that the patient cannot make the decision, but that whoever makes the decision must take into account the feelings and suchlike of the patient (obviously that has to be the case) - there is no real way of being clear about decision-making, within that framework. Judges increasingly seem to be moving towards 'think about it in terms of the life the patient is experiencing' nowadays, when older rulings placed much more stress on 'preservation of life'.

See also:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=907&forumID=45