Progress towards improved decision-making during end-of-life care: or, rather, the lack of progress!
Towards the end of 2017, one of my contacts, in an e-mail when we were both ‘bemoaning’ the snail’s pace progress towards better understanding and implementation of the MCA, wrote:
‘I want everyone in the country to know all about what powers and responsibilities the MCA gives them: my analogy is that in Northern Ireland every citizen knows exactly how many hours you can be held without charge where possible terrorism is suspected; that’s because it interests all of them and could apply to any of them. Surely the same is true of the MCA. But I’m not currently holding my breath. 10 years in, and we’ve not got very far at all.’
More recently, another of my contacts wrote in an e-mail:
‘On some people’s view, the whole point of the MCA was actually to enable family carers to make everyday decisions on behalf of relatives; that’s clear from the Law Commission’s work in the 1990s. Of course in practice what it did is actually consolidate the power of clinicians, by making clear that families weren’t ‘the decision maker’ if someone lost capacity, but technically speaking it just codified the common law defence of necessity into s5 MCA.’
Now, there are differences of opinion about both what the MCA actually says and means, and also about what we should be telling patients and relatives. My personal opinion, which I’m confident is shared by the first of my contacts above, amounts to ‘the MCA itself is pretty-much fine – but the professionals persist in misrepresenting the Act’. I’m less clear about the position of my second correspondent – it seems to imply that the Act somehow did not do what it was intended to do: I strongly disagree with that. The problem, is that the Act very clearly ‘says one thing, but doctors, etc, keep claiming it says something different’.
There is also disagreement, in the context of ‘the MCA says ‘X’ but the clinicians and other professionals [incorrectly] insist it says ‘Y’’, about what we should be telling patients and relatives. One position, the one I employ the most often, is ‘we need to keep making it clear to the professionals, where their descriptions of the law are wrong’. Another position is ‘we need to explain to patients and relatives how to optimise their chances of ‘asserting the ‘rights/etc’ which the MCA describes’ taking into account that the professionals are getting the law wrong’. Both positions have merit: if we explain the law correctly, but professionals apply the law incorrectly, that will be problematic in terms of patients and relatives achieving the rights described in the MCA: whereas if we ‘go along with the flawed beliefs which are held by professionals’, patients and relatives probably stand more chance of asserting their rights, but it reinforces bad professional behaviour.
It is clear, that this distortion of the MCA does take place. It can be illustrated, by what various people have written about the decision-making authority of Welfare Attorneys. The MCA is itself very clear about that, in its sections 6(6) and 6(7), but the MCA’s Code of Practice correctly describes the situation in its section 7.29:
‘If healthcare staff disagree with the attorney's assessment of best interests, they should discuss the case with other medical experts and/or get a formal second opinion. Then they should discuss the matter further with the attorney. If they cannot settle the disagreement, they can apply to the Court of Protection (see paragraphs 7.45-7.49 below). While the court is coming to a decision, healthcare staff can give life-sustaining treatment to prolong the donor's life or stop their condition getting worse.’
When a BMJ paper ‘promoting ‘ReSPECT’’ was published, I took issue with something its authors had written, and a lawyer who had advised ReSPECT used some wording which is ‘weaker than’ the above wording in the Code – the lawyer wrote:
‘… the views of a proxy decision-maker as to what are in the patient's best interests should, in general, be taken as determinative on this point. The proxy decision-maker would, in other words, stand in the shoes of the patient as regards the formulation of the recommendations. However, there is an exception to this if it is sufficiently clear that that the views that the proxy decision-maker are advancing are not in the best interests of the patient. There is an argument that a decision that a proxy seeks to make which is starkly contrary to any reasonable formulation of the best interests of the patient cannot be said to be a relevant decision for purposes of s.6(6).’
Put simply, the MCA and its Code of Practice state that the Welfare Attorney decides, and to challenge the attorney’s decision healthcare staff must be applying to a court for a ruling – and the lawyer weakens that by suggesting that the attorney’s decision need not be followed if is appears to be ‘starkly contrary to any reasonable formulation of the best interests of the patient’.
The BMA/RCN/RC(UK) wrote in its CPR Guidance, something ‘weaker than’ what the lawyer wrote:
‘'If the welfare attorney makes that decision, it is a binding decision that clinicians must respect, unless ... the clinician has good reason to believe that the decision made by the welfare attorney was not made on the basis of the patient's best interests'.
And in the paper promoting ReSPECT, the authors used this wording:
‘that person's (the welfare attorney’s) decisions must be viewed as binding, as long as they clearly serve the patient's best interests.'
You will find the appropriate URLs in my piece at:
But we started with a law which says that clinicians must follow the welfare attorney’s decisions unless the clinicians are applying for a court ruling, through a lawyer who introduces the ‘starkly contrary to any reasonable formulation’ argument, via the BMA/RCN/RC(UK)’s ‘unless ... the clinician has good reason to believe that the decision made by the welfare attorney was not made on the basis of the patient's best interests’ to the ReSPECT paper VERY DIFFERENT ‘(the welfare attorney’s) decisions must be viewed as binding, as long as they clearly serve the patient's best interests.'
This is TYPICAL of the clear ‘drift’ between what the MCA actually says, and the way that by the time you get to ‘operational guidance’ what you read, is VERY DIFFERENT. And – that simply isn’t good enough!
Another serious problem is that professionals have all manner of other things ‘thrust at them’, and those things often conflict with the Mental Capacity Act: ‘safeguarding’ is an obvious one, and a GP expressed it well in an e-mail to me in 2014:
‘I recently had MCA training and it was made clear that the hope of the act was that it would be empowering of the patient and perhaps the development of the IMCA role demonstrates that aspiration.
We also have the whole 'safeguarding' agenda pushing in the opposite direction.’
As one of my correspondents said late last year:
‘10 years in, and we’ve not got very far at all’