The NICE guideline on decision-making and mental capacity: very good try but only two thirds of a banana

To some extent, those responsible for pulling together the NICE guideline (NG 108) on decision-making and mental capacity published on 3 October were in an impossible position.  They could not rewrite the Code of Practice, despite the fact that real life has caught up with and substantially overtaken the Code.   To do so would lead to inevitable problems as to which practitioners were required to follow, given that the Code is statutory, but NICE guidelines provide an important part of the regulatory framework for health bodies, in particular.  They were also caught between the need to provide recommendations for organisations and recommendations for individual practitioners: the demands of both are not the same.

The guideline  contains a useful summary of key points, and has some really important and helpful aspects, including, in particular, seeking to place support for decision-making in its context by including recommendations about both advance care planning and best interests decision-making.  Both of these latter aspects constitute important parts of the framework for the support of the exercise of legal capacity mandated by Article 12 CRPD, and it is very helpful that the guideline recognises this – although it is perhaps a telling irony that it does so without any reference to the CRPD at all, as far as I could see.

The guideline contains the helpful encapsulation of the Aintree approach to best interests that:

Carers and practitioners must, wherever possible, find out the person’s wishes and feelings in order to ensure any best interests decision made reflects those wishes and feelings unless it is not possible/appropriate to do so. Where the best interests decision ultimately made does not accord with the person’s wishes and feelings, the reasons for this should be clearly documented and an explanation given. The documentation of the assessment should also make clear what steps have been taken to ascertain the person’s wishes and feelings and where it has not been possible to do this;, the reasons for this should be explained.  (paragraph 1.5.13)

It also contains the very helpful reminder that:

Practitioners should be aware that a person may have decision-making capacity even if they are described as lacking ‘insight’ into their condition. Capacity and insight are 2 distinct concepts. If a practitioner believes a person’s insight/lack of insight is relevant to their assessment of the person’s capacity, they must clearly record what they mean by insight/lack of insight in this context and how they believe it affects/does not affect the person’s capacity (paragraph 1.4.24)

However, the guideline does not – perhaps because it could not – get into the really gritty difficulties that arise in relation to assessment of mental capacity.   It is all very well, for instance, saying that:

To lack capacity within the meaning of the Mental Capacity Act 2005, a person must be unable to make a decision because of an impairment or disturbance in the functioning of the mind or brain. That is, the impairment or disturbance must be the reason why the person is unable to make the decision, for the person to lack capacity within the meaning of the Mental Capacity Act 2005. The inability to make a decision must not be due to other factors, for example because of undue influence, coercion or pressure, or feeling overwhelmed by the suddenness and seriousness of a decision (paragraph 1.4)

That is a statement of the law.  It does not provide assistance to a practitioner who is faced with a case such as Ms G’s where a person with a mild impairment and is caught in a complex social situation (or a ‘spider’s web’ as Ms G described herself).   What are they to do?

The guideline is also silent on the ‘translation’ gap that is increasingly obvious as between the words of the MCA and realities on the ground.  What, for instance, do the words ‘use and weigh’ actually mean?  And do you need to ask different questions to assess whether a person is able to ‘understand’ information depending upon whether they have dementia, schizophrenia or learning disability (spoiler alert, the answer must be ‘yes.’).  In fairness, the authors recognise that a key area for further research is in relation to using mental capacity assessment tools to assess capacity.  They also do touch on the gritty stuff relation to one area, acquired brain injury, where they note that:

Practitioners should be aware that it may be more difficult to assess capacity in people with executive dysfunction– for example people with traumatic brain injury. Structured assessments of capacity for individuals in this group (for example, by way of interview) may therefore need to be supplemented by real world observation of the person’s functioning and decision-making ability in order to provide the assessor with a complete picture of an individual’s decision-making ability. In all cases, it is necessary for the legal test for capacity as set out in section2 and section3 of the Mental Capacity Act2005 to be applied.

However, the concept of ‘executive dysfunction’ is not one that appears in the MCA, nor has it been the subject of detailed judicial scrutiny.  Precisely how does it fit with the time-specific nature of capacity?   Is what is being said here that the person should be said currently (for instance) to be unable to use and weigh the information that they are unable to turn decisions into actions (in lay parlance, that they are unable to walk the walk even if they can talk the talk)?  For what it’s worth, I would suggest that this would be an entirely legitimate approach, but it would have been helpful had the guideline actually said this.

More broadly, the guideline is also silent as to how fluctuating capacity is to be approached (save by reference to the – obvious – desirability of seeking to undertake advance care planning).   The thorniness of this issues and the real practical difficulties it causes on the ground are exemplified in the CDM case, and the fact that – too late for the drafters to take into account – permission has been granted by the Court of Appeal in the case so that the approach can be considered.

I am acutely aware that the guideline reflects a lot of very hard work by many very committed people, and that the criticisms above might be said to be designed to show off the hobby-horses that I want to ride.  But to me, the guideline can only stand as a partial substitute for what is really needed:

(1)   An updated Code of Practice (which should, we understand, be a lot closer than it had been before given the introduction of the Mental Capacity Amendment Bill); and

(2)   Grainy, multi-disciplinary, guidance as to how, actually, to assess capacity in difficult cases (with, as a crucial pre-requisite, consideration as to what constitutes a satisfactory assessment of capacity).  By way of trailer, this is precisely what the MHJ project on contested capacity assessment is seeking to achieve.

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