Policy review: NICE Guidance on Decision-making and mental capacity

The guidance referred to is available here.

I decided to branch out from books and papers and look at some NICE guidance and maybe some policy documents too in weeks to come. I present this as very much a ‘non-expert’ but rather as someone working in this area who wants to make sure I am aware of best practice.

NICE and the place of NICE in Social Care

As a brief introduction, it is useful to note the role of NICE. The National Institute for Health and Care Excellence (NICE) was founded in 1999 as an independent body which produces advice and guidance about best practice in medicine and health. After the 2012 Health and Social Care Act, the body was asked to provide guidance on social care and the first social care guidance was issued in 2014. It is a non-departmental government body.

Background to this guidance

The guidance on Decision-making and mental capacity was published in October 2018 as NG108 . As part of the process of writing guidance, NICE committees will involve experts (including experts-by-experience). Alongside the guidance itself, NICE publish the methodology which is useful as a new researcher to understand how to write up scoping literature reviews as well a methodology although it is in a lot more depth that would usually be necessary. It includes which databases were used for searches and what phrases and words were used, which studies were included and which were excluded. They also detail the expert testimony included and who was consulted and inputted into the formation of the document.

Context

The guidance was written in the light of numerous reports and studies (which are detailed in full on the NICE website) which pointed to a mismatch between what the legislation and Code of Practice say about assessing capacity and making decisions about capacity on behalf of people when they may lack capacity to make those decisions in the context of health and social care. Of course, the Mental Capacity Act (MCA) and its scope move far beyond the health and social care sphere but for the purposes of NICE, that is where their scope lies. The guidance was actively commissioned by the Department of Health to help people using the Act in practice to engage with it.

The guidance is used alongside the primary legislation, Code of Practice and growing case law and provides practical assistance both to both health and social care professionals and organisations that employ them and those who commission these services regarding duties, expectations and best practice goals.

As the Code of Practice is being updated now, until it emerges, this is the most recent guidance that practitioners can turn to. Personally, I have found it enormously useful in my work, not least making me more aware of expectations. I know colleagues who have been more critical but for me, it’s been a useful tool.

The guidance specifically excludes reference to deprivation of liberty safeguards and areas of decision-making and mental capacity for under 16s which have different legislative frameworks.

Summary of key recommendations

The guidance divides along the lines of key recommendations and divides them into recommendations for individual practitioners, for service provides and for commissioners. So reading this, one can choose the parts that relate most to the area that impacts.

Regarding individual practitioners, as that is where my interest lie, I was disappointed that some of the key ‘know the law and apply the principles’ has to be stated. It shouldn’t need to be part of formal guidance. Some of the guidance is stuff that shouldn’t even need to be said but perhaps reflects where some of the drive has come. Areas like, ‘make sure you document past and present wishes, beliefs and preferences’ may seem like they don’t need to be said but by expressing, them it ensures expectations are clear. When we are writing records, we are not just writing for tomorrow, but also for 10 years in the future.

The guidance also emphasises the importance of sharing information including information about accessing advocacy services. Obviously I won’t list all the recommendations here as a lot of them are ‘do what the Code of Practice’ says but there is a stronger emphasis on recording reasons for decisions and involvement.

The other area that I saw was strongly emphasised was the importance of advance care planning. By nature a lot of work in a busy organisation happens when it needs to and perhaps this is more focussed on social care staff who may be working in a more preventative capacity to think about and document advance care planning and give people the opportunities to understand and make advance decisions.

When explaining the process of actually undertaking an assessment of capacity, the guidance emphasises the need for collaborative approaches to be taken and refers to particularly difficult situations where someone may have a brain injury which affects executive functioning which may call for a more structured assessment.

The guidance is clear that a documented assessment of capacity must exist before a best interests decision is made. Some research has reflected that this has not always been consistent in practice. There is also a specific section of the guidance devoted to involving family members and those who are involved when best interests’ decisions need to be made. Although this might be obvious for people using the Act and Code of Practice, it strengthened the clarity of challenge when these steps are not taken.

To organisations that provide services and employ health and social care staff, there are specific guidelines which are highlighted. These include ensuring that staff have access to better training (they talk about more investment in training). They should also ensure there are robust monitoring procedures in place including outcome measures which involve people who have been assessed and the level of collaboration in decisions being made.

They are also tasked to ensure that the systems they have in place have a clear way of recording preferences and advance care planning including advance decisions.

Commissioners have recommendations which vary in strength from asking them to ‘consider’ increasing the scope of Independent Mental Capacity Advocates (IMCAs).

There are some areas of oversight that are emphasised and recommendations about systems being in place to ensure good practice is followed but there has to be a will to change in order to do this and that is probably not the priority of some who commission services.

Thoughts on the recommendations

Generally, I’ve found the NICE guidance helpful. Although I hope it doesn’t tell people using it anything new, it is a clear representation of some of the ‘how’ in terms of carrying out a mental capacity assessment and taking best interests decisions.

Recommendations, like all NICE guidance, are just recommendations in the end. The call on commissioners and service providers to provide more investment in training is something that requires analysis of the training which has taken place and why it hasn’t been useful. I have my own theories but this probably isn’t the place for them.

Given what the scope of the project, I think the recommendations remain unambitious. Yes, we should involve people but investing in training needs outcomes of training to be measured. Having key people in place to push mental capacity as a necessary knowledge set is key and shouldn’t rely on champions who have been picked because no-one volunteers. For me, work around capacity and best interests is a fascinating area of power dynamics, control and push between state and individual which needs to be explored in more depth and given more life in practice. If it is presented and trained through online tick boxes as if it’s just another burden to complete rather than a way to work with an individual and their family or people important to them in a collaborative and exciting way, it can influence attitudes to the processes.

But that’s probably outside the scope of the guidance!

Use in practice

I have found this to be eminently useful in practice, from the clear examples given about how to involve people in decision-making to the retelling of the legislation with recommendations about how they can be used better. Some of the recommendations can be completed by individual practitioners today, others need financing and systems to be changed but anyone who is involved in assessing capacity or working with patients and service users to build pictures of individuals through care planning and incorporating advance care planning can find the guidance immediately useful.

Conclusion

I have probably not explored relevant NICE guidance as much as I should have and this is the first guidance I have seen which directly influences my day to day practice. It has been useful to read through and I have a copy on my desk at work which I direct people to. One of the key uses for NICE guidance, particularly when there are recommendations for organisations, is to highlight through management when they are not being adhered to (I’m terribly popular with my managers!).

However, even for the key steps of assessing capacity, there is useful, clearly written and up to date guidance and for that, this is worth both accessing and using actively.

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