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Published 12 December 2018
The interim version of this guidance - issued at the end of last year in the wake of a flurry of court cases about CANH - was limited to withdrawal of CANH from patients with prolonged disorders of consciousness (PDOC) - e.g. persistent vegetative state or minimally conscious state - following sudden-onset brain injury.
The new, final version of the guidance encompasses a much wider group of patients.
Decisions to start, re-start, continue or stop CANH for adults lacking capacity are all covered, with the focus on patients who could go on living for some time if CANH was provided (i.e. not those expected to die within hours or days) where CANH is the main life-sustaining treatment being provided.
This includes patients with:
Whilst much of the guidance is applicable across all these patients, there is also some category-specific guidance in relation to each of the above (e.g. the guidance specific to previously healthy PDOC patients emphasises the need for expert assessment in a designated PDOC assessment unit).
Running as a central thread throughout this guidance is the concept of making decisions about CANH in a proportionate way - i.e. the greater the uncertainty about the correct decision, the greater the degree of scrutiny needed. Key factors influencing this will be the person's prognosis (e.g. the potential for future recovery or deterioration and expected survival time) and the impact of making the 'wrong' decision about CANH (e.g. the impact of withdrawing it too soon or carrying it on for too long).
Another key concept underpinning the guidance is the importance of keeping in mind at all times that the decision is about what is in the best interests of the individual patient - not what is best for those close to them or what most people in their situation would want. The goal of those making decisions about CANH should therefore be to accumulate enough information to form a clear view of what the patient would have wanted if they still had capacity to make a decision.
The guidance takes us through all the fundamentals of best interests decision-making as required by the Mental Capacity Act (MCA), with an added layer of pragmatic help with meeting those requirements 'on the ground', including a separate appendix with 'Practical guidance for best interests decision-making'.
As examples, the guidance gives practical pointers on the following:
Plus, the guidance includes a new checklist of evidence for best interests decision-making in relation to CANH, which should be held in the medical notes accompanied by supporting information such as records of best interests meetings.
The guidance reflects the legal position as decided this summer by the Supreme Court in the 'Y' case - i.e. there is no requirement for decisions about withdrawing CANH to be approved by the court, provided there is agreement about what is in the person's best interests and provided that the provisions of the MCA and relevant professional guidance have been followed.
If, however, there is any disagreement about what is in the patient's best interests, the guidance makes a number of suggestions for informal resolution, as follows:
If these approaches are not working, consideration should be given to using a medical mediation service.
If these options fail to resolve matters, the guidance suggests that legal advice should be sought to decide whether a court application is necessary.
The guidance emphasises that, where there is disagreement or uncertainty about whether a course of action is in the patient's best interests, the Court of Protection is the ultimate decision-maker and can - and should - be asked to decide. It also makes clear that, where an application to court is needed, proceedings should be brought by the relevant NHS body.
A key element of compliance with the new guidance is the need to ensure that decisions about CANH are subject to proper internal review/audit - e.g. as part of the national Learning from Deaths Framework. This makes it important that information about CANH decisions is recorded in a format that allows it to be easily extracted for review/audit.
The CQC will have a central role to play here in terms of external scrutiny and will be looking carefully to ensure that appropriate processes are in place - and have been followed - in relation to CANH decision-making. If a provider is unable to show that CANH decisions have been properly made and documented, this is likely to impact on CQC ratings and could result in enforcement action.
As an additional layer of external scrutiny, we are expecting Medical Examiners to be rolled out nationally from April 2019 and they will also have a role in checking that decisions not to provide/to continue CANH have been properly made in accordance with the guidance.
Providers and commissioners now need to follow the recommendations in the guidance about what they need to do to support implementation of this.
Specifically, the guidance stipulates that each individual Trust, CCG and independent healthcare provider should develop an implementation plan to ensure there is widespread awareness of the guidance and that health professionals are given the support they need to follow it.
The guidance includes many examples of steps which might need to be reflected in such plans, such as:
The guidance further suggests that there may be benefit in joining with other organisations to develop a local or regional approach to this.
Our national team of MCA and Court of Protection specialists provide responsive, practical advice on all aspects of the law in this area, including:
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