The British Medical Association and Royal College of Physicians have published today (12 December) guidance (endorsed, unusually but importantly, by the General Medical Council) on decisions about clinically assisted nutrition and hydration (‘CANH’). Work on the guidance has been in train for over a year, and responds to the changed legal environment following the withdrawal of Practice Direction 9E to the Court of Protection Rules 2017 and the cases culminating in the decision of the Supreme Court in An NHS Trust v Y  UKSC 22, which confirmed that the endorsement of the court is not required where the provisions of the MCA 2005 have been followed, along with relevant medical guidance, and there is agreement as to the course of action that is in P’s best interests.
Importantly, the guidance also responds to the body of case-law in which it has been made ever clearer that in cases of prolonged disorders of consciousness, whilst the starting point in considering best interests may be the diagnosis, that is not the end point. Rather, the key question is whether the strong presumption in favour of life is rebutted by evidence as to what the person would have wanted. With that recognition, decisions about CANH no longer stand apart in a special category, but rather take their place alongside all other forms of life-sustaining treatment. To that end, the guidance looks at decisions about CANH on a broad canvas, its focus being on patients who could go on living for some time if CANH is provided, and where CANH is the primary life-sustaining treatment. It addresses three broad categories of decisions:
- decisions about CANH in the context of neurodegenerative conditions;
- decisions about CANH in patients with multiple comorbidities or frailty which is likely to shorten life expectancy, who have suffered a brain injury; and
- decisions about CANH in previously healthy patients who are in a vegetative state (VS) or minimally conscious state (MCS) following a sudden-onset brain injury.
The guidance sets out the level of scrutiny that will be appropriate and proportionate for each of these three categories, with a common core of rigorous best interests decision-making. Indeed, the sections of the guidance on best interests decision-making (including a specific appendix) will be of use to all medical professionals who need to make best interests decisions, not just those concerned with decisions about CANH.
Of course, all the guidance in the world will be entirely pointless unless it is actually followed; further Lady Black in Y (speaking on behalf of the Supreme Court) made clear that compliance with relevant guidance is a necessary precondition for reliance by medical professionals on the defence in s.5 MCA 2005 in the context of decisions about life-sustaining treatment. Crucially, however, individual clinicians can only comply with this guidance if they are supported by properly implemented structures within the relevant body, be that an NHS Trust, CCG, Health Board, or any other body involved in commissioning or providing services to those patients receiving, or who may benefit from CANH. To that end, the guidance includes recommendations (in Appendix 3) for implementation, training and support; more detailed documentation is also to be found on the BMA website.
On the website can also be found:
- A quick reference guide;
- A leaflet for family and friends;
- Model forms available for downloading (in Word so they can be filled in or amended) for best interests decision-making and to document the withdrawal of CANH in the third category of cases set out above;
- Training materials.
At a personal level, having been one of the two legal advisers to the working group, I want to pay tribute to Veronica English and Ruth Campbell, respectively Head of and Senior Policy Advisor Medical Ethics and Human Rights at the BMA. They shepherded an enormous, and crucial, piece of work through with punctilious attention to detail, and consummate grace under pressure. All those listed on the acknowledgments pages played different and important parts, but none more so than Veronica and Ruth.