Northamptonshire Healthcare NHS Foundation Trust v AB
Summary
This case concerned a 28 year old woman, referred to as AB, who had suffered from anorexia nervosa since the age of 13. At the time of the application she was severely unwell, and her treating clinicians applied to the court for declarations that AB lacked capacity to make decisions 'about treatment relating to anorexia nervosa' and that it was in her best interests not to receive any further active treatment, even though she was at imminent risk of death.
The only possible option for treatment was said to be forced feeding via a tube inserted into her stomach, with physical restraint and sedation required to prevent her from removing the tube. She would need to be hospitalised at least 6 months and sedated as often as twice a day. Neither AB nor her doctors thought this was in her best interests. The case therefore concerned the first question only, namely AB's capacity.
It was evident that AB understood that her life was at risk and what the risks and benefits of treatment were. She filed a written statement in which she discussed her illness and differentiated it from herself, saying that her decision to refuse treatment was 'a decision made by me as opposed to my illness'. She said that she had suffered during previous hospital admissions and had been in a cyclical pattern of admission and discharge with no endpoint. She said she understood that she would die if she did not eat, and the physical risks of the possible treatment, but had realised that she would never defeat the illness and so had chosen her future path: "the decision not to undergo further inpatient treatment is mine. The illness is a part of me, yes. It is a voice, yes. It is a bullying and powerful voice, yes. But the voice making this particular decision is mine. It is a voice made hoarse by screaming, and tearful by the prospect of being forcibly treated against my will – knowing all the while both that any such treatment may cause my death in any event, and that, even were it not to, the likelihood of it 'working' is minute. I do not believe that anyone would agree to undergo further inpatient treatment knowing what it entails, and if told, as I have been, that the chances of 'success' – whatever that actually means – are so low."
It was agreed that AB had capacity to conduct the proceedings, but not that she had capacity to decide to refuse treatment. The Trust said that AB lacked capacity on that issue because she could not 'weigh and use information in the limited sphere of decisions relating to her need to put on weight'. Her beliefs about the need to reduce her calorific intake were 'overvalued ideas' to which she attached such extreme levels of weight that she could not properly weigh in the balance other factors. In a previous assessment in 2019, she had said that having the eating disorder made her feel safe, numbed her emotions and gave her a sense of achievement, and that she feared she would not be able to cope with normal life. The medical view was that there was 'no prospect' of recovery from anorexia for AB.
Having formulated the decision in question as being one concerning the need to put on weight, the court found that AB lacked capacity, as her fixed beliefs about eating and weight were more than just her subjective values, and were preventing her from carrying out an appropriate weighing or balancing exercise. Even though AB understood the options and the risks, her eating disorder infected "to such a significant extent the very nature of her decision making processes which are engaged in relation to food, calories and weight gain that any decisions flowing from those processes cannot be considered as legally capacitous decisions." So, even though AB did not give the wish to avoid putting on weight as a reason to refuse treatment, her capacity was still lacking. She "may objectively appreciate that she will only avoid death in the weeks or months ahead if she finds the ability to overcome this illogical fear but she appears powerless to reach any other decision which will preserve her life. In my judgment, the fact that she does not want to die and sees many reasons to continue living are, in themselves, the clearest manifestation of the extent to which her judgment is impaired in relation to this narrow field of decision making."
As a postscript, a possible appeal on AB's behalf against the finding that she lacked capacity did not proceed on her behalf following her death.
Comment
It was said on AB's behalf that the reasoning as to her lack of capacity meant that no-one with anorexia nervosa could ever be said to have capacity to make decisions about medical treatment for that condition or any related problem. The corruption of her view of reality caused by her eating disorder could not be disentangled from her decision-making, even by reframing the decision in question as one about whether to agree to in-patient admission or palliative care, rather than to put on weight, and so there was effectively a non-rebuttable presumption that people with severe anorexia lacked capacity to make treatment decisions. The submissions put on AB's behalf reflect the proposals set out in the article by Emma Cave and Jacinta Tan (2017). Severe and Enduring Anorexia Nervosa in the Court of Protection in England and Wales International Journal of Mental Health and Capacity Law, which sought to rescue some autonomy for people with anorexia nervosa. It is difficult to disagree with the authors of that article that the court's approach, repeated in a number of cases, does suggest that people with severe and enduring anorexia nervosa will not be able to demonstrate they have capacity in relation to medical treatment or any other decision that touches on their illness.
The case is also of interest as being one of the situations Munby J (as he then was) thought vanishingly unlikely – where P has capacity to conduct proceedings but not to make the decisions in issue:
Whilst it is not difficult to think of situations where someone has subject-matter capacity whilst lacking litigation capacity, and such cases may not be that rare, I suspect that cases where someone has litigation capacity whilst lacking subject-matter capacity are likely to be very much more infrequent, indeed pretty rare. Indeed, I would go so far as to say that only in unusual circumstances will it be possible to conclude that someone who lacks subject-matter capacity can nonetheless have litigation capacity." (Sheffield City Council v E & Anor [2004] EWHC 2808 (Fam)).
It is indeed difficult to see how AB could have capacity to give a solicitor instructions about a dispute about her capacity to make a specific decision, while simultaneously lacking capacity to make that decision, particularly when the basis for her incapacity was said to be an enduring and strongly held belief that infected all of her thinking.
