Respecting autonomy in treating Anorexia Nervosa

By Sydney White, 29th October 2024

I knew I wanted to research the Court of Protection’s approach to patients with anorexia when I read A Mental Health Trust v BG [2022] EWCOP 26. The truly harrowing facts of that case (also reported by a blogger, here: Anorexia and refusing nutrition: An observer’s perspective on A Mental Health Trust v BG) showed me just how high the stakes are for Court of Protection judges, and how soul-wrenching cases on anorexia can be. 

I recently began my MPhil in Medical Law, studying the relationship between life, autonomy, and the COP’s application of the best interests test to withdrawal of treatment from anorexia patients. That’s why I was drawn to observe Re CC when I saw it listed on the Open Justice Court of Protection Project website, knowing it was about anorexia because Daniel Clark had previously observed it (and blogged about it here: Treatment for Anorexia Nervosa: A brief directions hearing).  It was an opportunity to see what I’m studying in practice, rather than through written judgments. 

The case (COP 20003709 on 22^nd October 2024) was heard by a different judge from previously: it was Hayden J this time. It concerns CC, a 21-year-old woman with diagnoses of anorexia nervosa, depression, and autism. The Trust seeks a declaration that treatment requiring the use of force or restraint is no longer in her best interests, and that she should not be treated against her wishes.  This is also the position of CC’s parents and the Official Solicitor on behalf of CC.

This was my first time observing a hearing, and I observed it remotely. It was an in-person hearing in the Royal Courts of Justice, which I attended virtually via MS Teams. I was impressed with how easy it was to gain access – the link came through about 15 minutes after I sent my original public observer request. I was less impressed by the quality of the virtual hearing. Poor sound quality seems to be a reality of watching in-person hearings remotely – one of the give-and-takes for open justice. 

Counsel for the Trust (Adam Fullwood) began the hearing by drawing attention to the online observers and their potential impact on transparency. Mr Justice Hayden seemed to interpret this as a request for us all to turn our mics and cameras on and state who we were (though Fullwood did not put it in those terms). This was very quickly dismissed by the judge; he said he was fully aware that this was a “sensitive and difficult case”.

Fullwood then made the Trust’s submission: further evidence in the form of a report from a medical expert was required for the court to determine CC’s capacity to make her own medical decisions. This submission was ultimately successful, despite the judge’s concern about the delay this occasions. The expert (Dr Cahill) will meet with CC next week and the next hearing is listed for a day and a half on 30^th and 31^st October 2024.

Proceedings and Autonomy

‘Autonomy’ is a word that comes up often in this area. Judges and patients implicitly define it as the ability to dictate the path of one’s life. In these sorts of cases, it most often refers to the freedom of the patient to decide for herself whether feeding and other treatment for anorexia nervosa should continue and, sadly, how her life should end.

In this hearing, I found it intriguing how CC’s counsel (via the Official Solicitor, Fiona Paterson KC) used the term ‘autonomy’ in relation to the proceedings. Paterson stated that CC “is at the centre of the proceedings which are here to promote her autonomy” and that the “proceedings themselves” exist “for CC to assert her autonomy”. 

It is an important but often overlooked point that long, confusing judicial proceedings can be an added agony for patients and families who are already going through desperately sad times. CC’s ability to directly observe and take part in the hearing was, as Ms Paterson rightly pointed out, of great importance in preserving her autonomy. Ms Paterson stressed the significance of “the very fact we are here today with [CC] sitting beside me”. CC did, indeed, sit right next to Ms Paterson for the duration of the hearing, her elbow propped on the desk and her head resting on her hand, with her parents sitting on the bench in front of her. 

Ms Paterson and CC spoke with each other repeatedly – Ms Paterson seemed to be explaining things to CC, asking her questions, consulting her and genuinely engaging with her. Ms Paterson’s body language was also indicative of a true connection—often bending down and leaning in to CC to listen intently. She stressed how important it was that “at the very least CC leaves court with a greater understanding” of Hayden J’s decision and the proceedings to come.

Similarly, Hayden J had a private ‘judicial visit’ with CC for about 45 minutes. Such visits are key to recognising and supporting patients’ autonomy. Reports from psychiatrists and family members can only do so much; hearing about a patient’s experiences from them, face-to-face, permits and encourages patients to participate in the proceedings, as required by s.4(4) of the Mental Capacity Act 2005. Hayden J, himself, has stated that private judicial visits can be “driven by respect for P’s dignity” and “a signal of respect” to family members (Official Judicial Visits to (Guidance) [2022] EWCOP 5 (10 February 2022).

Given its incredible difficulty (and often lengthiness), it’s encouraging to see the court making efforts to ensure that patients understand and engage with the judicial process to the greatest extent possible. Exercising autonomy by shaping the trajectory of one’s life depends on understanding all the factors at play. So, even though autonomy is so often (and rightly) used in reference to the experiences of anorexia patients in hospitals and clinics, it’s also important not to lose sight of patients’ experiences in the courtroom. 

A ‘Human’ Process for All

As a researcher, it’s easy to get into a rhythm of reading judgment after judgment, a pattern that results in viewing patients and their families as words on a page. The events are summed up into 10 pages of factual background, objective medical evidence, and solemn discussion. Viewing this hearing as a public observer flipped that process on its head. 

Watching the hearing was striking because of the sense of amicability and co-operation between all parties. The atmosphere was inquisitorial rather than adversarial – everyone was clearly determined to work together to reach the conclusion that was best for CC. Indeed, there were moments of chuckling and teasing by Hayden J, like when he remarked to CC’s father that it “must be a common occurrence in your house of… girls; you don’t have a chance to finish a sentence” (CC had been interrupting her father and filling in pauses while he gave his statement.)

The time in the courtroom was not (all) spent wiping tears or sitting in grave silence. The parties shared smiles, laughing at Hayden J’s comment on his (private) “wide-ranging discussion” with CC, which included everything “from ketamine treatment to Balenciaga trainers”.

This is not to say that counsel or Hayden J were not taking the matter very seriously. The judge took very seriously CC’s request to be treated with ketamine, even looking at a report obtained by CC’s father which had not been filed in the proceedings And Hayden J did not beat around the bush, stating to counsel for the Trust (who referred to the current treatment plan as “suboptimal”) that “you can use whatever euphemism you want, but we are still discussing death”. 

The amicability was striking to me because it humanised CC. Listening to her speak and hearing the laughter of the judge and her parents reinforced the fact that the cases I study concern real people who possess quirks and individuality. For example, Hayden J remarked that in his conversation with CC he learned that she was “an avid reader” when young, particularly enjoying psychological thrillers. He recommended that CC read his judgment in Re WA ( Avon and Wiltshire Mental Health Partnership v WA & Anor [2020] EWCOP 37 (16 July 2020) (also blogged here: Hunger Striking for his Identity: Autonomy, Capacity, and Justice), stating that she“may find something in WA that helps her understand the process of the court” and that “whilst it is a totally different case there are some striking parallels”. I was impressed by how, in making this recommendation, Hayden J showed legitimate respect for CC and her individuality. 

There has been no final decision on whether CC has the capacity to make treatment decisions for herself. But by interacting with CC in this way the judge made it very clear to CC (and all watching) that she is and will always be a person, not a combination of various medical diagnoses and trauma. 

This was a reminder that I needed. In my dissertation, I will argue for the protection of the autonomy and dignity of patients with anorexia nervosa. Ironically, as I undertake that research, I must remember that they are more than subjects of compulsory feeding. They are people who laugh and read and wear designer trainers to get through difficult times.

Editor’s update: Sydney also attended (in person) the final hearing in this case and blogged about it here (click on blog title): “An in-person hearing on anorexia (Re CC): Observer’s rollercoaster and the role of ‘hope‘”.

Sydney White is currently undertaking her MPhil (Master of Philosophy) in Medical Law at the University of Oxford, having recently graduated from Oxford’s undergraduate law program. Her dissertation will focus on the relationship between life, autonomy, and the Court of Protection’s approach to cases concerning force-feeding of patients with anorexia nervosa. Her fascination with Medical Law brought her to the Open Justice Court of Protection Project. She can be found on LinkedIn at www.linkedin.com/in/sydney-e-white, on Twitter/X @sydwhiteCOP and on Bluesky@sydneywhite