By Charlotte Buck, 4th August 2022
This case concerned Anorexia and the refusal of clinically assisted nutrition and hydration (CANH) – another sad case brought before the Court of Protection for which the circumstances are all too familiar.
I have always been interested in complex medical-ethical cases and, having volunteered on hospital wards for six weeks myself, I empathise with the struggles of professionals and patients.
During my master’s degree in Medical Law, I had to select a topic for my 15,000-word dissertation. My dissertation, titled ‘Anorexia Nervosa – the Assumption of Incapacity’, meant that I extensively researched Anorexia cases before the Court of Protection, all of which centred on the refusal of CANH. I discovered that in the cases I read, Anorexics were always found to lack capacity to refuse treatment. Cases were subsequently brought before the Court of Protection seeking an order that treatment be stopped in the patient’s best interests. Whilst the proceedings were ongoing, the Anorexic was compelled to endure forced feeding.
The graphic detail of what forced feeding involved and the impact on patients captivated me. On the one hand, individuals, often young women, were dying due to withdrawal of treatment being held to be in their best interests. On the other, these individuals had undergone extensive forced feeding which often contributed to the worsening of their condition.
Having offered to observe Court of Protection hearings, I was, therefore, given my background interests, surprised to discover that my first case as an observer concerned withdrawal of treatment and an Anorexic patient.
I watched three hearings in this case – on 26th April 2022, remotely (before Cobb J) and then on 6th May and 23rd May 2022 in person in the Royal Courts of Justice (before Cohen J). I am reporting on this case some months after these hearings because there was an unusually restrictive Transparency Order preventing publication of details about this case.
The judgment has since been published: A MENTAL HEALTH NHS TRUST v BG [2022] EWCOP 26 and this case has generated mass media attention: for example, “Teen with eating disorder dies, two months after judge said doctors could stop giving nutrition” (Sky News); “Teen with eating disorder dies weeks after court said she could refuse treatment” (Metro). Many people on social media have expressed concerns about the outcome, saying that she was “failed”, “considered a lost cause” or “condemned to death” by the Trust’s application to withdraw treatment, The judge’s decision has been described as “disgraceful” and “devastating”.
However, from the stories published, and the reaction to them, I note that there’s a lack of awareness of what happened during the court hearings and why the decision was reached. I hope that by sharing this blog I can enlighten readers on what occurred during the three hearings and why the judge made the decision he did.
THE CASE
The case (COP 13920979), before first Cobb J and then Cohen J concerned a 19-year-old female referred to in the judgment as “BG”, diagnosed with Anorexia Nervosa, Anxiety, Depression, and Mixed Personality Disorder (although she denied the last). Personality disorder diagnoses are hugely contested with many people challenging their diagnosis. BG had also been diagnosed with Chronic Fatigue and Chronic Fibromyalgia.
The parties in this case were the NHS Trust, BG and BG’s parents. The Trust was represented by barristers from 39 Essex Chambers: Parishil Patel QC for the first two hearings and Nicola Khon for the final hearing. BG was represented by Sebastian Elgueta of Garden Court Chambers. The parents of BG were litigants in person. The Official Solicitor, Mr David Edwards, was in attendance throughout the proceedings.
BG first encountered mental health services at the age of eight. She had been receiving continuous care from psychiatric services since 2018. In early 2022, she had 9 sessions of electro-convulsive therapy. Her nutrition was delivered via nasogastric tube feeding (defined as a ‘medical treatment’ following Bland 1993). It is estimated that she’s received over 1,000 nasogastric feeds under the restraint of no fewer than four staff members, which caused her immense distress.
As emphasised by BG’s psychiatrist, who appeared in court and gave evidence, it has consistently been her wish for all active treatment to stop, even though she is aware that this will lead to her death.
If a person has capacity to do so, they can make their own decision to refuse medical treatment, including refusing CANH, even if this results in death.
While BG and her family asserted that she had capacity to make the decision to refuse nasogastric feeding, the treating team disagreed.
Under Section 4 of the Mental Capacity Act, if a person is found to lack capacity, treatment decisions must be made in their ‘best interests.’
The Trust, therefore, sought an order that it is it would be lawful and in her best interests for BG not to receive any artificial nutrition and hydration against her wishes nor to receive any other medication or treatment against her wishes.
Hearing 1 – before Mr Justice Cobb, 26th April 2022
The first hearing was virtual in front of Mr Justice Cobb and was focused on whether BG had litigation capacity, i.e. the ability to conduct proceedings.
Mr Patel QC emphasised that as BG lacked capacity regarding treatment decisions, the threshold for lacking litigation capacity had been met, meaning the main issue was ‘who should act as BG’s litigation friend?’
In support of this, he referenced Munby J at §49 Sheffield City Council v E [2004] EWHC 2808 (Fam), ‘… only in unusual circumstances will it be possible to conclude that someone who lacks subject-matter capacity can nonetheless have litigation capacity’. The case of Northamptonshire v AB [2020] EWCOP 40, a case in which it was accepted that a young woman with a Severe and Enduring Eating Disorder did have litigation capacity, was distinguished from the present case. Mr Patel QC relied on the psychiatrist’s report which found that although BG had the ability to understand and retain information relating to court proceedings, she could not weigh and balance the issues that the court needs to determine, meaning (he said) that she lacks litigation capacity.
BG’s legal representative and her mother disagreed. Mr Elgueta drew on one specific example where BG had previously agreed to undergo ECT treatment despite having strong feelings against this, because she had been advised that any future court would want to be satisfied that all possible treatment options had been exhausted. Mr Elgueta claimed that this ability to balance legal issues demonstrated BG’s litigation capacity.
Additionally, the consequences of denying BG’s ability to conduct proceedings would mean that she would be deprived of her autonomy and any control over the proceedings. Mr Elgueta emphasised the degree of trust and articulation that would be lost if BG was found to lack litigation capacity.
These concerns were echoed by BG’s mother who emphasised how insightful her daughter truly was and that ‘while she has a mental illness, she retains a level of thinking outside of her illness.’
As summarised as the beginning of the hearing, BG’s parents endorse their daughter’s decision to refuse further treatment, which they see as intolerable with no further therapeutic benefit. This is an incredibly hard decision for any parent to make, my greatest levels of respect were for BG’s mother during proceedings.
After five minutes of reflection and confirmation that the responsible clinician had nothing to add, Cobb J reached the decision that BG lacked litigation capacity.
Despite acknowledging that he must presume capacity to litigate unless proven otherwise, the report of the responsible clinician appeared to sway the decision. In reaching this decision, he emphasised that the responsible clinician was ‘of some standing’ and had treated BG for over a year. Referring back to Sheffield City Council v E [2004] EWHC 2808 (Fam), Cobb J stated ‘on the evidence seen, it has not satisfied the pretty rare criteria’.
Although I had researched Anorexia Nervosa withdrawal of treatment cases extensively during my Master’s, witnessing the case play out was more of an emotional challenge than I had first anticipated. Seeing BG at the first hearing, albeit virtually, was difficult. I could see the pain and discomfort through the screen and her anguish when Cobb J decided that she did not have litigation capacity and therefore could not instruct her own legal team (although the same solicitor and barrister would be retained). One successful outcome of this hearing was that BG’s current litigation friend was permitted to represent her, rather than appointing the Official Solicitor.
In giving directions, Cobb J asked BG her preference on whether the final hearing be heard virtually, which was common practice during the pandemic, or in person. BG emphasised that this case concerned her life and all its aspects and requested that the next hearing should be in person.
It was acknowledged by all that the final hearing needed to occur as soon as possible.
Hearing 2 – before Mr Justice Cohen, 6th May 2022
Everyone, including myself, expected that this hearing in May would be the final hearing and that an order would be made permitting (or refusing permission for) withdrawal of treatment. At this point my view was that the judge would consider it to be in BG’s best interests that an order be made for withdrawal of treatment considering the emphasised urgency at the last hearing.
BG was present in court but behind a curtain, which I had never seen before. She was afraid of people seeing her.
However, this was a different judge.
Whereas Cobb J, the judge at the hearing on 26th April 2022, had not ordered a second medical opinion – considering this not necessary and concerned that it would delay decision-making, at this hearing on 6th May 2022, Cohen J expressed his concern that a second expert report had not been provided, despite the treating psychiatrist previously stating its desirability. ‘I am anxious that there was not a second opinion’ he said, emphasising that the decision before him is of ‘enormous gravity,’ and ‘I am not convinced all avenues have been explored’.
All parties made submissions that the case should continue despite the absence of a second opinion.
Mr Patel for the Trust emphasised that treatment had become an ‘incredible burden’ for all with a significant degree of intolerability and that it should be stopped.
Mr Elgueta emphasised that delaying the final hearing would result in ‘another 4 hours a day of forced feeding which is horrendous’ for BG.
BG (via her barrister’s submission) graphically described the nasogastric feeding as ‘acid under her skin’ and emphasised she found life intolerable.
BG’s mother submitted that although she and BG’s psychiatrist ‘don’t always see eye to eye’, she respects her. She went further stating that currently BG ‘spends 5 hours a day rolling on the floor screaming, scratching herself, pulling her hair… Enough is enough’.
Despite BG’s mother and counsel for all parties making submissions that it was in BG’s best interests to continue and make an order at this hearing, Cohen J found that a decision of such gravity could not be made without a second expert report. ‘I realise every single day is crucial and painful, but I am looking at this objectively’.
The final hearing was postponed for a month.
I heard the impact that this decision had on BG. Her despair came in the form of screaming and wailing which echoed through the corridors of the Royal Courts of Justice.
I kept thinking about this on my journey home. I was going home to have dinner with some friends; she and her family were going home to another month of continued pain and suffering. Another month of ‘acid under the skin’.
A month to you or me may seem a short period. However, when you have been facing a condition like Anorexia Nervosa for over five years and have continuously been restrained, force-fed and your control limited, a month can seem like forever.
I returned home and awaited notice of the final hearing.
Hearing 3 – before Mr Justice Cohen, 23rd May 2022
Two weeks later, I received an e-mail that the case had been moved forward.
It was not until I arrived at the court that I learnt why. BG had taken an overdose to end the life she had seen as so intolerable.
She had been placed at another hospital and the importance of the order was now greater than ever.
BG and her family were willing to concede on the issue of capacity to make decisions to refuse medical treatment, since at that point she was in hospital following the overdose.
At the first hearing, Cobb J had emphasised the need to act quickly. This was reiterated by the barristers in the second hearing. Yet the final hearing had been delayed while a second opinion was sought. While I understand the need for a second opinion in a case of such gravity, I couldn’t help but think that this delay could have been avoided if the necessary second opinion had been sought sooner. If an order permitting withdrawal of treatment had been made at the previous hearing, BG would have had no reason to take an overdose.
The court had now received the second expert opinion from Dr Tyrone Glover, a consultant psychiatrist with a specialism in eating disorder psychiatry.
Dr Glover has been the appointed expert in every Anorexia capacity case I have researched. He has, in previous cases, stated that ‘anyone with severe anorexia would lack capacity to make such a decision’regarding refusal of treatment (See A Local Authority v E).
In this case, Dr Glover agreed with the outcome of the best interests meeting that had concluded that it was in BG’s best interests for active treatment to be discontinued. In his opinion “medical treatment so far, no matter its well-intentioned nature, has not in any way helped BG’s suffering to reduce. It is very reasonable to claim, and I suspect that Dr Z would agree, that it has added further pain. It must be in her best interests now for this to stop”. (§47 of the judgment).
After a brief examination of the psychiatrist responsible for BG’s care, Cohen J made the order that withdrawal of treatment was in BG’s best interests and therefore lawful.
After the order was made, BG’s mother let the court know that her husband had texted her to say that BG had cried with joy and relief at the news. Treatment would be stopped, and she could go home.
Everyone had agreed that it was in BG’s best interests for treatment to be withdrawn. That was not a contentious issue. But what I found interesting was that the Trust’s solicitors notified their barrister after the oral judgment that the judge had not made a ruling on capacity. They had earlier reminded the judge that he had to rule on capacity to refuse treatment first, as a necessary precursor to ruling that treatment could be withdrawn in her best interests. He found BG to lack capacity.
I realise that BG’s capacity to refuse treatment was questionable, and I am not saying that Cohen J made the wrong decision. However, I found it rather sad that BG and her family conceded on their previous assertion that she had capacity to make decisions regarding refusal of medical treatment, and I could not help but wonder if this was to just get an order as soon as possible rather than what they believed (or perhaps the overdose had influenced their perspective).
Comment
After the case concluded, I thought about the future for BG.
Her mother did not rule out the prospect that once BG returned home and “from the torture of NG feeding, BG might feel a little differently and might wish to try drinking a little supplement.”
BG’s treating clinician, Dr Z, when asked by the court, stated that in her opinion BG had roughly seven days left to live once treatment was withdrawn.
In fact, BG went on to live for two months without forced feeding.
I have seen a great deal of concern about this case, and rightly so. No one want to hear that young individuals diagnosed with conditions from which recovery can sometimes be possible, have been allowed to die.
But this case goes deeper than that.
The law retains a strong presumption that all steps will be taken to preserve human life. This, however, is not absolute. “There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery” (Mental Capacity Act 2005 Code of Practice s42). The treatment in this case was CANH, feeding BG against her wishes, with restraint, which has clearly caused significant stress for BG.
After witnessing this case, hearing the poor prognosis and the exhaustion of BG, I agree that this is one of those exceptional cases where the ‘negative aspects of treatment outweigh any potential benefit.”
The decision that continuing treatment was not in BG’s best interests was not made by BG’s psychiatrist alone. BG’s family agreed that continued treatment was futile, as did the independent expert Dr Glover, who concluded that ‘medical treatment … has added further to her pain.’ Although CANH may allow others to retain a healthy weight and to receive further treatment that they want, and/or that is in their best interests, it had not worked for BG. Instead, it worsened her suffering.
The Court of Protection has developed a reputation as a “secret and sinister” court.
Most people when asked why or under what circumstances they could end up in court, focus on the criminal justice system and do not even consider the Court of Protection. However, what this case demonstrates is that this court has the power to make significant decisions – including on life and death. If we lose capacity to make decisions about medical treatment, or where we live and receive care, or who to have contact with – through mental illness, or brain injury, or dementia for example – then any of us, or our loved ones, could end up being at the centre of proceedings in the Court of Protection.
Being an observer allowed me to witness for myself a case concerning the life and death of a young womanl of similar age to myself. It opened my eyes to the struggles of her, her family and the clinical teams who want the best for their patients. I would strongly recommend that anyone, whether they have an interest in the law or not, go and observe a case.
It is the only way to ensure that open justice in the so-called ‘secret’ court is upheld and it enables us to gain a greater insight into cases beyond newspaper headlines (and even the published judgment). Instead of merely seeing the outcome, we experience for ourselves the process by which justice is done, as it unfolds in real time, and as we accompany those at the centre of the case through the weeks and months of the proceedings.
Charlotte Buck is a current Bar Course Student with a particular interest in the Court of Protection and Anorexia cases. She has a Master’s in Medical Law from King’s College London. Charlotte has worked within a hospital setting as part of a BBC 2 documentary titled the Big Hospital Experiment, which focused on young people assisting the NHS. Educating others on Medical Law and the Court of Protection is her motivation for participating in the Open Justice Court of Protection Project. Charlotte tweets @charlotte_jb17
Editorial Note: For our blog posts about another anorexia case in the Court of Protection (Northamptonshire Healthcare NHS Foundation Trust v AB [2020] EWCOP 40 (16 August 2020) see:
Promoting Open Justice in the Court of Protection 
Hello Charlotte What a fascinating read. I am an Associate Hospital Manager across the UK and very interested in the law in relation to the refusal of nutrition and hydration Would it be possible to have sight of your Masters dissertation? Regards Steve Khan
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