Anorexic woman gets to make her own (incapacitous) decisions, says Hayden J

By Celia Kitzinger, 19 May 2024

“It does not follow that when a judge is satisfied that the presumption of capacity has been rebutted that it is automatically incumbent on the court to take decisions for the protected party…. Sometimes it is in the best interests of the protected party to take decisions for themselves, even when they cannot weigh all the factors into the balance in the way the capacitous can.”  (Hayden J, in oral judgment)

At this hearing before Mr Justice Hayden, “Pam”, a woman in her 40s who has received treatment for anorexia against her wishes under the Mental Health Act for more than twenty years, pleaded with the judge to be allowed to leave hospital.  She wants to be discharged from the Mental Health Act and allowed to return home. She does not want to engage any more with the Eating Disorder Services, but is happy to access symptom management to alleviate the consequences of not eating sufficiently and to improve her quality of life.  

She was, as Mr Justice Hayden said, “a powerful and eloquent advocate on [her] own behalf”.  He made declarations that she should, in future, receive treatment only in accordance with her wishes.  

My original intention was to focus on Pam’s role in the hearing and simply link to the published judgment for the details of the case. But two months later there is no published judgment, and I don’t know if there will be one, so I have revised my original draft and written a fuller report than I originally intended.

The judgment is important because it (again) pushes forward the boundaries on decision-making for the incapacitous, as Hayden J has done previously and most obviously in two other cases: Rotherham and Doncaster and South Humber NHS Foundation Trust and NR [2024] EWCOP 17  and Avon and Wiltshire Mental Health Partnership v WA & Anor [2020] EWCOP 37.  (See also our blog posts about these two cases:  A rock and a hard place: Abortion decision for an incapacitous and conflicted P; “What is he saying to us?” The ‘voice’ of a hunger-striking man in a best interests decision about his medical treatment.).

In those two earlier cases, Hayden J found the protected party to lack capacity to make the relevant decisions (to consent to or to refuse an abortion [NR]), to consent to or to refuse clinically assisted nutrition and hydration [WA])).  But the judge nonetheless left the decisions up to the protected parties. The judge made clear his view that it is in the protected parties’ best interests to be free to choose for themselves and to assert their own autonomy. 

Judgments like this have  been described – by eminent lawyer and commentator Alex Ruck Keene – as “creative”, or even “odd”:

“On the face of it, it might seem somewhat odd for the court at the same time to conclude that the person lacks capacity to make the decision in question, but that it is in their best interests for them to decide what should happen (or perhaps, to be more precise, for their choice to be respected as determinative).   It might also seem somewhat odd for the court to decline, expressly, to make any best interests decision, given that a key part of its statutory raison d’être is to make such decisions on behalf of individuals unable to do so.” (“Exercising legal capacity and termination: A creative approach by the Court of Protection”)

In the context of decisions about treatment for anorexia, however, it is perhaps less surprising. We have seen similar decisions from other judges who have likewise made decisions that it is not in the anorexic person’s best interests to be given forcible treatment against their will, and the choice as to whether or not to accept treatment (or to eat) is left with the person themselves.  For an expert overview of the court’s approach to these cases of severe and enduring anorexia see Expert witness in anorexia cases^[1].

The hearing

It was an in-person hearing before Mr Justice Hayden sitting in the Royal Courts of Justice on 26^th March 2024.  All the parties (including Pam) were in the physical  courtroom,  but a link was available for the witnesses, who included the independent expert appointed by the Trust and the treating psychiatrist (both of whom gave oral evidence) and others including the GP and palliative clinician (who did not give evidence).

The position of the parties was as follows:

Applicant Trust position

The applicant Trust (Southern Health NHS Foundation Trust, represented by Nicola Kohn of 39 Essex Chambers) was seeking declarations that Pam lacks capacity to make the relevant decisions and asked the court to approve its proposal to cease treatment of Pam’s anorexia against her will and to implement a care plan for palliative care in the community.

Since her anorexia diagnosis in 2004, Pam has never achieved a body weight above 38kg (BMI 14.7). The Trust summarised a long list of admissions to treatment units from 2005 onwards, none of which has been effective in curing her anorexia (though they did of course keep her alive).  “With a heavy heart”, they say that “further treatment is likely to be futile, harmful and is not in accordance with [Pam’]s wishes”.  

Official Solicitor position

Pam was represented, via her litigation friend the Official Solicitor, by Parishil Patel KC of 39 Essex Chambers.  The Official Solicitor had considered the available evidence, including in particular Pam’s own articulately expressed view that she has capacity both to conduct the proceedings and to make decisions about her treatment for anorexia.  The Official Solicitor’s view, however, is that Pam lacks capacity in both areas “because her ‘anorexia cognitions’ mean that she is unable to use and weigh the relevant information in making a decision”.  There is, said the Official Solicitor, “a significant risk” that discharging Pam from detention under the MHA and providing only treatment that she accepts and complies with, “will lead to her death”. Nonetheless, Pam’s beliefs and values (albeit distorted by anorexia) “should be afforded significant weight” and the proposed care plan “promotes [Pam’s] autonomy and gives her the best chance of peace and comfort in her life”. 

Cygnet Healthcare Limited position

Pam’s current care provider, Cygnet, was represented by Francesca Gardner of 39 Essex Chambers. They’d had input into the formulation of the care plan and provided input, via the treating clinician,  into current clinical opinion as regards further inpatient treatment for Pam.  The treating clinician had considered the  independent expert report from Dr Pelosi and agreed with his conclusions, specifically that Pam lacks capacity to make the relevant decisions, and that the chances of any specialist eating disorder unit being able to achieve full weight recovery in Pam’s case were remote.  They also referred to Pam’s own statement (also referenced by the other two parties) that if her weight were to fall below 30kgs (she currently weighs 30.6kg, BMI 11.81), then she would accept a brief admission to hospital for refeeding on condition that it was a voluntary admission and that treatment under the Mental Health Act was “off the table”.  Although joined as a party for this hearing, the care provider played a modest role in proceedings.

Professional Witness Evidence

Dr Anthony Pelosi described Pam as “highly articulate, highly intelligent” but said her ability to use and weigh relevant information “is entirely occluded by her preoccupation with her weight”. She is, he said, unable to weigh any information about her anorexia “because of the distorting and all-consuming effects of anorexic psychopathology on discussions about her health and wellbeing as they relate to her nutritional status, her body weight and the shape and size of her body”.  He had considered the possibility of feeding Pam (against her will) up to a BMI of 20, in the hope that this might ameliorate her anorexic psychopathology, but reported that she’d found refeeding to a BMI of 15 as “traumatic in the extreme”, and said that it was very unlikely that she would choose to sustain improvement after discharge from hospital.

The Trust psychiatrist was asked by the counsel for the Trust to explain the basis on which Pam’s refusal of weight gain “is not simply a decision she makes, and an unwise one, but a decision she is unable to make because of an impairment in her mind or brain”.  In response, the psychiatrist described the “severe trauma and suicidal thinking” that Pam experiences when her weight goes above 30kg.  “She understands that she could potentially die, but she’s not able to understand that in a way that those without this level of psychopathology would be able to.  She can’t really comprehend the consequences of not maintaining her weight above 30kg […]. She says she doesn’t want to die, but can’t prioritise that as a more important factor compared with maintaining the weight she wants to maintain”.

Pam’s evidence

Before the lunch break, the judge addressed Pam, saying: “ We’re all talking about a really important decision about your life.  You are an intelligent, articulate woman.  I’d quite like to hear what you have to say about this. I will make the process of giving evidence as relaxed as I can and I’m not going to make you go into that witness box against your will. It’s up to you and you can let me know what you decide when we return at 1.30”.

When the court reconvened, counsel told the judge that “Pam would like to address the court” – and she was sworn in to give evidence.  I’m not sure that what protected parties say in court is technically “evidence”, but in the context of this hearing, with this P, it felt absolutely appropriate that she should be able to address the court, in public, in the same way and with the same formality and gravity as pertained to the doctors who had given evidence about her.   

Pam described what she called the “merry-go-round” of admissions to Eating Disorder Units and coercive treatment.  

Pam:  My weight dips, I stop ticking the boxes that the GP needs me to tick and I’m sent to an Eating Unit under the Mental Health Act. In the Eating Unit I undergo coercive feedings and suffer the despair and depression that brings. They keep you in there until you’re a higher weight and make you do whatever they want you to do. As my weight goes up, my despair and panic goes up. As soon as I’m discharged, I can’t cope at that weight and my weight goes down.

Judge: What does getting your weight up involve?

Pam:  There’s a menu plan, and if I don’t comply with that there’s the NG tube which I’ve been given forcibly because I wasn’t following the menu plan.

Judge: What is involved?

Pam: Six to eight members of staff – they hold your head, arms, middle and your legs, and then another member of staff forces- You’re restrained on a large bean bag and then they take the tube and with some force and effort insert it into your stomach and test it and then they put feed into your stomach while holding you down.  When they did it at [care provider] it took about an hour and a half.

Judge: Did you resist?

Pam: Yes.  And say you’re supposed to have 100mg and you only have 90mg, they give you the whole thing again

Judge: After they did it at [care provider] did you comply with the menu plan?

Pam: I felt I had no choice. I had PTSD from when I was forcibly NG-ed at [earlier care provider], so even though [this care provider] knew I had significant trauma, they put me through that NG now.  If I don’t follow the menu plan that they give me, then I go through the trauma of being forcibly NG-ed, so I’ve been following the menu plan only to avoid that horrendous experience.

Judge:  The treatment for anorexia [inaudible] difficult to understand and get the balance right. If you look back over the treatment you’ve received over 20 years and I were able to make you Professor of Psychiatry, what would you do?

Pam: I think when you are at the start of anorexia, if you can have full weight restoration the first couple of times – treated quite aggressively and, yes, forced NG-feeding, then I think they stand a really good chance. That’s when it’s not so ingrained. Over time, anorexia becomes more and more you. It becomes your new normal.

Judge: Why did that not happen in your case?

Pam: Uhm (silence) I don’t know the answer to that.

Judge:  Why is it too late now?

Pam:  I’ve been trying for the last 10 years or so, being pushed through different weights while being told “if you get to this weight, you’ll feel different” – and it hasn’t happened.  I was pushed to the dizzy height of 38 kilos, under which I felt I was suffocating and unable to leave the house.  Anorexia isn’t about thinness. It’s not about me wanting to look thin. It’s about how it makes me feel inside. It’s about being able to accept myself. It’s about being at peace with myself.

Judge: What is it about being – let’s be blunt – emaciated that makes you feel at peace with yourself.

Pam:  I feel that (silent)…. It…. It makes me feel safe in that…. (silent)…. I’m not taking up too much room in the world. 

Judge: Yes, I’ve heard quite a few women say “it makes me feel disappeared”.

Pam: It’s not that I’ve got a death wish.

Judge: No, I don’t mean that.  Invisible.

Pam: Yes.

[…]

Judge: As I read the care plan now, it is essentially to put you entirely in control of your own destiny.  Wrapped up in different words, but that’s what I read it to be.  When I look back on your prior history, I can’t see a time when you’ve been completely in control.

Pam:  I had an interesting conversation with a lady who’s recovered.  She left the Unit at a reasonably low BMI. What changed her was, all monitoring was off the table, but she said she was sat on the sofa watching her children playing in the garden and she thought, “you know what – I’d really like to play with my children”. And she gained weight.  Weight is at the forefront on my mind. There’s a constant fear that I’m going to get dragged back to the Unit again. If that fear’s removed and I’m sat at home, it’s a sunny day, I can hear people having fun, walking around having fun… It would come from me wanting to get a bit stronger to do that, or go see my mum, or go out shopping with my sister.  It would be coming from me, instead of all this constant anxiety […]. It’s almost terrifying because I don’t know what’s going to happen.  I just know that for the last 20 years I’ve been in and out of Units, none of which has helped in any way, and I would just like the fear and despair to stop now – the fear of being detained in a Unit and forcibly fed.  I would like to have some quality of life. I would like to do what might seem little things to people with a full life, but to me they mean a lot, and I would like to do those things in the comfort of my own home, and with some dignity.

Judgment

Mr Justice Hayden gave an oral judgment in court – no written judgment has been published.  I’ve captured it as best I can here. As always, we are not allowed to record court hearings so this is based on my contemporaneous touch-typed notes.

For twenty years, nearly half her life, Pam has lived with the burden of this condition. In 2011, such was its progression that she was diagnosed with osteoporosis.  She has a long and enduring history of self-induced vomiting and laxative misuse and weight manipulation.  During the course of this short hearing, she gave evidence before me.  As I said to her when she was in the witness box, I found her to be a compelling and articulate advocate – on her own behalf and further, given that this is a condition which the Court of Protection encounters with some frequency, she added greatly to the sum of my understanding and thereby served a purpose for other women in her circumstance.  

Pam is one of three sisters.  Her older sister, Annie, has been interviewed by the Official Solicitor, and during the course of that interview it was clear that she had some considerable insight into her sister’s condition.  Plainly to some degree she’d had problems of her own, which she’d overcome, and throughout her statement was her own almost palpable distress at the prospect of losing her sister – something which I suspect she’ll have lived with for some time, although it becomes more real for her in these proceedings.  The two sisters are obviously close, and although Annie finds each of the available options for her sister to be unattractive in some way, her prevailing wish is that those concerned with her care should not, as she puts it, “give up on her”.  I hope that the declaration I’m going to make shortly will do nothing of the kind. Its objective is different altogether from the anxieties reflected in Annie’s interview. 

I have mentioned Annie’s feelings because hers is the only discordant voice at this stage as to what in the future is in Pam’s best interests.  Those treating her, and the expert instructed to provide a second opinion, have all been able to agree today.

Pam has never in all those 20 years of treatment achieved a body weight above 38kg.  When her weight has been increased during the course of hospital admissions, it has a powerful impact on her sense of well-being. In the witness box, and given a moment or two of hesitation to reflect, she told me her condition is not about wanting to be thin: it’s about wanting to be at peace.  And she finds peace by making herself feel unobtrusive and small. And she agreed with me when I used a word I’ve heard used by other women with her condition – “invisible”.  It is not easy, as Dr Pelosi foreshadowed, to understand the psychology of this – why she would wish to feel invisible or slight.  But in many ways that scarcely matters.  It is that which is the driving force.

Pam has been a hospital inpatient, under s.3 of the Mental Health Act, since June last year.  Recently she has been on s.17 leave and that has allowed her to visit her home…. Those tentative steps back into what we might call the ‘real world’ have, I’m told, gone reasonably well.  

There is a care plan before me with the essential aim of restoring to Pam control, absolute control, over her condition.  The stated aim of the plan is to maximise her autonomy in the community.  Palliative care, as it is termed, is intended to manage her symptoms – and care is available to provide her with support when or if she chooses to engage. 

It would be wrong to think of what has gone before as failure, but the alternative regime has had its own burdens – and saying that doesn’t come close to doing justice to Pam’s lived experience.  The alternative of imposing treatment – in particular force-feeding Pam – is properly described within the documentation as ‘abhorrent’.  I accept that subjugation to that force would be corrosive of her dignity.  More than that, I’m entirely persuaded that such a course would be likely to render life for Pam so traumatic as to be simply unacceptable to her. In blunt terms, if the choice was death or force-feeding, she would rather choose to die. I have no doubt about either the sincerity of that view, or the strength of it.

Mr Damian Cullen, one of the lawyers with the Official Solicitor, met with Pam on 13^th March and did some creative and sensitive work. Pam told him that she believes there were three options to be considered.  First, a community care plan which would, in her terms “stop the merry-go-round”; second, for the merry-go-round [of admission-discharge-readmission] to continue; and third, full restoration of her weight.  In relation to that third option, Pam said if that were to happen, it would bring about her death much quicker.  On the last occasion Pam was subject to force feeding, it was necessary for her (weighing something like 30kg) to be restrained by six people while she was forcibly fed for an hour and a half and resisting throughout.  She described herself as having suffered PTSD from this episode.  Manifestly, and entirely understandably, that episode of prolonged coercion has factored heavily into her decision-making processes in relation to her treatment.  If that is so, it caused me to wonder, despite a heavy and recent professional consensus to the contrary, whether she had capacity to take treatment decisions for herself.

I have heard from Dr Pelosi and from the lead clinician. The nature of anorexia is that it comes to overwhelm almost everything else. That, in simple terms, is what Dr Pelosi and [treating clinician] were saying.  […]

The care plan is at pains to highlight the distinction I’ve been grappling with – that is to say between palliative care, and a diagnosis of dying and the management of the dying process.  This plan is not motivated by an objective to minimise Pam’s care at the end of her life. It is motivated, as I’ve emphasised, by giving her choices for herself.  To choose, I suppose, in effect, whether to live or die.  Because while she may not have sufficient insight into her condition to have the capacity to make decisions about treatment, she is entirely aware of the risk of dying. On this point I do not have any doubt at all.  She is manifestly an intelligent woman. She has – until she was unable to work – an impressive employment history, doing an important job she clearly enjoyed….[…] She finds solace and comfort in her hobbies: cross-stitching, cryptic crosswords, and a keen fascination with modern Russian history.

I asked Pam if she thought the care plan which offered to put her in the driving seat for her own future stood any chance of working in terms of enabling her to establish an eating regime that gave her body sufficient to live on and her mind and brain sufficient to achieve….  She told me she’d spoken to another woman in her circumstances who, when presented with similar options to her, was free to take up responsibility for her own care.  Pam identified the motivation for this woman – seeing her children playing in the garden and wanting to be part of that.

I found her analysis of her own situation cogent, reflective and impressive. In essence, she does not know – as she told me – what the future holds.  But that there are options for the future, and that she recognises that, is plain.  

For all these reasons, I have no hesitation at all in endorsing the care plan.  I consider it to be lawful and in Pam’s best interests to receive treatment, including feeding and weight restoration, ONLY, I emphasise, in accordance with her wishes, and for her to be treated in accordance with the care plan of 26^th March.

I have not found it necessary to read the law and the legal framework into the judgment and I don’t propose to overburden it with that.  […]

It does not follow that when a judge is satisfied that the presumption of capacity has been rebutted that it is automatically incumbent on the court to take decisions for the protected party…. Sometimes it is in the best interests of the protected party to take decisions for themselves, even when they cannot weigh all the factors into the balance in the way the capacitous can.

I do not underestimate the challenges of the future and take this opportunity to wish Pam the very best.  This judgment removes a sword of Damocles she believes to have hung over her head for many years.  

Transparency matters

The hearing ended with a brief discussion about the rather draconian Transparency Order applying to this case (made by Mrs Justice Theis on 9^th February 2024), which prohibits reporting the name of the applicant NHS Trust, as well as the names of not just professionals but organisations caring for Pam “or involved with the planning, arranging, commissioning, reviewing, regulating and/or monitoring [Pam’s] care”.   I had emailed counsel about the terms of this Transparency Order during the course of the hearing and was told it was under discussion. 

Clearly recognising Hayden J’s commitment to transparency, Nicola Kohn raised the matter of the Transparency Order with the judge by saying, “Not to tilt at windmills, but it provides for the anonymisation of the Trust and Cygnet”. 

As expected, Hayden J responded robustly. “We go in this court to enormous lengths to seek to dispel the canard of secrecy…” he said, referring to “the litter of anonymisations” which reinforce the “spectre of secrecy”.  The judge ordered that the Trust, the care provider, and the expert (Dr Pelosi) should all be named (but not the treating clinicians).  He added: “I don’t think the medical profession should shrink away from this conclusion, which is progressive and patient-focussed and one they should be proud of”. 

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia

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^[1] We’ve  also blogged about anorexia cases here: 

•  A tribute to E: How anorexia and ‘Re E’ made me a Court of Protection lawyer
•  Anorexia and refusing nutrition: An observer’s perspective on A Mental Health Trust v BG 
• A Patient with Severe and Enduring Anorexia Nervosa: The need for a declaration and the capacity to make a decision
• Bearing Witness: Anorexia Nervosa and NG Feeding
• “I have reached a clear conclusion that AB lacks capacity to decide whether or not she should be tube fed.” – Commentary on Judgment