Anorexic teenager in 10-day induced coma for re-feeding: What next?

By Celia Kitzinger, 14^th December 2024

Update: 20th December 2024. I understand that the Faculty of intensive Care Medicine Legal & Ethical Policy Unit has been concerned about this issue and has been working on Guidance to be published in early 2025. It is very likely to advise that doctors considering putting an anorexic patient into an induced coma solely for re-feeding should get their Trust or Health Board to make an immediate application to the Court of Protection for a best interests determination. We will will to this Guidance when it is published.

A teenager diagnosed with anorexia was refusing food. She was also refusing a nasogastric (NG) feeding tube.

More than a year before, she’d spent time in an eating disorder unit, detained pursuant to s.2 of the Mental Health Act 1983. I don’t know where she was living or what treatment she was receiving (if any) immediately prior to the events that led to this hearing.

By late November 2024, she weighed just under 32kg, with a BMI of 12, acute renal failure and liver dysfunction. The Trust said that she was too medically unwell to be treated under the Mental Health Act [MHA] 1983 and decided to provide treatment pursuant to s4B McA 2005 (according to her doctor).

On 26^th November 2024, doctors gave her a general anaesthetic, ventilated and sedated her, and fitted her with an NG tube, believing this to be in her best interests.

She did not consent to any of this – there was a view that she lacked capacity to refuse the treatment (sic), but no formal capacity assessment was mentioned during the hearing. And it’s not clear (said the Official Solicitor) “how aware [she] was of the proposed treatment plan before it was put into effect”.

The treatment seems to have been effectively to save her life by “re-feeding” her (apparently against her wishes) in an induced coma.  

On the day of the court hearing, she was on the tenth day of an induced coma.  

The Trust had applied to court to seek retrospective authorisation of the life-sustaining treatment they had already provided, and for authorisation of further orders concerning their “Treatment and Restraint Plan”.  

The hearing

The case (COP 20007289) was listed for a remote hearing (via MS Teams) before  Ms Debra Powell KC sitting in the Royal Courts of Justice on 5^th December 2024.  The judge had a busy list, and the hearing (listed for 10.30am) was delayed while she heard other cases. There were also “technical issues” . So the hearing didn’t actually start until 13.11, at which point the judge simply dealt with the various errors in the Transparency Order^[1], and then asked to be told of disputed issues (basically the use of anti-psychotics, it transpired) before adjourning for a lunch break until 14.15.

On resuming the case at 14.15, it became clear that pre-hearing discussions had moved the case along. Conrad Hallin of Serjeants Inn, acting as counsel for the applicant Trust (Ashford and St Peter’s Hospital NHS Foundation Trust) gave a brief summary of how matters stood.

Treatment already provided had been pursuant to s.4B MCA 2005 (according to the Trust).  The Official Solicitor (represented by Nicola Kohn of 39 Essex Chambers) said that “it does not appear to the OS that the treatment thus far delivered to [the protected party] has been anything other than appropriate and provided to her in her best interests“. But it was, she said, “unclear” as to “how, or indeed why s4B MCA 2005 should be relied upon where the initial act of placing [the protected party] in a coma is completed. It is even more unclear how or why the court is invited to apply s.4B retrospectively”.  The OS did not consider that the question of retrospective authorisation for medical treatment should be considered at this time, especially since there was so little information available about that treatment.  The OS wanted to see the medical records, and suggested – on the basis of the limited information available to her – that it could have been appropriate to make an application for lawful authority from the court pursuant to ss. 15 and 16 of the MCA 2005 at the time the treatment was anticipated. But for the purposes of this hearing, she took a “pragmatic” approach: “The priority today is seeing that she is appropriately cared for going forward”. This matter was not further addressed.

Turning to future treatment, counsel for the Trust reported that the patient had responded well physiologically to the treatment she was being given while in an induced coma.  She’d been receiving 1,700 calories a day intravenously, with a plan to increase that by 200 calories a day to reach 2,500 to 3000 calories a day.  The level of absorption was not yet optimum, but that is “as expected“, and it’s likely she would be extubated soon – possibly at the weekend.  (The case was being heard on a Thursday). 

There was a “Treatment and Restraint Plan” before the court, designed to manage her care once she is conscious again.  She will be weaned from the ventilator, the NG tube will be removed, and she will reawaken. At that point, as the OS pointed out, she will realise what has been done to her and will find herself physically altered by weight gain.  It seems likely that she will become “agitated” at this point and the intention is to treat her with low doses of anti-psychotics to manage “emotional dysregulation and negative emotional thoughts”. 

There was an extended (and sometimes rather impassioned) discussion about the legal basis for providing anti-psychotics subsequent to the medical process of extubation.  This related to concerns about the relevant scope of the Mental Capacity Act 2005 (specifically Schedule 1A) and whether treatment should instead be authorised by the Mental Health Act 1983 – with case law (notably Re JS [2023] EWCOP 33) invoked to support both positions.

 The OS suggested that “as soon as she is extubated and no longer ventilated and her physical condition has stabilised, a mental health assessment is carried out forthwith, so the Trust  can consider whether or not she falls under the auspices of the Mental Health Act, and provide a viable framework for providing her with treatment”.  Her concern was that using the Mental Capacity Act 2005 to authorise the use of anti-psychotics on the ward to manage patient behaviour, risked pushing the Act “beyond its proper confines”.   She used and then retracted the word “manipulation” (“that’s stronger than I intend it to be”) to describe “any device that’s devised to put off putting in place a mental health assessment as soon as possible”.   

Council for the Trust confirmed that they would seek a mental health assessment “as soon as she’s fit and well enough for that to happen – which is envisaged before the end of next week”. The problem is that “she won’t fall under the scope of the Mental Health Act until she’s become capable of being assessed”.  He said:  “It can’t reasonably be argued that she falls within the scope of the Mental Health Act before an assessment can take place, and it would be wrong, and artificial, for her to lose out on a treatment that is clearly in her best interests just because of a misreading of the Act – in my submission”.

The OS replied that it’s “not about denying her treatment; it’s about scaffolding her rights appropriately”.  And continued…. 

OS: it can’t be right to say that a patient isn’t within the scope of the MHA if you haven’t assessed them, because you could then not assess them in order not to bring them within the scope of the Act.

Trust: If someone is capable of having a mental health act assessment, maybe. But that cannot be said of someone who is not physically capable of MHA assessment. And the idea that the High Court has no ability to allow that person to have appropriate anti-psychotic treatment must be wrong as a matter of principle.  The Official Solicitor’s position is a mistake of law.  She cannot have a mental health assessment until she’s physically fit and well, and it cannot be right that there’s no way of providing the medications she needs until then.

Judge:  The OS concern was that a mental health assessment might be delayed for whatever reason, and that might mean a longer-than-anticipated period of anti-psychotic medication

OS:  The concern of the OS, without criticising the Trust, is that there’s almost no medical evidence, and the court is being asked to oversee a really significant care plan.  We are simply urging caution.  It’s appropriate that the question of mental health assessment isn’t allowed to fall into abeyance. There is a concern that anti-psychotics are not intended immediately post-ICU but indefinitely.

Judge: Another way of dealing with this is to introduce a limitation in time on how long….

Trust:  “… for such time as is required for a mental health assessment to take place”.

Judge: That is what is causing the OS concern.

Trust: Unnecessarily, in my submission.

Judge: I hear that.

Trust: I can seek instructions, but something like “two  – or three – weeks or until such time as the MHA intervenes if there’s a positive mental health assessment, whichever is the sooner”. What’s important is that authority under this court should fall away if the assessment is positive.

This was followed by some discussion as to whether 14 or 16 days was an appropriate timescale to bring the case back to the court if needed (with reference to Christmas and whether or not there would be “some semblance of a functioning court”). The judge told them to agree between themselves after the hearing was finished, and established that once they’d sorted that out, “that would resolve the draft order”.  

I had been aware throughout the hearing that the father of the teenager at the centre of this case was in court throughout.  I rather doubt he followed what was going on (I struggled with the discussion of the legal framework) and when asked if he wanted to say anything, he responded quite reasonably that he’d been “listening hard but find it hard to navigate”.  He’d previously been asked if he’d wanted to be a party and had said he did not (said counsel).  He seemed content to leave the decisions to doctors and to the judge and said he was “grateful to you all for helping and finding the right outcome for [my daughter].  Everyone in this court – and Dr X and all the medical team.”  His one question was whether his daughter would have someone with her at all times. Counsel for the Trust confirmed that she would be “three-to-one for feeds and a minimum of one-to-one at all other times”.  

And with that, the hearing ended.  

I asked for the approved Order shortly afterwards^[2] but have not received it just over a week later.  I found this a difficult hearing to follow and if it turns out (when I do receive the approved Order) I have misunderstood or misreported some aspect of what was decided by the court, I will amend this blog post accordingly.  

Reflections

This hearing was unlike any other I’ve watched concerning an anorexic patient.  Hearings usually focus on capacity (e.g. can the person make their own treatment decisions – anorexics often argue that they can) and best interests (usually, is treatment against their wishes nonetheless in their best interests). Judges are usually also very concerned to hear the patient’s wishes and feelings and to learn what they want to happen.

In this case, I heard nothing about the patient’s own wishes before she was placed in an induced coma – other than, of course, her refusal of food and NG tubes. And now nobody can ask her about her wishes because she’s unconscious. Presumably her father could have given some account of what he thought her wishes and feelings might be, but he wasn’t asked (at least, not in the hearing) and didn’t volunteer.

The capacity issue was a foregone conclusion – and the cause of the lack of capacity at the time of the hearing was not the anorexia but the fact that the patient was in an induced coma. For now, and for some period after she was ‘brought round’ she would clearly not have capacity to make her own treatment decisions. After that, when she returned to her usual level of mental functioning, it wasn’t clear (to me) what her capacity in relation to treatment decisions would be. Presumably it wasn’t clear to the court either, as only an interim capacity declaration was made. 

And it seemed to be taken for granted that it would be in her best interests to receive anti-psychotics and other medication associated with recovery from ICU – and subsequently also, in order to prevent tube removal and manage her predicted “agitation“. The only area of debate in court was whether it was the Mental Health Act or the Mental Capacity Act that provides the legal framework for anti-psychotics on the ward. I was struck by the fact that nobody mentioned psychological therapies (but perhaps they were part of the “Treatment and Restraint Plan” that I’ve not seen).

In practice, NG feeding contrary to a person’s stated wishes is usually delivered to young people with eating disorders under the Mental Health Act 1983^[3] (rather than the MCA). Although it often involves forms of physical or chemical restraint, that rarely extends to the extreme of a 10-day induced coma. I do have questions about how it came about that this young woman got sick enough that an induced coma became (apparently) the only way of saving her life. Could nothing have been done sooner? More than a week in ICU is not a safe intervention (especially for someone with anorexia^[4]). 

Research finds that although receiving compulsory tube feeding is, not surprisingly, traumatic at the time (and sometimes leads to PTSD subsequently), patients are frequently grateful for it later^[5].  As one ‘expert by experience” puts it: “Although I don’t remember the event clearly, I was NGT fed under resistance as a 17-year-old on an eating disorders unit. It was horrible to have part of my free will stripped away from me, but looking back, there were no alternatives. I was too unwell to think logically. I’d completely given up and didn’t understand or care what the consequences were. Eight years on, I’m grateful. I’m in my second year of studying medicine and have been fully recovered from anorexia for years”. ^[6]

Stories like these are reassuring, since the anorexics I usually see in the Court of Protection are desperate for compulsory treatments to stop, having found them (as one woman said) “traumatic in the extreme”.  I realised while listening to this case that the anorexic patients I’ve heard from in past hearings are all somewhat older than this teenager: one woman in her forties says, “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” (see Anorexic woman gets to make her own (incapacitous) decisions, says Hayden J).  For a teenager, “aggressive” treatment may be more justifiable.   

I doubt it feels that way to this young woman at the moment though.

I have searched for, and not found, evidence-based research and professional guidelines about re-feeding anorexic patients in induced comas under general anaesthesia. I have many questions. Under what circumstances, and having exhausted what options, is it recommended that refeeding in an induced coma should properly be offered (or compelled) for these patients? What are the potential benefits and harms that require to be weighed up by doctors and other decision-makers contemplating this course of action?  Are there follow-up studies assessing the long-term effects of refeeding under general anaesthesia (e.g. do the patients so treated go on eventually to recover from anorexia when they would otherwise have died, or do they experience a ‘revolving door’ of admissions? do they report significant trauma or PTSD from this treatment? what psychological therapies do they need by way of support relating specifically to the intervention rather than the anorexia per se?). What can we learn from people who’ve experienced re-feeding in induced comas – either with or without their consent or agreement? Without answers to these questions, it is not obvious to me that this young woman has been receiving the right treatment.

I am aware that there are strongly divergent views about treatment for anorexic patients contrary to their wishes and there has been criticism of the Court of Protection both for ordering treatments that patients are refusing, and (more recently) for not ordering that patients should be treated against their wishes. In this case, treatment was already under way, so that was not a decision the court was required to make.

UPDATE (16th December 2024): Since publishing this post, I have been referred to the Royal College of Psychiatrists Guidance on Medical Emergencies in Eating Disorders. It is a helpful and detailed document and I’m working my way through it. I have not yet located its advice concerning induced coma.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 580 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and also on X (@KitzingerCelia) and Bluesky @kitzingercelia.bsky.social)

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^[1] The Transparency Order erroneously anonymised the Trust  (Ashford and St Peter’s Hospitals NHS Foundation Trust) and (bizarrely!) the advocate representing the protected party (Nicola Kohn): the judge ordered variations to permit naming both. The Trust also sought to make changes to the TO regarding the protected party’s initials (which the judge approved). After the hearing, I noticed that the Transparency Order included this on the face of the Order (upper case in original): “YOU SHOULD READ THE ORDER CAREFULLY AND ARE ADVISED TO CONSULT A SOLICITOR AS SOON AS POSSIBLE”.  I have never seen this on a TO before (and I’ve seen around 500 of them). So I wrote to the judge (and to the Vice President of the Court of Protection, Theis J, who had made the Order in the first place) to express my concern that members of the public were being advised to consult a solicitor as the ‘price’ of observing a hearing.  I explained that this does not accord with the judicial aspiration to transparency.  I was subsequently sent an amended Order with this sentence removed (and the other matters corrected).  It is unfortunate that court time is being taken up with basic errors like this when judges are under pressure dealing with the substantive business of the hearings.  

^[2] We are entitled to approved Orders from public hearings under COP rule 5.9 which reads: “Supply of documents to a non-party from court records. 5.9.—(1) Subject to rules 5.12 and 4.3(2), a person who is not a party to proceedings may inspect or obtain from the court records a copy of any judgment or order given or made in public.”

^[3] Fuller SJ, Thomson S, Tan J (2022) Nasogastric tube feeding under restraint: practical guidance for children’s nurses. Nursing Children and Young People. doi: 10.7748/ncyp.2022.e1457

^[4] Seller, C.A. and Ravalia, A. (2003), Anaesthetic implications of anorexia nervosa. Anaesthesia, 58: 437-443. https://doi.org/10.1046/j.1365-2044.2003.03130.x (especially for someone with anorexia) and can itself cause a cluster of psychiatric symptoms often known as “ICU Syndrome”. How did it get to this stage? What other possibilities were considered along with way?

^[5] Tan JOA, Stewart, A, Fitzpatrick, R, Hope T, (2010) Attitudes of patients with anorexia nervosa to compulsory treatment and coercion, International Journal of Law and Psychiatry 33(1): 13-19.

^[6] Fuller, SJ, Chapman, S, Cave E, Druce-Perkins J, Daniels P, Tan J 92022) BJPsych Bulletin https://www.researchgate.net/publication/359067593_Nasogastric_tube_feeding_under_physical_restraint_on_paediatric_wards_ethical_legal_and_practical_considerations_regarding_this_lifesaving_intervention#pf5