Capacity and Contempt of Court: The case of LB

By Celia Kitzinger, 18th December 2024

The hearing I observed on 5th December 2024 (COP 14045574) before HHJ Tucker sitting in Coventry was an application to send someone to prison.  The hearing lasted for about 35 minutes and I was able to observe about 20 minutes of it, missing the beginning due to not having been sent the link until half an hour after the listed start time.

There are new allegations that LB (the initials used in the previously published judgments) has breached a court injunction – an injunction she’s breached many times before.  At an earlier hearing she received a suspended sentence of five months in prison, on condition of no further breaches.  If she is found to have breached the injunction again, it is expected that she will now serve that prison sentence.

Recently, however, an expert has provided a report saying that LB doesn’t have the requisite mental capacity – which would mean (said the judge) that the injunction should not have been made and no further steps can taken in relation to committal.  The other parties (the Local Authority and the Official Solicitor [acting for the protected person]) do not accept that expert opinion and there’s a full-day hearing on 19th December 2024, where the expert will present her evidence and be cross-examined.

Background

The protected party, X, is “an intelligent young adult” who has suffered very serious physical, emotional and sexual abuse from LB.  X wants to maintain a relationship with LB but not to be subject to bad behaviour from LB which, according to the published judgments, includes demanding money, asking X to have sex with men to pay LB’s debts, including drug debts, and selling (or threatening to sell) intimate images of X (Lincolnshire CC v X & Ors [2023] EWCOP 52). 

Injunctions made by Mrs Justice Lieven were served on LB (and another respondent) on 5th May 2023.  The injunctions said that neither of them should have contact with X – not by telephone, by post, or via social media.  

On that very date, immediately after receiving the injunctions forbidding contact, LB phoned X, saying it was “all lies”.  She phoned again multiple times that month, as did the other respondent, asking X to stop the injunctions (obviously not within X’s power), and asking for money from X, and variously claiming that LB was in a coma in hospital and “dying and it is all your fault”, and that LB was prostituting herself.  The judge found this behaviour to be “manipulative”,  “cruel and calculating”.  In a subsequent hearing, she found  “very little evidence… of any genuine remorse on the part of the respondents”.  Given that X also values and wants to maintain a relationship with LB, LB’s behaviour caused X “intense distress, upset and confusion”.  The judge sentenced both LB and the other respondent to a period of 5 months in prison.  Since there had been some months’ gap between the last breaches and the sentencing hearing, the judge suspended the custodial sentence on condition there were no further breaches (Lincolnshire CC v X & Ors [2023]  EWCOP 53). 

To protect X, who is anxious, frightened and “dysregulated”, due in part to her diagnoses and mental health conditions, and also as a consequence of these proceedings, the committal proceedings were – very unusually and after careful consideration – held in private. The two published judgments concern first, the decision, made in the context of the judicial commitment to open justice, to hold the proceedings in private (EWCOP 52); and second, the committal decision (EWCOP 53). 

The hearing of 5th December 2024

When I saw the listing for this case, I assumed that it was nothing to do with the committal, but rather that it concerned decisions for X’s ongoing welfare.  That’s because it wasn’t listed in accordance with the Practice Direction for Committal for Contempt of Court hearings: it didn’t say it was a committal hearing and didn’t name either an applicant or an alleged contemnor (which listings for committals are supposed to do) so I had no reason to think that’s what it was.  But it turned out to be exactly that. 

It took some persistence to gain admission to the hearing.  I asked for the link the evening before (19.22 on 4thDecember 2024), resent the request at 09.19 the following morning, and finally received the link at 10.30am for the hearing, which of course had already started.  I gather it started around 15 minutes before I joined.

The applicant was LB and as I joined her lawyer, Will Harrington (of Harrington Solicitors), was saying that “the defendant has a report saying she’s not got capacity, so this is a live issue”. 

I gathered that there had been a previous hearing a month earlier (4th November 2024[i]) at which LB’s solicitor had raised concerns as to whether LB: (a) has capacity to conduct these proceedings; (b)) understands the terms of the injunction made by Lieven J; and (c) understands the condition attached to the suspended sentence previously imposed by the court.  Proceedings had been adjourned to allow for her capacity to be assessed by a consultant psychiatrist, whose report was now before the court.  I think it is being said that she has, or may have, a learning disability as the “cause” of her lack of capacity.

Concerns have been expressed about the quality of the report.  The psychiatrist “appears to be raising the bar of capacity to conduct these proceedings, and understand the terms of the injunction too high” said counsel acting for X via the Official Solicitor  (Benjamin Harrison, Serjeants’ Inn Chambers). 

The judge decided that the hearing on 19th December will be used to determine LB’s capacity.  Either she will have the requisite capacity, in which case her lawyer can take her instructions and the committal hearing will proceed (with reasonable adjustments if necessary, e.g. “it might need to go slower”).  Or she won’t have capacity, in which case the judge hoped to get the Official Solicitor on board to represent her (obviously with a different lawyer from the one representing X via the OS).  “The point I’m making,” said the judge, “is this. Can I ask the OS to be effectively on standby so they can become involved in these proceedings at short notice?”

Counsel for X said he thought that was “a proportionate and appropriate way forward”.  

Counsel for LB said he had “a preference for the OS to be instructed today, but can understand the view that is putting the cart before the horse”.

The judge pointed out that she could “invite the OS to act for the defendant in the light of the report, but it’s a live issue with regard to capacity, which will be determined on the 19th.  It’s up to the OS what she wants to do.  If she says ‘no’, and declines the invitation, well, fine.  If she says ‘yes’, there we are – and she may have to step away at a later point if LB has capacity.  Does anyone oppose that process?”.  Nobody did. 

There was then a brief discussion about the advisability (or not) of inviting an addendum report from the consultant psychiatrist prior to the next hearing – as submitted by LB’s counsel, who was “uncomfortable that [the psychiatrist] whose duty is to the court is going to be ambushed by questions she has no notice of.  She should have notice of questions from the litigation friend so she knows what the issues are. The evidence will be better for having had time to think about the issues raised by other parties”.  Counsel for the Local Authority (Jack Anderson of 39 Essex Chambers)  expressed concern about “cross-examination by email” and counsel for X referred to “full-throated remarks in my Position Statement saying the expert has got things wrong”. I think the outcome was that there was no invitation to provide an addendum report, but that the judge ruled Position Statements should be provided to the expert in advance of the hearing (and I think she said the rest of the bundle too).

Reflections

I’ve watched several committal hearings this year at which a question mark has arisen as to whether the person found to be in contempt of court (and facing a prison sentence as a consequence) has the requisite mental capacity – by which is meant, separately, (a) their capacity to conduct the proceedings; and (b) their capacity to understand and make decisions about the injunction itself. I’ll start by outlining what I understand to be the law in this area – bearing in mind I’m not a lawyer and happy to be corrected by those who are.

An injunction can be made against a protected party (i.e. a party, or an intended party, who lacks capacity, within the meaning of the Mental Capacity Act 2005, to conduct the proceedings), but only if he or she understands the nature and requirements of the injunction (Wookey v Wookey [1991] 3 All ER 365). This is because the test of capacity to conduct proceedings and the test of capacity to comply with an injunction are two  different tests (see P v P (Contempt of court: Mental capacity) [1999] unreported).

Capacity to conduct proceedings is set out in case law predating the Mental Capacity Act 2005: Masterman-Lister v Brutton & Co. [2002] EWCA Civ 1889 – but in terms clearly congruent with the Act, being based on early reports on which the Act was based.

“§79. The Judge found assistance in recommendations made by the Law Commission in 1995, in Part III of its report Mental Incapacity (Law Com No 232). The report drew attention… to the need that a person should be able both (i) to understand and retain the information relevant to the decision which has to be made (including information about the reasonably foreseeable consequences of deciding one way or another or of failing to make any decision) and (ii) to use that information in the decision making process. I that that he was right to have regard to those recommendations. I think he was right, also, to have in mind the qualifications … that a person should not be held unable to understand the information relevant to decision if he can understand an explanation of that information in broad terms and simple language; and that he should not be regarded as unable to make a rational decision merely because the decision which he does, in fact, make is a decision which would not be made by a person of ordinary prudence.“

Capacity to conduct proceedings is fleshed out in more detail (albeit in relation to matters that sound very different to those with which the Court of Protection is concerned) in Bailey v Warren [2006] EWCA Civ 51:

“…The assessment of capacity to conduct proceedings depends to some extent on the nature of the proceedings in contemplation. I can only indicate some of the matters to be considered in accessing a client’s capacity. The client would need to understand how the proceedings were to be funded. He would need to know about the chances of not succeeding and about the risk of an adverse order as to costs. He would need to have capacity to make the sort of decisions that arise in litigation. Capacity to conduct such proceedings would include the capacity to give proper instructions for and to approve the particulars of claim, and to approve a compromise. For a client to have capacity to approve a compromise, he would need insight into the compromise, an ability to instruct his solicitors to advise him on it, and an understanding of their advice and an ability to weigh their advice…” §126 

The ability to manage the dynamic nature of proceedings is emphasised by Macdonald J in TB v KB and LH (Capacity to Conduct Proceedings) [2019] EWCOP 14: he said that legal proceedings are “not being simply a question of providing instruction to a lawyer and then sitting back and observing the litigation, but rather a dynamic transactional process, both prior to and in court, with information to be recalled, instructions to be given, advice to be received and decisions to be taken, potentially on a number of occasions over the span of the proceedings as they develop.” (§29)

Capacity to understand and comply with injunctions means being able to understand the orders made, and having the capacity to obey them (Wookey v Wookey [1991] 3 WLR 135 ).  In P v P,  the Court of Appeal held that a limited degree of understanding could be sufficient to found liability for contempt. There was no need for a full understanding of the finer points of law provided the contemnor understood what he must not do and what the consequences of a breach might be. It’s also been observed that a person might well understand the terms of an order when explained but then, by reason of their mental impairment, be unable to make the decisions necessary to comply with that order thereafter (Cooke v DPP [2008] EWHC 2703 (Admin)).  Where there’s evidence, retrospectively, that – due to an impairment in the functioning of their mind or brain – the person did not understand the injunction at the time it was made, or was unable to make decisions to comply, then the injunction should not have been made in the first place and proceedings against them must end. 

Committal hearings are not particularly common in the Court of Protection, and committal hearings at which the suggestion is made that the presumption of the contemnor’s capacity is displaced are even less common.  I’ve observed two others recently – in both cases (as in the one I’ve reported on above) after prison sentences were handed down.

1. James Grundy

There’s a published judgment from August 2023 (Committal for Contempt of Court: Derbyshire County Council -v- Grundy) which sentences Mr Grundy to 28 days in prison for having visited P, unsupervised, at her home on two separate occasions in breach of the injunction forbidding this. 

The sentence was suspended – but just a few months later, on 15th January 2024, the case was back in court.

Mr Grundy’s solicitors, who previously accepted that Mr Grundy had capacity to instruct them, now said his capacity was in doubt, and his social worker had produced a report saying that he did not have capacity to conduct the proceedings. 

The judge asked whether the Official Solicitor would be willing to act for James Grundy at the next hearing, which is what happened six weeks later.  The OS took the position that that expert evidence was required as to Mr Grundy’s capacity and that such evidence ought to be obtained prior to any substantive orders being made on this application. The judge ordered an expert assessment. (I blogged about the case here:  Committal and sentencing with a possibly incapacitous contemnor.)

A subsequent committal hearing listed for 15th October 2024 was vacated, and I was then unaware of subsequent hearings (though the judge reports that they were correctly listed) until the judgments were published reporting the outcome. James Grundy was found to have capacity to understand the injunctions against him; breaches of those injunctions were proved (the judge watched “irrefutable evidence” in the form of footage from police body-worn cameras showing Mr Grundy visiting P’s house in breach of the injunction), and Mr Grundy was sentenced to 28 days immediate imprisonment (see Derbyshire County Council v. James Grundy (by the OS) and P (by SB, her litigation friend). Derbyshire County Council v Grundy [2025] EWCOP 1 (T1) (20 January 2025); Derbyshire County Council v Grundy [2025] EWCOP 2 (T1) (29 January 2025)).

2.   Lioubov (Luba) McPherson

Luba McPherson received a prison sentence of four months – handed down by Poole J in the Court of Protection because she repeatedly breached court orders forbidding her from posting articles, videos and audio-recordings of her daughter on social media. She has done so, she says, “ to show the distress that my daughter suffers daily, because so-called professionals keep my daughter in deliberately induced illnesses to suit the agenda that she lacks mental capacity“.  She refers to her daughter’s treatment as “torture” (all quoted in the judgment, Sunderland City Council v Lioubov Macpherson  [2023] EWCOP 3)[ii]  

On 3rd December Ms McPherson had intended to appeal against this prison sentence in the Court of Appeal but found instead that her capacity to conduct the proceedings was in question – something she vigorously contests. 

The published judgment from the Court of Appeal reports that Ms McPherson’s solicitor, and other members of her legal team, became concerned about her capacity to conduct proceedings during the course of a conference with her in preparation for the Court of Appeal hearing and “she was invited to participate in a capacity assessment which was arranged for 18 November 2024 with Dr Pramod Prabhakaran a psychiatrist experienced in conducting capacity assessments for the Court of Protection”. She declined “in strong terms” ([2024] EWCA Civ 1579).  The court gave permission for Dr Prabhakaran to conduct a paper-based assessment of Ms McPherson’s capacity (i.e. without meeting her, based on emails and other documents Ms McPherson had sent to her legal team). On the basis of those documents, the psychiatrist found on the balance of probabilities “the possibility of a delusional disorder” and that  “due to her firmly held beliefs which persist despite evidence against these, on balance, her ability to use and weigh up information relevant to the court proceedings is likely to be affected as a result”.  The Court of Appeal, having “reason to believe” that Ms McPherson may lack capacity, has referred the case back to a High Court judge for determination and continued the stay of the sentence of imprisonment pending a decision on her capacity, after which the case will return to the Court of Appeal. We will be blogging updates about this case (and will link to them here in due course).

I don’t know how contemnors in general feel about the view that they may lack relevant capacity in relation to committal proceedings (they may simply be relieved that it means no prison sentence) but Luba McPherson made it very clear to the Court of Appeal that she is outraged by any such suggestion. The person’s own views about their litigation capacity are included in the “Certificate: Capacity to Conduct Proceedings” intended for use by capacity assessors as a standard form of report on the matter.

In conclusion: Together, these three cases raise serious concerns about the Court of Protection approach to the people (almost always family members) against whom judges make injunctions and issue committal proceedings. The intention of these injunctions to to protect (what the court determines to be) P’s best interests – and to deter actions contrary to those. When there are different views about P’s best interests between court and contemnor, or when the contemnor is simply unable to understand or comply, or refuses to do so, the situation rapidly becomes deeply problematic. It’s rarely the case that P actually wants to see their family members or close friends sent to prison. It seems to me that (on the whole) judges and lawyers (especially of course the Official Solicitor acting for the protected person whose best interests were the focus of the case from the start) are very much alive to these concerns, but nobody seems to know how best to address them.  

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)

[i] I don’t know for sure, and I can’t now check because we can’t search for past hearings in Courtel/CourtServe, but I strongly suspect that the 4thNovember 2024 hearing, like the one I’m reporting on here, was also incorrectly listed and did not comply with the Practice Direction.  We are always on the look-out for interesting hearings and we scan the lists every day. It’s unlikely we’d have missed a hearing that said it was a committal hearing.

(ii) We’ve been following this case for a while, and have previously blogged about the committal hearings (see: “A committal hearing to send P’s mother to prison”; and “Warrant for arrest of P’s mother “; see also “An ‘impasse’ on face-to-face contact between mother and daughter” for some background to the case). Luba McPherson had already made an unsuccessful appeal against the custodial sentence as a litigant in person: the judgment dismissing her appeal is here:  Lioubov Macpherson v Sunderland City Council [2023] EWCA Civ 574.

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

By Celia Kitzinger, 14th 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 26th 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 5th 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)

[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

A mother now free to tell her Court of Protection story

By Amanda Hill, with Heather Walton and Celia Kitzinger, 10th December 2024

Something significant happened in the Court of Protection on Wednesday 30th October 2024. 

Not within the grandeur of the Royal Courts of Justice with a blaze of media attention, but in a regional court: Bournemouth and Poole. 

The case (COP14106873) was listed the evening before on Courtel/CourtServe, along with 30 or so other cases for that day. Most people would probably have missed it. It was listed as “Vary the Transparency Order”. I knew about it because I had blogged about the case before.

The decision the judge made at the end of this hearing was that, very unusually, a family member of a living P was allowed to identify herself as such. Although this decision was made on the facts of this individual case, I believe that it is a decision that should have ramifications for other family members who want to tell their Court of Protection story openly. These are stories that deserve to be told but are often banned by Transparency Orders, so the judicial decision that this mother can tell her story should inspire others to consider making applications as well.

Back in August, I (Amanda) wrote a blog about “HW”, who wanted to tell her story about being involved in a Court of Protection (COP) case: She wants to tell her Court of Protection story but will the court allow her?

The Transparency Order covering her daughter’s case, like the Transparency Order in most COP cases, prohibited family members from even saying that they have a relative who is or has been involved in a COP case. 

HW (now I can call her Heather) applied to have the Transparency Order varied (changed) so that she could talk about her experience of the Court of Protection openly, in her own name. 

Celia Kitzinger, co-director of the Open Justice Court of Protection Project, supported her application and acted as Intervenor in the case. 

At a (remote) hearing on Wednesday 30th October 2024 before District Judge Bridger sitting in Bournemouth and Poole Combined Court Centre, the judge approved Heather Walton’s application.

In this blog, I’ll set out the arguments for and against the application from the various parties, and the judge’s decision and the reasoning behind it. Heather, P’s mum, adds her thoughts too, and Celia rounds the blog off with her own comments.

The hearing

At the beginning of the hearing, the judge organised a “batting order”: Heather Walton as the applicant (acting as a litigant in person) was asked to speak first, followed by Celia Kitzinger as the intervenor who supported her application.  They were followed by P’s litigation friend the Official Solicitor and P’s father (who were both neutral about the application), and then counsel for the local authority (Wokingham Borough Council) who opposed it. 

Applicant:  Heather Walton

Heather made a moving and passionate plea to the court to allow her to tell her story as a parent of a protected party so that she will be able to support other families going through the Court of Protection process and help educate social workers and other professionals about what it is like for a family member. Here’s what she said (thank you to Heather for sharing her notes with me):

“Speaking from the heart, I adore my daughter, she gives me so much joy and I’ve met so many amazing people from being her mum. It’s important that the court understands that. 

I do not see that varying the Transparency Order, as I’ve asked to, will cause her any possible harm. Of course, if I thought it would, I would not be making this application. 

 I didn’t choose to be involved in these proceedings – neither did my daughter. That’s true for most families involved in the Court of Protection. 

The court has worked to ensure my daughter’s best interests and I’m grateful for its decisions. My daughter is settled and happy. 

Although I believe the outcome is a good one for my daughter, the whole process of court involvement is something that I have found stressful and upsetting. It’s not a criminal court, but it’s hard not to feel that you’re being judged and that you’ve done something wrong and to fear the power of the court. I’ve learnt that many families feel that way.  

Sir James Mumby said there was “a need for greater transparency in order to improve public understanding of the court process and confidence in the court system.”

This variation will give me the opportunity to help other families going through the process to feel supported and less isolated, something that I know I personally would have really valued during this experience. It will mean I can talk with social workers and those in the legal profession and help them to understand what families’ experiences are.

I’m not asking to name my daughter. 

I’m not asking for the release of court documents. 

There’s nothing in the Transparency Order at present to prevent me from discussing publicly in the press, online or anywhere else any aspect of my daughter’s private life – or my own life, or other family members. The only thing the Transparency Order prevents me from saying is that we’ve been involved in Court of Protection proceedings – that [Daughter] has been a “Protected Party”.

So the arguments against varying the Transparency Order on the grounds that private information about [my daughter] could “get out” into the public arena are null and void because the Transparency Order does not prevent me from talking about my daughter’s private life. It only prevents me from saying she’s a “Protected Party”. 

I haven’t disclosed personal information about my daughter to people inappropriately.  I don’t want to.  I want to talk about the role of the Court of Protection in family life.

I have a right to free speech, and believe that there is a legitimate public interest in understanding more about Court of Protection proceedings, as well as a real need for training for social work and legal professionals. 

There is also a huge need to offer support to families going through the process. 

I am willing to give reasonable undertakings to protect my daughter’s privacy. I have always respected my daughter’s privacy and I will continue to do so, whatever the decision today.”

Heather said that she would be willing, if required, to make “undertakings” to the court – for example (as suggested by the Official Solicitor), she would be prepared to say simply that she was a “family member” of the protected party – rather than identifying herself as P’s “mother”.   She pointed out, though, that this would negate some of the benefit she thought she could bring to other families, as a parent has a particular role and point of view. 

Intervenor: Celia Kitzinger

Celia said that she was appearing on behalf of the Open Justice Court of Protection Project (OJCOP), which had been set up to support the judicial aspiration for transparency. 

She emphasized the purpose and effect of a Transparency Order.  It is made to protect P’s privacy (not that of other people except in so far as that might impinge upon P) and it’s quite circumscribed in scope.  It applies only to information about the protected party in relation to the court proceedings.  There is nothing in the Transparency Order to prevent Heather Walton from talking with parents of other children with Down Syndrome or disabilities.  The Transparency Order does not prevent her from talking to social workers about how they could provide better support for parents with disabled children.  It does not prevent her from sharing her experiences with journalists either.  Heather Walton can do all these things without breaching the Transparency Order.  The only thing the Transparency Order prevents her from doing is talking about that which relates to the Court of Protection proceedings.

The only new information that the variation Heather was seeking would reveal to the world, is information about the Court of Protection proceedings themselves: that they happened, and what the court experience was like for her.  She would be able to say: “I’ve been through it; this is what it’s like”. 

The Open Justice Court of Protection Project is often approached by people anxious about possible forthcoming proceedings, and helps with understanding how it’s an inquisitorial (rather than adversarial) process, explains that family members can write statements for the court, can speak to the judge, and that – if they are litigants in person – the judge is supposed to help them in line with the Equal Treatment Bench Book. And Heather wants to contribute to this public education and support about the Court of Protection.  That’s her key interest – not revealing private information about her daughter.  Celia ended by saying that preventing Heather from talking about her experience has a chilling effect on transparency and open justice.

The Official Solicitor (representing Heather’s daughter)

Counsel for P, Rachel Sullivan acting via her litigation friend the Official Solicitor (OS) did not oppose the application. She stated that in considering the application, the court is faced with balancing P’s right to private life (Article 8) with her mother’s right to freedom of expression (Article 10).  Neither right has precedence over the other, and the court is faced with a fact-sensitive balancing exercise.

Although P has a legitimate and reasonable expectation of privacy in relation to the proceedings, the interference to P’s Article 8 rights to a private life were likely to be limited and there was unlikely to be ‘jigsaw identification’ of P. If P’s identity were to be revealed, there is a hypothetical risk of harm to P but it is unlikely to materialize.  Against that, Heather’s Article 10 rights were being restricted by the current order – and her motive for speaking out was not a self-serving purpose but to create greater understanding of the court, and this is “compelling” and should “carry weight”.  

Heather’s daughter had been asked about the application and (although it seems she did not really understand the meaning of confidentiality), she was “unconcerned”.  Her response was that she trusted her mum and is “okay with it if Mum’s okay with it”.

P’s father 

P’s father (also a party in his own right) stated simply that he wasn’t opposed to Heather’s application either, as long as P’s safety was not compromised.  “Like any parent”, he said, that was his “priority”.

Counsel for the Local Authority (Wokingham Borough Council)

Finally, Counsel for the LA, Verity Bell, set out the local authority’s position, opposing the application, under three headings. 

The principal reason for the local authority’s opposition was protection of P’s Article 8 rights.  She’s a young adult with her whole life ahead of her and once a decision was made to make information about her mother’s role in the Court of Protection public, that decision would have a degree of permanence. Any information that Heather put out in her name, for example on social media, would be there forever.  The subject matter of the proceedings is personal to P: that the court has a role in her life, that she is deprived of her liberty by the state – these are all things that will be on permanent record. Counsel continued by saying that although P might trust her mum now and be content with her mum’s decision now, her feelings might evolve as she grew older. On that primary basis, counsel for the LA stated that the curtailment of P’s Article 8 rights were not outweighed by Heather’s Article 10 rights. 

Two other arguments were that if Heather is able to speak out about her role in a Court of Protection case, then other family members might be identified (despite the fact that they’re still covered by the Transparency Order); and that Heather’s rights are not in the wider public interests (“she’s not seeking to hold the state to account – the benefit accrues only to a small pool of potential families seeking her guidance or support”).  She concluded by stating that P is entitled to expect a degree of privacy and the infringements to her Article 8 rights are not justified or proportionate. 

Judgment

The judge then gave his decision – and ruled in favour of the application. 

He stated that P’s mother wished to tell her story of her COP experience not from an anonymous impersonal position but to be able to say “my name is – ”, and to assist others by physically getting involved in person (not simply anonymously in writing), and “there are a goodly number of people who likely will wish for some assistance”. He said there is a human-interest story that is wholly lacking if someone can’t say “I am who I am and I can assist you if you wish”. There is a legitimate public interest in the Court of Protection.  

It was also very important that there’s no evidence of likely harm to P in the unlikely event that she were actually to be identified. P herself “has the utmost trust in her mother to act in her best interests and I accept that: both mother and father have acted in her best interests in the past and will do so going forward. Neither of them will cause her risk of harm. Why would HW do anything other than seek to protect her daughter from harm? The balance of harm firmly falls down on side of HW.”

The judge said he did not see that there is a need for Heather to be limited to saying that she was simply a “relative”: he is satisfied that the personal element of a “mother” is better:  “Every member of the public likes a personal interest story” –  and “Heather Walton”, as he started to call her, (having referred to her as HW before), is the “mother” of a P in the Court of Protection. There is the ability for her to be able to assist other people going through COP proceedings. She has an Article 10 right to say who she is and a true story adds a very important element. She has a personal wish to assist other people and tell her story. 

The judge then confirmed that he would allow the amendment to the Transparency Order, allowing Heather Walton to be named. 

There was then a discussion about what “undertakings” might be asked of Heather – and this proved quite difficult to sort out (e.g. saying that P’s “private life” was not to be disclosed was felt to be too broad and unenforceable).  It was finally agreed, on the suggestion of Counsel for the OS, that the court order should say – as a recital rather than as an “undertaking” – that Heather would not seek to disclose details of P’s daily routine or care. The judge agreed that this was a sensible, practical and pragmatic way forward. And, after 50 minutes, with those words, the hearing ended. 

I could see that Heather was beaming.  

Reflections

In my opinion, the judge came to a very pragmatic and sensible decision.

To me, it is odd that the only thing a Transparency Order prohibits is a person mentioning that their loved one has been involved in a COP case. 

Heather has obviously found being involved in court proceedings stressful and distressing. Rather than trying to forget about it, she wants to use that experience to help other families and to help educate professionals about what it is like for families. This will provide support for other families and a better understanding of the Court of Protection. I wish her well. 

I also hope this judge’s decision will have implications for other family members who want to tell their Court of Protection story in their own name. 

One final thought. It struck me in this hearing that the OS, acting for P, was not opposing the application. The only party opposing the application was the Local Authority. They seemed to be putting themselves in the position of the OS, and saying they opposed it on P’s behalf. I did find that an interesting position, and I wondered why they considered themselves to know better than P’s own representatives what was best for P.

A note from Heather (P’s mum)

I am thrilled to be able, now, to identify myself as a mum of a disabled young adult who has been through the Court of Protection process. 

Our court journey was not long (5 months in total) and was a very simple case (not everyone agreed about where she should live). It also ended well in terms of a decision being for the right placement for my daughter (in my opinion). And yet it was one of the most isolating and stressful experiences I have been through. 

I knew nothing about the system, I hadn’t chosen to go through the process and I wasn’t financially able to get my own legal representation. For those of us who care for adult children without capacity, the Court of Protection is a bewildering thing. We assume that because we have always cared for them and made decisions for them, that is how it will always be. To be plummeted into court proceedings, where complete strangers who do not know our children will make the decisions is, putting it bluntly, awful. It feels wrong in so many ways. 

During the short 5-month case, we experienced three different judges, a change of social worker, changes in solicitor and counsel for both my daughter and the LA, and a variety of “advocates”, some of whom were spectacularly incompetent. 

A previous counsel for the Official Solicitor came to one of the earlier hearings with wrong information, which was presented as fact, and with her mind already made up before she had listened to any of the arguments. She was adversarial rather than inquisitorial. So, a real mixed bag of professionals! 

My daughter got to the point where she was refusing to speak to anyone about her wishes. 

But we were saved in the end by the solicitor acting for the Official Solicitor, Eleanor Bulmer of Butler & Co Solicitors who showed great sensitivity and managed to skilfully draw my daughter out and get responses from her without her shutting down. And also by the judge, DJ Bridger, who as Amanda notes, was pragmatic and sensible, but also kind and sympathetic to us as parents.

As anyone with disabled children, or parents or siblings lacking capacity in one or more areas will know, it is rarely our relatives that cause the problem. It is the system – the constant bewildering change of professionals, and the lack of understanding that we, their family,  know the person inside out – that causes the stress. The Court of Protection process is like the rest of our lives, only on speed – totally reliant on the knowledge and skill of professionals – some who are much more skilled, knowledgeable and sensitive than others.

I genuinely hope going forward that I can share the journey alongside other parents going through the experience. And also, that I can hope to make professionals more empathetic and understanding regarding the impact on family members. They have a job to do: but for us, it is our life. 

I look forward to working alongside others with the Open Justice Court of Protection Project and would like to pass my heartfelt thanks to Celia Kitzinger, without whose incredible knowledge and understanding of the system I would not have been able to get this result.

A note from Celia Kitzinger

I’ve made – and helped others make – hundreds of court applications for variation or discharge of Transparency Orders.  But this one was special.  

Most of the variations I ask for are to permit naming public bodies (like the Local Authority or the ICB or Trust).  In fact, the original TO used in Heather’s daughter’s hearing prohibited identification of the local authority – and that was the first thing I asked the judge to change (and it was changed without difficulty, as it usually is).   When the variation I’m applying for is to permit identification of a family member, it’s always been after the protected party has died (e.g. the sad case of Ella Lung). Until now. Heather’s daughter is very much alive!

Here’s what the TO looked like after the judge removed the clause prohibiting identification of the Local Authority, but before he ruled that Heather could be identified.  It’s the “standard” form of the Transparency Order.

Here’s how it looks now (we only got the sealed order this week, in early December) – with the clause prohibiting identification of the local authority removed, and “Heather Walton” added as an exception to the clause  preventing identification of the family.  With this small but significant change, Heather is free to share her story.

It took time to achieve this result. Heather first contacted me on 29th November 2023, saying she’d like to make herself available to support other families involved in COP proceedings, and we quickly identified the problem that this wouldn’t be possible with the TO in place. Heather made a formal application to vary the TO on 8th May 2024 which was heard on 30th October 2024 – and although the judge gave an oral decision on the day, it’s taken a further month or so to receive the sealed order. So just about a year from start to finish. But an excellent result and we’re all delighted.

Amanda Hill is a PhD student at the School of Journalism, Media and Culture at Cardiff University. Her research focuses on the Court of Protection, exploring family experiences, media representations and social media activism. She is on LinkedIn (here), and also on X as (@AmandaAPHill) and Bluesky (@AmandaAPHill.bsky.social)

Heather Walton is the mother of a “P” who was involved in Court of Protection proceedings.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She can be contacted through the project email on openjustice@yahoo.com

Where shall P live? And the impact of a hearing on first time observers

By Claire Martin, Laura Eccleston and Jess Wright, 8th December 2024

Claire, a seasoned observer and member of the core team at the Open Justice Court of Protection (OJCOP) Project observed a hearing with two new observers: Laura Eccleston (an Admiral Nurse) and  Jess Wright (student nurse). This was their first time observing a Court of Protection hearing. The three of us were in touch during the hearing via WhatsApp.  Communicating via WhatsApp provides support for access, answers (if we can!) any questions during the hearing, and enables reflection in real time. It is increasingly a service we’re providing through OJCOP for new observers. 

It can be daunting to attend court for the first time on one’s own. Even after locating a hearing to observe, getting the link is not always straightforward. On this occasion we had not received the link quite close to the start time, so Claire emailed the court to enquire further. The clerk was very helpful and told us that the hearing was starting late. But most first-time observers would be reluctant to email the court chasing a link (and of course, it would be better if court communication were such that we were not placed in the position of needing to do that). 

The hearing was on CVP (Cloud Video Platform), which is not easy to navigate. For example the first box you encounter on logging on asks whether you want to join by ‘audio+video’ or as ‘an observer’. Well, we are observers, aren’t we? But no, that would be the wrong box to tick – if you do that it means that no one on the court side can hear or see you and you can’t turn on your mic or camera!  Sometimes this might not matter, but we’ve found in the past that judges and court staff (unaware of the implications of joining as “an observer”) often ask us to switch on our camera and to confirm that we can see and hear the court, and/or that we’ve received the Transparency Order.  On occasion they’ve removed us from the hearing when we’ve not responded (because, if we’ve logged on as “an observer”, we can’t).  So, what we advise everyone now is that they click ‘audio+video’ and later click, ‘guest’. All this is even before you are in the hearing, and sometimes before you have received the Transparency Order. (Later in this blog post, Laura reflects on the impact of reading the Transparency Order: it can be very off-putting for everyone, especially first-time observers.)

We were looking for a hearing about an older person, because we all work in older people’s mental health services, however the listings do not give that level of detail about the person at the centre of the case. So it was the listing of this case, as a “Final Hearing” which drew our attention. Final Hearings can be interesting because they are (often) the culmination of all of the evidence and the judge provides a judgment about the decision being made. This is what happened at this hearing.

This is how the listing appeared in Courtserve/Courtel the Friday before the hearing: 

In turned out that the hearing was about where P should live and (although it wasn’t clear from the outset) we pieced together the information that P has been living in her current home (which we will call Care Home 1) for seven years. She doesn’t like it there and wants to move. Counsel for P (Bethan Harris, via her Accredited Legal Representative) said that there were ‘not a large number of options’. The ICB (Surrey Heartlands Integrated Care Board, represented by Conrad Hallin, who also represented the Local Authority, Surrey County Council) had put forward one specific option and P herself had proposed another. 

This was a final, remote, hearing (COP 14075656) on  Monday 25th November 2024, before DJ Nightingale in Guildford to determine where P will live in future. 

Transparency Matters

We had some helpful correspondence with the court clerk (noted above) assuring us that the link would arrive in time, and informing us that the start time had been delayed by at least half an hour because the judge was conducting a remote (private) judicial visit with P. We were also sent the Transparency Order, which tells us what we cannot report about the case. 

Unfortunately (contrary to guidance from the then-vice-president of the Court of Protection) an opening summary was not provided. We were all totally lost about what was happening. Even though Claire is a seasoned observer in the Court of Protection, she did not know what was happening either, other than that the matter seemed to be about where P should live. P was on the link too, with her sister (who was not a party to proceedings but was invited to address the court). 

Here are some WhatsApp exchanges illustrating the lack of understanding about what was happening in the hearing (The green messages are from Claire: 

It was only (after the hearing) on receiving the very helpful Position Statement from counsel for P, that we learned what are said to be P’s ‘impairments of the mind or brain’ [s.2(1)  MCA 2005] and the history of the case. 

The judge did spend several minutes at the start of the hearing addressing the fact that there were three observers and that we were bound by the TO and that:

“The court has the power to exclude persons if it is in the interests of justice to do so, but the purpose of the injunction is to set out if third parties attend … it makes it clear that 3rd parties who attend a hearing such as this … [reading out TO]

Of course, it is important for us as observers to read and understand the TO – but it is also important for open justice for the wider public to understand what is happening in our courts, otherwise justice is not ‘transparent’. The judge, rightly, explained that observers in court are a potential risk to people’s (Article 8 ) rights to privacy. It would perhaps better support the judicial aspiration for transparency if this were to be balanced with acknowledgement of the public’s right to freedom of information (e.g. a summary) to comply with  Article 10 rights.

Background 

We learned from the Position Statement that P is a woman in her 50s who brought the application (via her ALR) to court in April 2023 under Section 21a of the Mental Capacity Act 2005. She wants to leave Care Home 1, and furthermore Care Home 1 is saying that it can no longer meet P’s needs. 

P (we were told in court) has been able to clearly express her views to the court about her care, what is important to her, and where she wants to live. She was on the video-link with her sister, sitting on her bed in her room and, at times, moving about. 

P has diabetes (we think Type I) and is understandably concerned about her dietary needs being adequately met. She experienced a diabetic coma in 2005, and lived with her mother until 2017, since which she has lived in Care Home 1. 

During these proceedings, P has been assessed by an expert consultant forensic psychiatrist (Dr O’Donovan) who has given P diagnoses of ‘delusional disorder in the context of post-traumatic stress disorder (PTSD) and significant health anxiety’. She reported that ‘these mental health conditions have a very significant impact on [P’s] behaviour and level of functioning’. We assume that it is these diagnoses which underpin the determination that P lacks the capacity to make decisions about where she lives and what care she receives. Dr O’Donovan’s view was that P fully understands the court process, can retain the information about the proceedings and communicate her views, but that she is not able to weigh up the necessary information in order to make decisions (for litigation, residence and care needs).

The Position Statement also describes P’s current view about her mental health diagnoses: she declines any and all treatment for her mental health and will not engage with the Community Mental Health Team (CMHT). Dr O’Donovan recommended a home for P that could ‘support adults with chronic and enduring mental health needs’. 

Where shall P live?

The ICB (Integrated Care Board – formerly CCG, Clinical Commissioning Group) has proposed one particular placement, which we will call Care Home 2. 

Care Home 2 is a specialised community hospital which provides acute and rehabilitation service for people with mental health needs. We learned that it has a ‘full multi-disciplinary team’ comprising doctors, nurses, psychologists, occupational therapists and dieticians. There are ‘step-down’ apartments on site and the aim would be to enable P to move into one of these semi-independent apartments (which have 24/7 support) in time. 

P does not like the idea of living in a ‘hospital’ setting and has herself approached a care home (which we will call Care Home 3). This care home is registered for EMI (Elderly Mentally Infirm). P knows the manager there, who supported her when she lived elsewhere. The court was told that P’s mental health needs, were she to move to Care Home 3, would be provided by the Community Mental Health Team. There is no current vacancy at Care Home 3. 

It was clear that all parties viewed Care Home 2 as the best place for her. P herself did not agree (but she is represented via her ALR, who makes submissions in what they think are P’s ‘best interests’, which might not – and in this case, did not – accord with P’s own views: see https://www.mentalcapacitylawandpolicy.org.uk/litigation-friend-or-foe/).

Counsel for P: The magnetic factor in this case […] on behalf of the ALR for P is where P’s needs would be best met, and where all P’s needs can be best met. The court has received information about the TYPE of place that Care Home 2 is, and the holistic provision that Care Home 2 makes – a range of professionals, who would be able to meet P’s needs across the board. [Counsel’s emphasis)

Counsel for the ICB and LA: They can fully meet her needs across the board, it has a good CQC rating, a full MDT to help her, a range of activities that she can participate in if she wishes to do so. They have great expertise in helping people with complex medical conditions – diabetes … which she has. There is no formal 1:1 requirement, but it can be provided if necessary. [There are] a lot of advantages to this placement, and although there are not a lot of options, this is a good option. She’s keen to move on from where she is now, this is a good and constructive option. […] The point is that it’s a specialist health placement – specialist in diabetes […] it needs to be carefully managed. There are specialists in the management of diabetes, so it’s not just about dieticians but about diabetes. The intention is for a transition plan to include [P] in considering her dietary requirements with the specialists who are in place. … to make sure she’s on-board with the proposals. 

The judge raised several of the concerns that P had spoken to her about: information about the care home, how the transition would be done (she’d previously not had control over her possessions and was keen to ensure this would not happen again), and the environment itself:

Judge: P thinks it will be noisy and she’s a quiet private person

Counsel for the ICB/LA: I can’t see anything that would suggest that this will be a noisy environment, but if you want anything beyond the photographs I will need to ask [the clinical manager from Continuing Health Care].

Social Worker: I can’t add anything to the building or noise – I haven’t visited. [P’s] sister has visited …. I can only see what’s on the brochure. 

Judge [to sister]: I don’t want to pressure you – do you have anything to add?

Sister: I was explaining to [P] that the room intended for her is on the end of a block, a semi-detached [block]. When I visited, there was a common room and music, but not noisy. The venue is spacious and there is a garden …. a dining room, quiet areas … different spaces available – a female-only floor where [P] would be, no noise when I was there. Only 14 residents at the time, but it has capacity for more. The staffing ratio is higher … certainly I wasn’t aware – it has a nice homely atmosphere, someone was leaving and celebrating … a positive atmosphere when I spoke to staff. 

The judge gave an ex-tempore (oral) judgement, which authorised a move to Care Home 2 – the one that all, including (we were told) all of P’s family, supported. But where P herself does not want to go. 

The judge said that one of P’s concerns is that it is a hospital, and that Counsel for the ICB/LA had ‘explained that it’s not a hospital in a formal sense, but a community hospital with an MDT on site’. She ended her judgment by saying: “Care Home 2 offers the best opportunity for [P] to be cared for in a setting for all of her needs to be met holistically”

Reflections

As we listened to the hearing and began to understand that this was a final hearing to make what seemed, by the end, an inevitable judgment , we realised that P as a person had not been discussed at the hearing at all. Save for saying she was a ‘private’ person and that she does not accept any suggestion of mental health difficulties, we didn’t learn much about her. We know nothing about her likes and dislikes and the sort of place that she would prefer (save again for the one care home that she had approached herself, which had a private – not shared, like Care Home 2 – shower, and that P knew the manager). 

There was a suggestion that, once she was there, she would see that Care Home 2 was a good choice for her, be more likely to engage with professionals (including mental health professionals) and be able to develop her independence (which she was said to want to do). However, it was concerning to us that there was no evidence presented (orally, in the course of this hearing) to support this contention. 

However, as observers, we only see and hear a snapshot of the huge amount of work behind a court hearing, and it is likely that the court had much more of an understanding about these things than we did. 

Nevertheless, what we did see, at times, during the hearing was P strongly and visually expressing her views about what she heard. 

Laura 

I noticed how distressing it was for P as she was getting up and down and throwing her arms open, throughout the hearing, when arguments were being made for different places to those she might have wanted for herself. At the times I noticed this, it was at points where I also felt very confused with what was being said. I also questioned if more had been considered around her physical health conditions rather than the focus being on mental health. One of the questions this made me think of, was how some physical health conditions that people have managed for a long time don’t fit to new routines of different establishments and can made it difficult for people to function as they once did. Often, when people with diabetes are in ‘hospital’ settings, we get people to change lifestyle choices to fit the needs of the hospital, rather than look at what they can do in the community. 

At the start of the hearing P had a sheet wrapped around her and was walking around the room. One of the things that I felt was how undignified this was for her, and how everyone could see the pad she was wearing when she was getting into the bed, as she was wearing no pants. Why wasn’t this noticed by the court? 

My other reflections are about the process of attending the hearing itself. As a first-time observer, initially when I read through the Transparency Order, I was overwhelmed by the document. The terminology was difficult to follow, in parts. I was also taken aback by the statement about the injunction and how it stated a person may be found guilty of contempt of court and may be sent to prison, fined or have their assets seized. Had I not been supported to access the hearing I would not have gone any further for fear that I would do something wrong. Without support from Claire, I was also unsure about doing the blog as the Transparency Order would have put me off saying the people’s names (barristers and judge) and even identifying the person at the centre of the case as female.   

At the beginning of the hearing, the Transparency Order was highlighted by the judge. This was daunting and made me reconsider whether I should be attending.

Following the judge reading this we heard from the barristers. It was difficult to follow who was proposing what and on behalf of whom.

After attending, I felt I was able to recognise in more detail how the COP works. I also considered how difficult it can be for people who are waiting for life-changing decisions to be made. This has made me consider the importance of how we look at the wider picture for people and how we can improve their care.  As an Admiral Nurse, I work with family carers of people with dementia and I have experience, as a Community Psychiatric Nurse, of people detained under the Mental Health Act and of Mental Health Tribunals. 

My interest in observing the COP hearing was stirred when I attended a talk at work about fluctuating mental capacity in dementia and I learnt about the OJCOP project. 

The case left me with the following questions to reflect upon:

The difference between the Mental Health Act and Mental Capacity Act. The COP did make me consider the difference between the MCA and MHA and how different the timescales can be. Things seem to be more regulated and quicker in Mental Health Act detention and tribunals. The difference I have seen is how everyone will be reviewed under the Mental Health Act after a period of time if they have not made an appeal. Rights are provided to people on a regular basis with guidance around this. I can’t say that I have ever come across people having their rights explained around how they can challenge MCA 2005 decisions. I have so many times seen people being told “They’re on a DOLs”, and that’s that. I think that the Mental Capacity Act can be used as a least restrictive option to move someone to a different location. This often makes me wonder, if the Mental Health Act was used, would the person have more rights around being able to challenge.

How do we define what is a least restrictive option? Through the hearing they discussed what was available. When hearing this I considered how this varied between local authorities and how the outcome could be different in different locations. 

Submitted evidence: It was unclear through the hearing if services other than mental health services had been consulted. This led me to think about the importance of considering how all aspects of care should be looked at in detail to avoid diagnostic overshadowing.

Jess

Jess is a student nurse in the throes of her dissertation. Her immediate, post-hearing reflections are captured powerfully in these WhatsApp messages sent to Claire and Laura in the evening after the hearing was finished.

(The “good read” above is this blog about a 91-year-old woman who wanted to return home to live with her son.)

(In that last message, Jess is referring to feeling upset after the hearing, as she was about to leave work for home. She sent this message after arriving at home the same evening.)

What is clear from Jess’ statements above is how observing a Court of Protection hearing makes (what feel like) cold, legal decisions about people’s lives ‘hit’ you on a personal level. Watching P herself ‘sat and people discussing your life’ helps to develop a level of empathy that reading cases, or working as a professional in your role, don’t necessarily facilitate in the same way. 

We hope that P can find a way to feel comfortable in her new home and that, even though others think it’s the best place for her, that her own feelings and views are considered on an ongoing basis in future, whatever they may be.

Claire Martin is a Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core team of the Open Justice Court of Protection Project and has published dozens of blog posts for the Project about hearings she’s observed (e.g. here and here). She is on X as @DocCMartin and on BlueSky as @doccmartin.bsky.social

Laura Eccleston is Community Admiral Nurse Lead at Gateshead Health Foundation Trust. 

Jess Wright is a student nurse, currently at Gateshead Health NHS Trust.

 

Application to appeal against judgment authorising withdrawal of life-sustaining treatment: Re XY

By Jenny Kitzinger, 4th December 2024

The Court of Appeal hearing I observed on the 26th November 2024 concerned an application for permission to appeal a Court of Protection judgment. 

I’d watched the original Court of Protection hearing (COP 20002405) in early November and blogged about it (“Withdrawing life-sustaining treatment: Faith and Science”). The judgment, handed down on 11th November – so just two weeks before the Court of Appeal hearing – authorised withdrawal of life-sustaining treatment from ‘XY’, a woman in a Prolonged Disorder of Consciousness.

In the course of the Court of Protection hearing, clinicians gave clear and unanimous evidence about XY’s catastrophic brain injuries, her lack of awareness and why there was no potential for any recovery: and they explained why they thought it was in her best interests for life-sustaining treatment to stop. Her family and friends gave clear and consistent evidence about why they believed that XY was aware of their presence, why they thought her condition might improve and why they thought life-sustaining treatment should continue – including, centrally, because that is what XY would have chosen for herself given her strong values and religious faith.

The subsequent judgment, by Mrs Justice Arbuthnot, authorised the withdrawal of life-sustaining treatment on the basis that, due to severe and extensive brain damage, continuing treatment was not in XY’s best interests. 

The application for permission to appeal was made by XY’s daughter. A stay had been placed on the withdrawal of treatment until the application could be heard.

I was particularly interested in how the appeal might be handled because I also have personal experience of representing a family member’s values and beliefs in relation to treatment decisions about her – and, like the family in this case, I was over-ruled. I return to this element of the hearing in my personal reflections at the end of the blog.

The parties, representatives and judges in the Court of Appeal

The daughter of XY was no longer represented by the team (funded by legal aid) that had acted for her in the Court of Protection. Instead, she had brought the application as a litigant in person. Shortly before the hearing, she’d gained pro bono (i.e. free) representation from Mr George Thomas (who was thanked by the judge for stepping in at very short notice). 

The other parties in the case were represented by the same barristers who had acted in the Court of Protection: King’s College Hospital NHS foundation Trust, where XY was receiving treatment, was represented by Mr Michael Mylonas KC. The patient herself was represented (via her litigation friend, the Official Solicitor) by Ms Sophia Roper KC. 

The judges in the Court of Appeal were Lord Justice Baker and Lord Justice Phillips. 

Access and transparency 

Observing a Court of Appeal [CoA] hearing is very straightforward compared to the Court of Protection if – as was the case for this one – it is live-streamed.

Many Court of Appeal hearings are clearly listed several days in advance, live streamed and recorded (see https://www.judiciary.uk/the-court-of-appeal-civil-division-live-streaming-of-court-hearings/). This means there is no need to email to ask for a link based on listings that are only available the night before and then anxiously await the link being sent. Also, you don’t have frantically to try to capture every word from a live hearing, you can concentrate on following the arguments, safe in the knowledge you can always go back to replay sections later to pick up certain details or quotes.

The main problem for transparency in relation to this case was that I had not yet seen the judgment. It had been handed down on 11th November 2024 but was not published, and not available to the public, by the time of the appeal court hearing. I understand that this was due to workload pressures on Mrs Justice Arbuthnot, who made the original COP judgment. Whatever the reason, it is challenging to follow arguments about why a judgment is (or isn’t) wrong without having read that judgment or being able to refer to it during the hearing.

The barristers had clearly made efforts to see if an anonymised version of the judgment might be available before the appeal hearing and Lord Justice Baker checked at the start of the hearing to ensure that redacted versions of the skeleton arguments were available to observers (thanks to Celia Kitzinger for asking for these and the barristers for making sure these were redacted and shared under very tight time pressures). The judgment from the Court of Protection was also published the day following the Court of Appeal hearing, so I have been able to read it prior to writing this blog.

The hearing

To be successful on appeal, an applicant needs to demonstrate that the original decision was wrong or unjust because of a serious procedural error or an error in applying or interpreting the law. Permission to appeal will only be granted if there is a good chance of the appeal succeeding, or there is some other compelling reason to hear the appeal.

The hearing about this application for permission to appeal lasted almost 3 hours. You can view the video-recording of the whole appeal on the Court of Appeal video archive page.  Some parts of it felt like a re-presentation of some of the arguments presented in the Court of Protection – so even if that is your main interest, rather than the workings of the Court of Appeal, I’d recommend listening to the recording for that reason alone.

Lord Justice Baker opened the hearing by asking for clarity about who was in court and welcoming the family members present (XY’s daughter, grandson and aunt – mostly seated back left of the court and off-screen). He explained that the Transparency Order from the Court of Protection does not apply in the Court of Appeal so new reporting restrictions would be ordered and he also (with apologies to the family for it sounding impersonal) clarified that the woman at the centre of this case would be referred to as XY for the purposes of this hearing. ‘XY’, it was made clear, was not just an anonymous set of initials – she was a unique individual with her own values and faith, a much-loved mother and grandmother, a popular member of her local community and with a large extended family in Jamaica.

The daughter’s position 

Counsel on behalf of XY’s daughter (the applicant), spoke first, and his submission to the court took up the majority of time (almost two thirds of the hearing). He started by outlining the grounds for permission to appeal and it soon became clear that XY’s daughter (originally acting as litigant in person, i.e.  without representation) had submitted a skeleton argument broader in its scope than the issues Mr Thomas wanted to focus on as grounds of appeal. For example, the daughter’s skeleton argument had apparently argued that there’d been procedural flaws in the CoP hearing because no independent neurological opinion was selected by, or with the satisfaction of, the appellant or her family. In fact, a neuro-critical care specialist, Dr Bell, had been commissioned by the daughter’s solicitors, but had arrived at the same conclusion as all the other clinical experts about XY’s level of consciousness, and took the same position as they did that it was in her best interests to have life-sustaining treatment stopped.

Once Mr Thomas had become involved, he had submitted an additional supplementary skeleton argument focusing on just two grounds of appeal relating to material errors in how the judge made her best interests assessment. First, the judge was not entitled to conclude that XY was unresponsive, given the evidence of friends and family that she was responding to their presence. Second, the judge failed to give sufficient weight to the significant amount of undisputed evidence from friends and family that XY would not want clinically assisted nutrition and hydration to be withdrawn. Although Mr Thomas touched on some other points (such as the issue of the independent expert), it was these two grounds of appeal that formed the basis of his submissions – and I use them to structure my summary of the submissions and my subsequent discussion.

Family evidence of responsiveness: In her judgment Mrs Justice Arbuthnot found as follows:

107 .”I find that XY does not track with her eyes nor does she respond to voices or commands to squeeze their hands. I can understand how a family who wish that this very much loved family member should recover are misinterpreting what they see. They see responses to their care rather than the reflexes controlled by the brain stem that the medical specialists identify. That is not to say that at some level XY is getting comfort from their touch, but it is not a conscious sensation.” 

and

117. Her family and friends visit her daily but she gets no enjoyment from their frequent visits. The evidence shows she does not hear her family when they visit or even knows they are there. 

Representing XY’s daughter, Mr Thomas took issue with such statements, arguing that the judge was wrong to dismiss the evidence of responsiveness presented by the family. He highlighted how family and friends visited XY often and sat with her for long periods of time; they had a long-term intimacy with XY that the nurses lacked and, unlike busy hospital staff, they had time to talk to, and pray with, her. He pointed out that six different witnesses had submitted written statements reporting having directly witnessed XY’s responses. He argued that, had the judge assessed the evidence in a properly balanced way, a different best interests decision would have been reached. 

Consideration of what XY would have wanted: In her judgment, Mrs Justice Arbuthnot found as follows in relation to what XY would have wanted:

111. XY has never stated her views about clinically assisted nutrition and hydration or on sustaining her life artificially in the circumstances where she is totally dependent on others and cannot function in any of the ways she used to, where she is not aware even that her family is visiting her. 

112. Despite not being in the best of health, she never had that sort of conversation with her daughter (or anyone else). We do not know how she would feel in the current situation that she finds herself in. We do not know what she would feel about the enormous pressure being placed on her family and friends of this very long drawn out, tragic situation. 

113. She worked in a hospital and is likely to have come across death and serious illness there but we do not know how she would feel about the continued treatment when the specialists and experts say it is futile. She was a woman of faith, but I question whether this loving mother and grandmother would have wanted the burden of the treatment to continue. She may have wanted her family to be relieved of the long drawn out pressure they are under. 

114. I appreciate the family know her best, particularly XZ [her daughter], but I am not convinced that this matriarch who always put her family first would have wanted them to continue going through what they have been.

Counsel for the daughter was critical of Mrs Justice Arbuthnot’s summary concerning XY’s views. It was, he said, wrong to say “We do not know how she would feel in the current situation” – there was a great deal of strong evidence that XY would, in fact, have wanted life-sustaining treatment to be continued. He quoted a statement from XY’s daughter that given XY had ‘died and been brought back to life’ (i.e. the one-hour plus ‘down time’ while paramedics tried to resuscitate her), her mother would believe God did this for a reason and she was here for a purpose.

He also highlighted that her religious beliefs were a key part of who XY was as a person and pointed to the importance of upholding her rights under Article 9 of the European Convention on Human Rights – which guarantees the right to freedom of thought, conscience, and religion. XY believed in the sanctity of life and in miracles and, crucially, that it is for God rather than medical staff to determine when someone’s life should come to an end.

He referenced case law supporting the ‘magnetic importance’ of P’s wishes where these can be determined with a high degree of certainty (whether those wishes are to have treatment continued or discontinued). He also highlighted case law that, where there is compelling evidence of a person’s wishes, treatment may be continued even if based on belief in miracles and even if clinicians view it as futile from a medical perspective. A key authority referred was the TG case (Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust v TG & Anor [2019] EWCOP 21’)

Based on the evidence presented to the court, he said, there was no doubt or dispute about what XY’s wishes would have been, and one certainly knew ‘on the balance of probabilities’ what she would have wanted in her current situation. It may not have changed the best interests decision by the court, but the failure to give sufficient weight to this evidence was a ‘fundamental flaw’ in the judge’s approach to the decision she made. 

The Trust’s position 

Mr Mylonas as Counsel for the Trust spoke next – and the judge invited him to focus on the two main points addressed by Counsel for the daughter (responsiveness and account taken of XY’s views). 

The Trust took the position that there was no realistic prospect of the appeal succeeding and permission to appeal should not be granted. 

On family evidence of responsiveness: Counsel for the Trust reiterated the strong medical evidence and drew attention to a statement by Dr Bell that XY is on the lowest point of the Prolonged Disorder of Consciousness spectrum (i.e. what would have historically been called a ‘Persistent Vegetative State’). He referred to the statement from Dr Bell that the suggestion that XY was responding would be outside all acceptable medical knowledge. The CoP judgment had drawn attention to these points and, Counsel for the Trust said, “It is a fundamental basis on which any assessment of Best Interests must unfortunately lie, notwithstanding the family’s sincere hopes and beliefs that there is some meaningful response…”. He informed the court that the nursing care in ICU was a ratio of 1:1 (information that had been sought by email during the hearing) and highlighted the fact that these were specialist nurses who would know how to distinguish a reflexive from a purposive response. Addressing a question the judge had raised about WHIM and SMART testing (two tools often used in assessing patients in Prolonged Disorders of Consciousness), Counsel for the Trust explained that such tests were not typically used in ICU but, “with XY, there was CRS, Coma Recovery Scale, testing carried out which was conducted daily….that has showed a deteriorating condition with no improvements” although “regrettably those documents were not in the documents that were before Her Ladyship”. 

On what XY would have wanted: Counsel for the Trust submitted that there were some overstatements by Counsel for XY’s daughter of what could be derived from XY’s past conversation because, as the judge properly identified, the issue had never been discussed with XY. He contrasted this with the specific statements reportedly made in the TG case – albeit unfortunately not quoted in the TG judgment. He drew attention to statements from family about XY being a fighter and about her love of life – a life to which she could, in fact, never return according to all the medical evidence. In response to submissions on behalf of the daughter that she would have wanted life at any cost, Counsel for the Trust concluded: 

“She would never have envisaged this cost…this level of intervention and invasiveness would not be in [her] consciousness or contemplation…she undoubtedly did say, and would have said, to her daughter and those around her that she valued life, because of what it gave her: the opportunity to play with her grandchildren, her children and engage with all those around her. She can never do that. And the cost of her subsistence now – because it’s not even an existence at the level it currently is – that is, we say, far too grave a weight for her to bear…” [2hrs 23mins into the recorded version of the hearing]

The Official Solicitor’s position

The Official Solicitor acting as XY’s litigation friend was the last barrister to address the court. Ms Roper KC argued, on behalf of XY herself, that permission to appeal should be refused. 

On family evidence of responsiveness: She referenced the medical evidence about the condition of XY’s brain as already outlined by Counsel for the Trust and, like him, reiterated that what the family reported about responsiveness would be – as one of the medical experts had said – ‘outside all accepted medical knowledge’. Doctors, she said, were not challenging what the family say they saw: their point was that the movements they saw did not indicate awareness or responsiveness, as the family believed. She drew attention to an attendance note from an agent the OS instructed to visit XY: it confirmed that nursing staff caring for XY also (like the doctors) saw XY’s movements as reflexes not volitional responses. Nurses who witnessed XY’s movements during family visits said the same thing. 

On what XY would have wanted: Ms Roper acknowledged the very clear evidence that XY was a deeply religious woman. The OS position was that Mrs Justice Arbuthnot had meticulously set out the family evidence but was not persuaded that this evidence allowed one to infer that XY would have wanted to remain on intensive care for the rest of her life. The family witnesses had not engaged with that outcome, she said, because they retained a belief that XY was responding to them and that there was potential for recovery.

Re the TG case (used as an authority by Counsel for XY’s daughter), the OS pointed out  that TG had made very specific statements and that TG’s circumstances were different from XY’s circumstances in that the application was made very soon after injury (just two months compared with six months in this case) and also that it was possible for TG to leave intensive care and be transferred to a nursing home and a life not exposed to continuous invasive treatment (which was not medically achievable for XY).

Counsel submitted that the judge had considered the family evidence about responsiveness and about what XY would have wanted, ‘but ultimately did not agree’ with what the family thought on either matter. And the judge was entitled to be of this view on the evidence.

The hearing concluded with submissions about what would happen if the court refused the application to appeal – and there was a plan, were that to be the case, to give some time (5 days) for the family to engage in discussion of end-of-life care (as they had not yet felt able to do this) and for withdrawal to take place after that. (I worried about this being perilously close to Christmas.)

Finally, Mr Thomas reiterated XY’s strongly held religious views and that: “those views, I would submit, are far more likely to persist, and far less likely to change, based on the individual circumstances one finds oneself in”.

The judge ended the hearing by thanking the applicant (XY’s daughter) for her work in bringing the case to court – reflecting the whole framing of the ethos of the court as co-operative and respectful.

The Court of Appeal judgment

Permission to appeal was refused.

On the first main grounds of appeal (that the judge had not given sufficient weight to family evidence of responsiveness), Lord Justice Baker stated in the judgment that:

“It may be that [the daughter] was not cross-examined on her observations. But the challenge came from the unanimous evidence from the clinical and nursing staff that they had seen nothing to indicate any awareness in XY, and from the clinical and expert evidence that the evidence from CT scans and EEG recordings was indicative of a PDOC  [Prolonged Disorder of Consciousness] at the lowest end of the spectrum.”

The judgment goes on to state:

47. … the judge was plainly fully aware of the extent of the evidence from family members about XY’s responsiveness. ….

48. The judge gave conspicuously careful attention to all of the evidence about this issue [of responsiveness]. Her decision to prefer the evidence of the clinical and nursing staff about the extent of XY’s responsiveness, and the interpretation of the evidence advanced by Dr Bell and Professor Wade, was plainly open to her on the evidence. There is no real prospect of the Court of Appeal finding that she was wrong to reach that conclusion. 

On the second main ground of appeal (that the judge had not given sufficient weight to family evidence as to what XY would have wanted), the judgment does not address the issue of whether family/friends were cross-examined and had relevant questions put to them, but says:

52: … [Mrs Justice Arbuthnot’s] evaluation of the evidence of XY’s wishes and feelings, beliefs and values, was conducted in accordance with s.4(6) and (7) of the [Mental Capacity] Act. But important though her beliefs and values undoubtedly were, they were one factor in the overall evaluation of best interests. They had to be considered in the context of the totality of the evidence. 

53. In this case, the magnetic factor in the judge’s evaluation was the evidence about XY’s medical condition…

54. The judge was obliged to consider the family’s clear evidence about XY’s faith in the context of her present circumstances which, as Mr Mylonas submitted on behalf of the Trust, she could never have envisaged. As Ms Roper submitted for the Official Solicitor, the fact that she had a religious faith, and believed that it is God’s choice when someone lives and when someone dies, does not lead to an inference that she would have wanted to continue treatment in these circumstances. There is also force in Ms Roper’s further submission that the family’s views about what XY would have wanted are situated in their belief, contrary to all the medical evidence accepted by the judge, that there is a prospect of recovery. 

55. In those circumstances, there is no real prospect of the Court of Appeal concluding that the judge erred in her approach to XY’s beliefs and values and wishes and feelings.

The CoA judgment goes on to state:

…I have no doubt that the judge took their strong views about XY’s wishes and feelings into account, as she was required to do under s.4(7). But she was entitled to entertain doubts about what XY would have really wanted in these terrible circumstances, and equally entitled to conclude that the family’s evidence about her wishes and feelings was outweighed in the best interests analysis by other factors, in particular her very serious and deteriorating medical condition. As she said in her conclusion, “the futility of continuing further treatment and the increasing deterioration of XY’s brain outweigh the family’s views and what they consider might have been XY’s views in the circumstances.”

The full judgment can be read here: Re XY (withdrawal of treatment) [2024] EWCA Civ 1466

Reflections: what would P want? And who knows?

The place of a person’s own wishes in relation to medical treatment was central to this case.

The Mental Capacity Act 2005 is the key statute here. A person with capacity has the right to refuse or consent to any treatment on offer (they cannot demand treatments). They can also document refusals in advance in a legally binding ‘Advance Decision to Refuse Treatment [ADRT] (although very few people do this – for how to do so, see the ‘Compassion in Dying’ website). 

Once someone has lost capacity to refuse or consent to a treatment then (if there is no ADRT) the choice between available treatments becomes a best interests decision. What someone would have wanted then becomes only one component in that decision – and, of course, what they would have wanted may itself be subject to challenge, as demonstrated in this case.

Issues that played out in this Court of Appeal hearing in a variety of intersecting ways revolved around questions such as: 

  • What can one infer from what one understands of someone’s values and who can do so most accurately?
  • How might someone’s values or wishes change in specific circumstances, and how does that relate to the nature of those circumstances and the nature of their values (or beliefs, wishes, feelings)?
  • Who is the ‘someone’ whose wishes are considered (the ‘person before’ or ‘person after’ injury?)
  • How much weight should a person’s prior wishes be given in a best interests decision in relation to other factors? 
  • and anyway – in the case of wanting (as opposed to not wanting) treatment “we cannot always have what we want” (Lady Hale in Aintree) – even if one has capacity to make the decision. 

There is a large academic literature that explores some of these issues – ranging from surveys of doctors’ or families’ accuracy in predicting a person’s treatment preferences, or how people’s views shift when faced with severe disability, right the way through to philosophical debates about personhood and autonomy. Readers of this blog will no doubt have their own personal views about the proper answers to these questions as they reflect on their own values and wishes, and those of people close to them.

I’ve written about some of these debates previously e.g. in relation to the Paul Briggs’ case (‘When ‘Sanctity of Life’ and ‘Self-Determination’ clash”). My aim in the final paragraphs of this blog post is different. I want to explore the implications for family and friends involved in best interests decision-making about serious medical treatment.

What do families experience when they have sought to promote what they believe their family member would want – and when that is reinterpreted through the lens of a formal best interests process and/or over-ruled?

Of course, families are not inevitably the best people to advocate for a patient – they may not know what the person would want, or (if they do) they may not wish to advocate for it; they may be distracted by family conflict or trauma or simply overwhelmed by their own needs. But sometimes families are exactly the right people to promote ‘P’s voice’ – and that is the strong sense I got with this family.

The idea of what their mother, niece or sister would have wanted (in line with her, and their own, religious faith) was clearly a central guiding light – and, for them, a key determinate of the right way forward. They had conveyed a very strong sense of what those wishes would have been during the Court of Protection hearing, and demonstrated a remarkable resilience in the face of any challenge from expert evidence about XY’s condition and prognosis (which I suspect, XY would have demonstrated too).

I felt huge empathy for this family, and it resonated with my own experience after my sister, Polly Kitzinger, suffered catastrophic brain injuries back in 2009. It resonated even though, on the face of it, the experience of this family and mine might be thought to be diametrically opposed.

For a start, XY and Polly were very different people: XY was a woman of faith, Polly was an atheist; XY believed in the sanctity of life, Polly did not; XY believed in miracles, Polly did not; XY believed in submitting to the will of God whereas Polly insisted on her own will determining all her choices and what happened to her body, her life, her death. 

And as families, XY’s family and mine argued for different outcomes: XY’s family fought to have XY’s life-sustaining treatment continued, whereas we fought to try to have treatment discontinued. I wrote about this a couple of years after Polly’s injury (https://www.thehastingscenter.org/m-polly-and-the-right-to-die/) and gave an interview to the BBC in 2018 about the ongoing aftermath. (I know lawyers and judges will dislike the word “fought” in this paragraph – but that is how it often feels to families, despite the purportedly ‘non-adversarial’ approach of the Court of Protection.)

What XY’s family and my own family share is that both were committed to trying to represent ‘what the patient would have wanted’. Both they and we had a strong sense we knew what that was. Both XY’s family and mine, to a greater or lesser extent, shared some of the patient’s core values – though, personally, I found Polly’s emphasis on autonomy, choice and control a little extreme! 

Relating then to my own experience, I wondered how this family, and the community of friends around XY, experienced the formal best interests processes in the hospital and in the Court of Protection; how they felt about the arguments in the CoP judgment, and how they experienced their encounter with the Court of Appeal.

In my original blog about the CoP hearing in early November I wrote that: “everyone in court was careful first to acknowledge XY as the individual at the centre of the case and make it clear that her family and friends had been, and would be, heard”. 

In rounding off my summary of what family and friends had said I wrote: “The clinicians listening in court, and the judge, could have been left in little doubt about the values and beliefs that informed XY’s approach to life – and what those who knew and loved her believed to be the right way forward.”

The family were treated respectfully and sensitively in the Court of Protection. I suspect they did leave court feeling ‘heard’. There may have been an element of ‘therapeutic jurisprudence’ in the experience. 

But I wonder how it felt to family and friends when the Official Solicitor, who is charged with responsibility for representing XY, took a position that (the family believe) is diametrically opposed to what XY would want. I wonder too whether the judgment came as a shock – not just the outcome, but whether parts of the framing of the judgment felt particularly egregious.

Suggestions in the judgment that their discussions with XY had not been specific enough, or that she might (had she been able to) change her mind when faced with the realities of her medical situation (as defined by the medical experts) might well feel very disrespectful now – both to their evidence and to the strength of XY’s own faith. 

They may have been distressed by the fact that the judge extrapolated from what they said to come to a different conclusion: for example, rather than valuing being a ‘comfort’ to her family (as testified to the court by XY’s close friend) the judge speculated that XY might want to be allowed to die so that her family would be ‘relieved of the long drawn out pressure they are under’. This might seem like twisting their own words against them or speculation on matters which they had not been invited to engage with in the hearing. There was also very little challenge or cross-questioning of the family – which, at the time, seemed a kindness, but in retrospect was maybe a problem, as they may have felt they had no opportunity to rebut challenges to their evidence.

Knowing my own sister’s values and beliefs (although these were not religious), I felt fully able to infer what Polly would have wanted, despite never having discussed her precise medical wishes if she were to experience severe brain injury. I would have welcomed the opportunity to specify what I knew, and how I knew (under cross-questioning if necessary). I also agree with the submissions on behalf of XY’s daughter that someone’s core values, embedded not just in what they say but in the way they live their life, “are far more likely to persist and far less likely to change, based on the individual circumstances one finds oneself in”.

Family and friends may, of course, be wrong in what they infer, but at least they have years of context for their inferences. It may be hard to believe that the proposed alternative inferences made by judges are likely to be more accurate (even if those take into account a medical ‘reality’ that the family themselves refuse to accept).

A person’s wishes, what they want to happen, are not determinative in best interests decision-making. There are many COP judgments in which it is accepted that the protected party wants one thing (to go home, to have sex with someone, to have contact with family, to use the internet) that it is not in their “best interests” to do. And so, the judge makes a decision contrary to what that person wants. 

I wonder whether judgments which go against what a family believe to be what someone would have wanted are more painful to hear when it seems that the judge has not fully believed a family’s account of that person’s wishes and what that means for the present circumstances. Could this leave family members feeling they could – should – have done more to explain and persuade and provide evidence, so that the judge could really understand the person?

An alternative judicial strategy would be simply to make a best interests decision to over-ride what the judge accepts the person would have wanted (in circumstances of course, where they do accept it!). That might look like a naked exercise of judicial power (and responsibility) – and it is. But, given the ‘magnetic factor’ in the judge’s best interests evaluation in this case was XY’s medical condition and the futility of intervention –perhaps this would feel less undermining, than (in effect) refusing a family’s lifetime’s knowledge and experience of P’s fundament values and beliefs. 

That brings me full circle to the point I made in my blog about the original Court of Protection hearing: perhaps, given the clinical realities, doctors should simply have said that life-sustaining treatment was no longer an available option.

Jenny Kitzinger is co-director of the Coma & Disorders of Consciousness Research Centre, and Emeritus Professor at Cardiff University. She has developed an online training course on law and ethics around PDoC and is on X and BlueSky as @JennyKitzinger 

“Bureaucracy blots out the sun”: Telling Ella Lung’s story

By Richard Lung (with Celia Kitzinger), 1st December 2024

Sometimes holding on to me to keep steady, Ella walked out of the care home lounge into the entrance hall. To staff: “I want to go home to my son. Why can’t I go home? – It’s a free country!”  (Richard)

Ella Lung, in her nineties and suffering from dementia, was deprived of her liberty in a care home for just over two years: from 22nd November 2019 until shortly before her death, aged 96, on 16th December 2021.  

In the Court of Protection proceedings eventually brought on Ella’s behalf by the Official Solicitor, Ella and her son Richard feature as “EL” and “RL” (EL v North Yorkshire County Council & RL, COP 13539692).  There is no published judgment.  

The only published record of this family’s experience of how they were treated by health and social services, and by the court, is Richard’s detailed, impassioned, meticulous account of his mother’s life, and death, across fourteen journals in a series called “Family Splitting” published online (see Appendix). The journals document interactions between Ella and Richard during the period when, in Richard’s words, “Ella suffered over two years of unjust and anguished imprisonment”.   They tell an important story. 

During the course of the court proceedings, the local authority legal department sent Richard a letter saying that his writing  breached the “Transparency Order”: in the usual terms of the ‘standard’ order, he was not allowed to identify his mother as a protected party in Court of Protection proceedings. The Official Solicitor opined that the journals were an interference with Ella’s Article 8 right to respect for her private life.  What is clear from my reading of them is the deep love, respect and admiration Richard had for Ella, and the importance for him of chronicling what was being done to his mother in the name of her “best interests”.  He says Ella gave permission and was proud of her son, the writer.  He says that sharing their experience may help others in similar situations.

The reporting restrictions applied “until further order of the court” – so even after Ella’s death, Richard was still unable to speak or write publicly about their experience of the Court of Protection.

Earlier this year, I helped Richard to apply for the Transparency Order to be discharged.  He said in his application: “I understand that the purpose of the Transparency Order is to protect the identity of the vulnerable person at the centre of the case (i.e. my mother) and now that she is dead, there is no purpose to it. I want to be able to tell the story of what happened to my mother and to be able to make information about this case public. I understand that my right to freedom of speech (and the public’s right to freedom of information) should now trump my mother’s right to privacy (as she has died). In any case she did not want privacy about this. I have already published extensively about my mother (see: https://www.smashwords.com/profile/view/democracyscience) but have not been able to write about the role of the court due to the TO.”  

Richard’s application to discharge the Transparency Order was listed for an in-person hearing at Scarborough Justice Centre in July 2024, with a direction for all parties to serve Position Statements.  We are very grateful to Tor Butler-Cole for pro bono assistance in writing Richard’s Position Statement:  it undoubtedly made a huge difference by providing a clear and authoritative statement of the relevant legal framework and its application to this case.  She invited the court to decide the case on the papers.  

And that is what happened.  The local authority did not oppose and the Official Solicitor did not seek any role in the proceedings. The court issued an order on  9th July 2024 (two months after Richard’s application) vacating the hearing listed for 26th July 2024 and saying that “The transparency order dated 4 March 2021 is revoked, such that there are no restrictions on the identification of EL, any member of EL’s family or the local authority in connection with these proceedings”. 

So here is (an abridged version of) Ella’s story.  You can read the full story in the books listed in the Appendix.

Ella’s story

On 11th August 2019, Ella Lung was admitted to hospital after a fall at home. Richard had called an ambulance. 

At the hospital where she was treated, safeguarding concerns were raised on the grounds she appeared unkempt and dehydrated on arrival.  Richard describes this as “a suspicion of mother abuse, as baseless as it was base, and without exoneration or apology, against an old man, they knew nothing of, who had no history or record of any offenses”.  

Ella remained in hospital until November 2019, when a ‘best interests’ decision was made to discharge her – but not back home with a live-in carer, as Richard wanted.  Instead, with what the local authority later called Richard’s “agreement”, Ella moved into a care home.  This is how Richard describes what happened. (The extracts come from his published journals.)

Dilatory and doubting social services pressured me into giving in to put Mum in a care home. She languished over one hundred days in hospitals. I had to commute by train to see her. The social worker said she was looking for a “placement,” doubting my ability to cope at home, and not pursuing the live-in carer option, even when she answered her questions. Then saying she would have to look for care homes further afield. That is to say out of my reach, against which I protested. So, I found a care home on the outskirts of town, for which “understanding” the social worker thanked me. But it was another hospital environment, leaving Ella stuck in a chair from morning till night. Social services again blocked my mother from coming home with another live-in care agency […] I was manipulated. But when manipulation failed before the reality of Mum’s misery, compulsion followed, with misrepresentation and manipulation of the reality of Mum’s wishes. I am not criticising the undoubted inadequacies of care homes but the determination of social services to prevent my mother having live-in care, instead. Economics reduces care homes to patient parking zones. […] . I thought, in the old way, that people could check themselves out of hospital. Not so. With the care home, Ella was locked-in, like a safe deposit. It appears to be underpinned by a sinister-sounding legality called “deprivation of liberties”, just another brick in the wall of the New Feudalism. A live-in care agency says that 97% of people would prefer to stay at home, when needing care. A fact towards which social services have been strangely obtuse in pursuing “best interests”. This is not a reason, it is just social services asserting its dictatorship, thanks to politicians’ passion for autocratic administrative law. While keeping a smile, Ella asked eloquently, amongst other things, why was she not allowed to go home? She was not a criminal. She hadn’t done anything wrong. […] The social services sinecure was depriving her of all faith, hope and care. (from Home Free)

By the end of 2019, Ella had already been reduced to the depths of sobbing misery, at her incarceration. Social services’ so-called minutes of her “best interest” meeting dismissed her protests as nothing but “occasional distress”. (Distress usually is occasional. That does not excuse the breach of her human rights.) Ella was not even allowed to attend, to put in a single word, of her own, about her own best interests. Whereas, the “professionals” were, as “The Chair” called them, all agreed (in group-think lock-step) to take away her freedom to go to her home, she worked so hard for, to be with the son, who lived with her, for seventy years. (from Ella sobs her heart out)

By early February 2020, following a Care Review, there was another ‘best interests’ decision to keep Ella in the care home where her mobility and nutrition were said to have improved,  Richard did not agree that remaining there was in his mother’s best interests, and he reported (though it was disputed by the professionals) that Ella was unhappy there and wanted to return home.

And then came COVID-19 – with visiting restrictions, routine testing, temperature checks, and PPE.  

On 30 June 2020, according to a funeral director, every single care home in town had the covid. Social services twice stopped me from bringing Mum home with a live-in carer (as told in the second book in this series). They put her life in mortal danger, as a result. Yet, their Deprivation of Liberties renewal, which they have the gall to say is for her “safeguard,” is just a rubber stamping of her imprisonment. Ella is old and frail, and we dearly want to be back together at home, as we have been, all my life. Her love will be in my heart, till I die. Social services relentlessly obstructed my mother returning home. Afterwards, I found that the abduction of the helpless young and helpless old alike, children and the elderly, from their families, amounted to a national scandal. (from Short-wave memory Mum)

Ella went on to experience various health problems, including COVID and a skin problem originally thought to be shingles.

She was reported with COVID-19 on 13 December 2020 which is a year after the social worker detained her in the care home. Ella caught a water infection in the care home and was on antibiotics for 5 days which had to be repeated resulting in terrifying and exhausting hallucinations. Also, after being taken off a pureed diet, Ella suffered a prolapse, with much loss of blood, and was rushed to hospital for emergency surgery. […]  On 19 May 2021, I learned from senior staff she has the shingles, associated with age, weak immune system (vulnerable to infections), physical and emotional upset. Ella’s distress was unbearable; I was on the phone to her for nearly 2 hours.

Fearing for his own health (at over 70), as well as Ella’s, Richard restricted his visits to the care home (which also required the use of public transport). He and Ella were largely limited to near-daily telephone conversations, which Richard documented in his journals.  Here are some extracts:

(I phoned Ella, in the care home, every evening — mostly getting thru — for over a year. Besides anything else, her chronic captivity was a torment to her.) 

Ella: I worked hard, all my life, I only helped other people. I have no record. How did I end up in a place like this! It’s not what I saved for. 

Son: I’m trying to get you out, but I have no power to do so. 

Ella (with mother love, worried): Don’t work too hard at it. I don’t want you to hurt yourself. Then I won’t have you to look after me. It won’t make any difference. If they can’t be kind, there’s no help for it.

Son: I have to try (to get you home free. 

Ella : I’m not stopping you from trying, but don’t over-do it. It’s no help to me, if you make yourself poorly over it… 

Son: I would make it better, if I could, but I can’t. I would bring you back home.

Ella: Yes, I should be living in it, now. ‘Cos I own it. Why am I not there?

Son: The state is given too much power over family life. They’re making the excuse you’ve lost your memory…

Ella: I’ve got a good memory, for my age. Everybody has a memory lapse, and they can’t lock ‘em up, because they can’t hear [or remember things].

Son: I sympathise.

Ella: Never mind, sympathise: it’s a crime, in my opinion. Down to brass tacks: it’s wrong. I wish I was at home. I never go there.

Son: It’s social services, they won’t let you go there.

Ella: Oh dear, isn’t it terrible? You can’t go to your own home, you’ve worked all your life to get. I do miss you, and when I ring up, I get heart-ache.… It’s very cold in this attic spot…

Son: Yes, Mum.

Ella: Ridiculous, isn’t it? I don’t know what to do with myself. I just sit here, on a side seat. And I don’t know nobody personally. I want to sit near you. I don’t know why we had to be like this. I haven’t done anything wrong. You’d think they’d want (family to be together. They would be with their loved ones, I’ll bet. Why can’t I? I haven’t done anything wrong. Maybe I shouldn’t be alive.

Son: Mum, I love you with all my heart.

Ella: I know you love me, but I can’t do any good. I can’t see you; I can’t do anything. I’m so upset about that, because I should be with my loved people.

Son: The thing I feel like doing is bursting into tears.

Ella: I’m the same, and I don’t want two of us. We’ll keep our heads. I love you. I wish I was sitting with you, to talk to you (from Nobody Knows)

I’m sat in this empty bloody room. I’ve nobody to talk to. I might as well be dead, without this. How can I live without a friend or relative? Where are you? In me bed-room. I mean, can’t you come? My health is deteriorating [– tragically true — ] and I’m unhappy. […]  And I’m going to die; I know I am. What else can I do? Horrible bed and walls in this horrible place. It’s not me, it’s the council. It’s no good, day after day, night after night; it’s a nightmare. Every day, without any friends, any relatives, nothing. I’m fed up with it. I’m thinking can’t you get me out of here? I can’t do that; it’s against the law. [What Ella called a wicked law: deprivation of liberties.] It’s a free country, isn’t it? Not any more. No help, nothing. It just goes on and on and on. And I die, in between. What have I done? – Nothing. Just helped people, all my life. Never had anything special for myself. Once you’re tied-up, nobody can help you. And I’m stuck in this bedroom, and I’ve no hope. […] I worked best I could. I looked after me family. What the hell is wrong with this world? – I’m not even going to talk about it. You can’t change the local law; never mind. What’s wrong with this bloody world? [I have tried to get you home.] I know you have. But it doesn’t work. You’re too good for any of ‘em. You have to do things different.… Long lonely nights; nothing to look forward to. (from Mother and Son)

Ella suffers emotionally from separation from the son she loves, in the house, she earned. She suffers mentally from a punishing imprisonment she does not deserve. And she suffers physically as a pneumonia-history patient, acutely sensitive to the cold, that a normal care home does not suit. She is 95, set to die there, because social services only obstruct. 
I apologise for my imperfections of journal presentation. However, they give my aged, impaired mother, Ella the right to speak, that social services Best Interest meetings denied her. In these journals, she claims her right to love and liberty, which has been denied her. 
As John Milton said, hundreds of years ago, a nation that no longer values liberty to speak the truth, becomes a sixth-rate nation. (Since 1989, Britain has had secret courts of family law, and of protection, for the young and old, respectively. Disclosers of their proceedings are thrown in jail.) 
I have tried to catch the nature of Mum’s loss of a sense of time and place, in order to better understand it. I have treated her dream-like versions of reality, as her impaired mind’s functional attempts to hold her memories together, as best she can, and preserve her identity as an individual and my beloved mother. 
Social services detained my mother from coming back to her house, from a care home. It’s a long story … . Ella, an impaired 95-year-old lost her memory. A treasure trove of memory is still there, but she cannot reliably access it. Having lived with my mother for seventy years, I am the one person she wants to be with. Ella still has her intelligence. 
It’s as if a computer processor was still functional but is thrown on the scrap heap, for want of a memory deficiency, that could be relieved by an external memory drive. My life-long companionship puts me in a unique position to fill in Mum’s memory blanks, to the great improvement of her quality of life. Social services have obstructed that alleviation of Ella’s condition. And caused her untold distress – untold, that is, till I brought out this journal series on Family-splitting. (from So, you’ve got a prisoner mother)

Court of Protection proceedings were issued in March 2021 under Section 21A of the Mental Capacity Act 2005 and the case made its slow way through the Court of Protection, with capacity reports, witness evidence about Ella’s wishes and feelings, assessments relating to care and support needs, lists of alternative care options and balance sheets for best interests decision-making, and – towards the end – a transition plan about how Ella would be conveyed home. There were to be initial short visits home for lunch (which Richard considered just “cruel”) followed by a “trial” of living at home, with reviews at three monthly intervals.

It all proceeded slowly – as these cases usually do, but no doubt exacerbated by the pressures of the pandemic. For Richard this was all “bureaucracy” – an unconscionable delay for a beloved mother in her late nineties. Time was not on her side.  

And Ella’s “shingles” was causing concern. 

A visit on 8th September

Visiting nurse: Ella’s “shingles” have not improved with antibiotics. And we’ve tried two types of cream. They are maybe worse. I suggest she sees a specialist dermatologist.

Son: I agree. [That’s how they eventually found out that Ella had an aggressive skin cancer.] Also, if it’s not impertinent, I suggest, because shingles is worse with physical and emotional stress on the immune system, Ella would be better off at home.

Ella broke in: Yes, I don’t know what I’m doing here, being kept here, like I was a criminal. I want to be home to my family.

Son to nurse: I wrote a long letter, on 10 August 2020, to our GP. I was answered, by the clinic, on 10 September 2020, that: “We would be happy to give an assessment of Mrs Lung, when she comes home from the care home”.

Ella: I don’t know what I’m doing here. It’s like being a prisoner. Why can’t I go home to my family?…  I’m sorry, I bet you don’t like having to keep coming to this blooming hole to see me.

Son: No, I don’t like it, but it’s worth it, to see you.

At the end of September 2021, Richard  was informed that Ella been diagnosed with an aggressive cancer.  He put in an urgent request for her to return home for palliative care.  Ella and Richard spent 20 days at home together before Ella died.

As I read what Richard has written, and compare it with my own experience of observing more than 550 Court of Protection hearings since 2020, I recognise this family’s story in so many others. As far as I know, everyone acted in accordance with the law, and for Ella’s “best interests” and I can imagine the “mountains of official verbiage” (Richard’s words) that this case generated by way of evidence and assessment and balancing of pros and cons.  I doubt anyone did anything contrary to the law, or to the guidance issued by their professional bodies  – and yet the emotional devastation caused is undeniable.  I have seen it many times before when people who love each other are kept apart, when strong relationships are severed.  Physical safety can come at a high emotional cost.  

Richard’s own distress and anger is palpable.  Here’s what he’s written about the Mental Capacity Act: 

The Mental Capacity Act was explicitly designed to liberate the vulnerable. But officials triumphantly claim it is in their “best interests” to be put away (profitably enslaved to their “care”). The “best interests” excuse is a latter-day “divine right” of state, which has inherited the divine right of kings.

Criminal suspects are protected by criminal law, that due process, to ensure the truth is known, by all, beyond reasonable doubt.

Ordinary civilians are exposed to the chances of civil law. Instead of objective proof of the truth, subjective assessments of a balance of probabilities, as to the truth, is ordained. This, in practise, means that the state version of events, given by professionals (those proud to make money out of a broken system) is taken as a matter of course. The government is supposed to be supporting independence, at home, for the elderly. But such cases, as have escaped to public attention, show that “a wicked law” (so-called by one of its victims, my mother, Mrs Ella Lung) of deprivation of liberties, is bitterly contested.

Family is a life-time of caring relationships, that makes for the affection, no institution can give. The state should be promoting the former, not the latter. Family love, not state power, is the foundation of society.

Mother was subjected to a Deprivation of Liberties, that deprived her of her love of freedom and her love of family, in short, her love of life. State supervision left her with an undiagnosed cancer that killed her. She might have had a few more years to enjoy her life, and be enjoyed by the company of her son. We only had each other. 

My heart yearns for my mother, she was so kind, even while she wanted, so much, for so long, to be free. A country woman of the great out-doors “locked in a box,” as she said, by the state. God help her; officialdom wouldn’t.

Attempts by the local authority to prevent Richard from speaking out about this experience – citing the Transparency Order – added insult to injury.  It is hugely important that families can tell their stories, because we can all learn from them.  I am grateful to Richard for his reporting.

This body of words is all the body Ella has left, on this earth, this life. It isn’t much, but it is something that needed to be done, to honour her memory, and her suffering. I hope that knowledge of Ella’s state-induced misfortunes might save other helpless folk from captivity in institutions. These publications cannot now give Mother any worldly help, but they remain a witness, for the sake of other unfortunates.

Richard Lung is the son of Ella Lung and author of many books which you can see here https://www.amazon.co.uk/stores/author/B00MFYBCWE/allbooks. Thank you to Richard for sharing the photographs of his mother (and himself as a child) which illustrate this blog post. Richard says of the photo on the left that it was taken by his Dad and “could not have been when I was more than 5 years old. That makes it 1954 or slightly earlier – so my mother would be 29 or slightly younger“. The photo on the right “was taken by Dad’s nephew shortly before Dad died, perhaps no sooner than 2011 or 2012. Mum would be 86 or 87“.

Celia Kitzinger is the co-director of the Open Justice Court of Protection Project and the Project’s blog editor. Both Richard and Celia can be contacted via the Project’s email address openjustice@yahoo.com

Appendix: Richard Lung’s journals

1. Nutcracker (social services family-splitting) June 2020

2.  Home Free (How the misery makers of social services twice obstructed Mums home-coming with a live-in carer) December 2019

3. Talking To A Cat In The Moonlight (Poorly mind lovely mother) June 2020

4. Short-wave memory Mum (life-imprisoned on her life savings) July 2020

5. Impaired imprisoned innocent (speak thy grief)  – summary of previous 3 titles

6.  Power mannequins August 2020

7. So, you’ve got a prisoner mother September 2020

8. Ella sobs her heart out (October-December 2020) 

9.  Another man’s master (January 2021) 

10. Nobody knows (April 2021)  

11. Mother and son (April 2022) 

12. A nation neglectful of the elderly (May 2022)

13. They’ve taken my life (July 2022)

14. And him me’be (May 2023) 

Withdrawing life-sustaining treatment: Faith and Science

By Jenny Kitzinger, 25th November 2024

Update: Judgment was handed down to the parties on 11th November 2024 and is available here: https://caselaw.nationalarchives.gov.uk/ewcop/2024/68. It authorises the withdrawal of life-sustaining treatment on the basis that, due to severe and extensive brain damage. continuing treatment is not in the patient’s best interests. The daughter sought permission to appeal against this decision. The case was heard on Tuesday 26th November 2024 at 10.30am and was live-streamed and recorded. Click on this link Re: XY (by her litigation friend, the Official Solicitor). The Court of Appeal did NOT give permission to appeal. Jenny Kitzinger has written another blog about the Court of Appeal hearing: Application to appeal against judgment authorising withdrawal of life-sustaining treatment: Re XY

My interest in observing Court of Protection hearings is informed by my sociological research on Prolonged Disorders of Consciousness [PDoC] – a term used to include patients along the continuum from ‘vegetative’ to ‘minimally conscious’ states.

I’ve been researching family experiences of PDoC since 2010, shortly after my own sister, Polly Kitzinger, suffered a catastrophic brain injury. In joint research with another sister, Celia Kitzinger, we’ve been tracking patient pathways, and interviewing family members and healthcare professionals about decision-making.

We’ve also contributed to professional guidelines relating to PDoC and life-sustaining treatment (for the Royal College of Physicians and for the British Medical Association) and created online staff training, and a support resource for families.

Court hearings about treatment for PDoC patients can give powerful insights into how healthcare professionals and families navigate the intersections between law and medicine, culture and ethics.

The desperately sad hearing that I observed on 5th and 6th November 2024 concerned a woman in her fifties who suffered a cardiac arrest in early May 2024, which deprived her brain of oxygen and had left her in a PDoC. This case (COP 20002405) was heard before Mrs Justice Arbuthnot.

The woman (I’ve been asked to refer to her as ‘XY’) is at the centre of a strong family and community. Until her collapse, she worked hard in her job and relished a rich family and social life. She was a loving mother, sister, niece and friend – a person who loved life, was a great cook, and a woman of faith who regularly attended church. Since her collapse however (now 6 months ago), she has never regained consciousness and she remains in intensive care. The treating team, and all three ‘second opinion’ experts who looked at her case agreed that she was in the lowest level of Prolonged Disorder of Consciousness (what used to be called a ‘vegetative state’) and that there is no prospect of any significant improvement. Her clinical team had already decided that antibiotics or interventions such as a tracheostomy were not clinically appropriate and these treatments were not on offer.

The Trust responsible for her care (King’s College Hospital NHS Foundation Trust) was seeking a declaration that XY lacks capacity to make her own decisions about medical treatment – something not in dispute – and also that it is no longer in her best interests to continue with clinically-assisted nutrition and hydration [CANH] and assisted ventilation. The application was passionately opposed by XY’s family and friends.

The applicant Trust was represented by Mr Michael Mylonas KC. The patient was represented (via her litigation friend, the Official Solicitor) by Ms Sophia Roper KC. XY’s daughter was represented by Mr Parishil Patel KC.

This hearing starkly highlighted the gulf that can exist between clinicians’ and family views of a patient’s condition and it showed the ways in which family may seek to challenge expert diagnostic and prognostic assessments. It also vividly illustrates how family and friends’ approach to decision-making about life-sustaining treatment may be fundamentally in tension with the approach taken by medical professionals, including for cultural or religious reasons, and how barristers for each party attempt to address this.

I’ll first describe the medical evidence as presented on the first day of the hearing, and then describe what happened on the second day, when family members gave evidence and the lawyers presented their closing positions. I’ll end with some reflections.

Day 1: The medical evidence

The first day of the hearing focussed on evidence from three eminent medical experts with many years’ experience in intensive care, brain injury and neuro-rehabilitation. These were: Mr X (from the hospital where XY was being cared for); Professor Wade, one of the two second opinions instructed by the Trust; and Dr Bell (the additional second opinion expert instructed by XY’s daughter).

At the outset there was discussion of whether the judge had access to the medical notes – I wasn’t sure I heard right – but think there was mention of an anticipated 2000 pages of medical notes actually turning out to be 13,000 pages (which might not be unreasonable given XY has so far spent around 180 days in ICU).

Rather than go straight into this extensive medical evidence however, everyone in court was careful first to acknowledge XY as the individual at the centre of the case and make it clear that her family and friends had been, and would be, heard. Mrs Justice Arbuthnot checked at the outset how the patient should be referred to (e.g. clarifying that the name for XY used by family was actually different from the name that appeared in some medical records). Mr Michael Mylonas, barrister for the Trust, opened his introduction by describing how loved XY was, and acknowledging the large number of family and friends present in court. Mr Patel, representing the daughter, then said he’d like to introduce not only XY’s daughter but also her grandson, brother, aunt, cousin, and ex-partner as well as two friends. The judge made a point of welcoming them – throughout the hearing she also reminded clinicians giving evidence to use ‘lay terms’ and ‘plain English’ when explaining clinical findings, and seemed to do everything she could when family and friends were giving evidence to ensure they were as comfortable as they could be in the circumstances. I felt there was a clear commitment to treating XY’s family/friends with sensitivity throughout the hearing, and perhaps some hope that they might find it useful to hear the evidence presented.

The four key medical experts had provided the court with devastating and entirely consistent written testimony. The three who gave oral evidence in court explained the reasons for their clinical judgments, the tests and examinations that had been carried out, and provided further explanation prompted by cross-questioning. This included questioning around the usual issues in these cases such as how the effects of any sedation had been taken into account in assessing XY’s level of consciousness, the meaning of her behaviours, the margins of error in medical predictions and the nature of tests such as the Coma Recovery Scale – all of which were meticulously explored and unpicked during the course of the hearing.

The clinicians explained that their conclusion that XY was at the lower end of a prolonged disorder of consciousness was supported by a combination of factors, all pointing consistently towards a negative prognosis. These factors included: the nature of the initial insult to the brain; evidence from brain scans, and XY’s trajectory of change; and current presentation in terms of responses and reflexes.

Initial insult: Evidence from ambulance records showed that XY had suffered oxygen deprivation for well over an hour. There was physical evidence of this long ‘down time’ – it had damaged other organs as well as her brain. It was, said Dr A, “One of the longest cardiac arrests that I have ever encountered where there has actually been a return of spontaneous circulation” (Dr A).

Brain scans: Findings from structural and functional scans of XY’s brain carried out regularly since her injury give no hope for improvement. The last electroencephalogram [ECG] (the most recent of five) “shows no improvement” and is “profoundly abnormal”. The latest computer tomography [CT], Dr A explained “shows a deteriorating situation – with essentially shrinkage of brain; the medical term would be ‘atrophy’.” Any hopes that somehow the brain might repair or rewire itself were unjustified, given the global damage resulting from oxygen deprivation.

Trajectory since injury: The trajectory of the patient presentation over the six months since her injury was further evidence against hope for recovery. All that had happened during the first couple of months since her cardiac arrest was that her eyes had opened and she’d developed sleep-wake cycles and then there had also been a change in the characteristics of eye-opening (e.g. eye-opening to loud auditory stimuli). None of the medical witnesses thought that these changes altered XY’s prognosis. These were, the doctors explained to the court, simply characteristic of a normal evolution in this condition rather than anything to indicate improvement. The care taken with language was notable: at one point the treating clinician (Dr A), while drawing attention to the fact that such changes had also happened several months ago and there had been no changes since then, stopped himself on the verge of saying “improve” and replaced it with “evolve”: ‘Things have not continued to imp…… evolve over time’ (Dr A). The clear implication is that even if there had been a change, it would not necessarily have pointed in the direction of recovery.

 ‘Responses’/reflexes: The clinical witnesses also reported a lack of responsiveness – even to pain. The patient has a swollen and protuberant tongue and chews down on it – but although this has been distressing for staff, XY does not appear to have any pain response to this. (A special mouth guard is now used to prevent injury and regular general anaesthetic is needed to release and clean the guard). She also does not appear to respond to deliberately administered painful stimuli (such as is used in testing consciousness). The only potential marker of pain is when there is manipulation of the oral cavity and the mouth guard – when she shows increase in blood pressure and heart rate which could be explained by a “triggering of sympathetic nervous system” (Dr Bell). Movements made by XY likewise do not provide any evidence of consciousness, say doctors. In spite of the family belief that XY is now following commands at times, the tests and observations done by healthcare professionals do not support this. Family members felt that XY would move her foot to instruction, but Dr Bell said that his tests showed: “if you push the foot away, there would be backward pressure. If you pulled the foot downward, you’d get a similar backward pressure return to neutral – regardless of whether you were asking for it to be done. That is the basis on which I concluded that this was a spinally mediated reflex.” (Dr Bell)

A lot of time was spent on questions about the meaning of XY’s eyes, mouth, hand and feet movements with exchanges such as the following:

Counsel for daughter: Ms XZ (XY’s daughter) has taken videos – her mother can follow someone around the room [with her eyes] and is able to squeeze her hand…Would you consider that responsive to her environment?

Dr A: We have never been able to elicit such responses.

Counsel: But the family has reported that. Is that evidence of response to environment?

Dr A: There is a difference between what they’re reporting and what we are objectively seeing.

Counsel: Is that, in your view, evidence of XY reacting to her environment, if they’re right?

Dr A: I can’t deal in a hypothetical. We have not seen reactivity.

Counsel: Is it right to say that family, who know that person well, who have a history with that person, are able to elicit responses that doctors or nurses are not able to? That happens, doesn’t it?

Dr A: I disagree with you on that [in this case]

Counsel: So how do you explain that?

Dr A: I think what they are seeing is random eye roving.

Counsel: What about the squeezing of the hand?

Dr A: They are reflexes that are mediated by the spinal cord.

Judge: ‘Mediated’?

Dr A: The process relies on those parts of the brain that we already know have maintained function, such as the brain stem and the spinal cord. The hand movement [they describe] is independent of higher brain activity.

Counsel: They ask her to squeeze their hand, and she does it. Is that still explained by reflexes?

Dr A: I’ve not seen that response. And nobody that’s objectively examined XY has been able to elicit any such response.

Judge: When you say ‘mediated’, caused?

Dr A: Yes, caused.

One of the two second-opinion experts instructed by the applicant (Professor Wade) not only indicated that he did not think XY was responding, but said “I don’t think she has any awareness that individuals she knows are present … she doesn’t know whether a person (regardless of whether she knows them) is present or not”.

This view was supported by the third ‘second-opinion’ expert who had been instructed by XY’s daughter (Dr Bell, consultant in intensive care/anaesthesia). Although the daughter must have instructed this additional second opinion doctor in the hope that he might come up with a more optimistic view than the other experts, his findings were entirely consistent with what every other expert had found. When the Trust’s barrister asked Dr Bell “what are the prospects of XY understanding that someone is asking her to squeeze their hand and then squeezing their hand”. Dr Bell simply replied that this “would be outside all accepted medical knowledge”.

The family and friends listening in court (and the judge) could have been left in little doubt about the consensus from experts experienced in Prolonged Disorders of Consciousness in general, and about the condition of XY in particular.

Day 2: Family evidence and final positions of the parties

On the second morning, three family members (daughter, aunt and brother) testified from the witness box. The closeness of the family was very clear. XY’s daughter said: “She came to my house most days – she’s my best friend”; XY’s aunt said they’d speak on the phone almost every night: she had known XY even “before she was born” and went out with her often: “I was her basket for shopping – every time she wanted to go shopping, she’d call me”. Her brother said that his sister was like a mum to him: “the person who has always been there for me. She keeps me on the straight and narrow”.

In spite of all the evidence presented the previous day, these family members remained adamant that XY had a level of awareness unrecognised by the treating team. Her aunt, for example, said that XY had moved her mouth trying to speak to her and had held hands with the pastor when he visited. The daughter said her mother sometimes blinked or squeezed her hand on request, or lifted her feet when asked (“I’ve got videos and everything”).

Family members felt XY had already improved (her eyes open more, and she no longer needs dialysis) and “she has had a massive improvement…at first, she was lying down in coma with eyes closed doing nothing at all; now that’s not the case” (Daughter). It was clear that they would not give up on fighting for the opportunity for XY to recover: “If a person is in hospital you are meant to do every single thing, try everything possible…. I pray for her, tell her ‘don’t give up on yourself, you are a fighter, we love you, keep fighting’.” (Daughter)

They challenged the doctors’ prognostication: “only God knows” explained XY’s daughter, highlighting a story about a young boy who had defied pessimistic predictions from doctors. XY’s aunt expanded on the issue of faith from her point of view: “The doctors are scientists and religion is different. I don’t say nothing bad about them, but we see miracles work in our church. … I can’t believe what’s happened but I know we are going back to shopping in [local place] together– yes, that’s my faith” and (addressing the judge) “Give her a chance, because God is waiting to deliver her. She is a miracle girl.” (Aunt)

The idea of allowing death by ceasing life-sustaining treatment was anathema to their family culture and their faith: “She’s still here. She’s here for a purpose. It’s not for man to take someone’s life” (Daughter); “If they do what they are planning – it is like catch an animal and cut their neck while they are still alive” (Aunt). Pushed on what her mother would choose if the doctors were right, and she could not improve, the daughter replied “My mum would choose life over death. Her religion, she would never choose to die…she wouldn’t want me to give up on her. She would want us to fight for her.” (Daughter)

The final witness was a close friend of XY’s – who could not be in court but joined by video link. Her testimony focused powerfully on her friend’s unwavering commitment to her role within the family. “Her children are literally her life. I believe she would want to continue as long as possible and hold on to the hope that she can still be part of her family’s journey… Her presence, even in her current state, is a source of comfort and inspiration to her loved ones…[XY] would value any type of life that allows her to be present with her children because they are everything to her, her children and her grandchildren”. (Friend)

The clinicians listening in court, and the judge, could have been left in little doubt about the values and beliefs that informed XY’s approach to life – and what those who knew and loved her believed to be the right way forward.

In brief closing statements, the barrister for the applicant Trust re-emphasised that the expert evidence was “all of one voice” in concluding that ongoing life-sustaining treatments are of no benefit to this patient. He reiterated key medical evidence and the legal framework for the decision now to be made. He pointed out that XY had not discussed what she might have wanted in the circumstances she now found herself in and that, while her loving family had aspirations for her recovery, regrettably there was no prospect of her ever returning to them in any way that they so fondly remember her and no prospect of her gaining pleasure from their presence. “In those circumstances, the applicant asks that the court makes the declaration in the form sought.”

Counsel representing XY’s daughter went next. He did not dispute the strong medical evidence but instead reminded the court of the strong presumption in favour of life and that a best interest analysis must consider what XY herself would regard as meaningful. “Witnesses who know her”, he said, “believe that she is still present. It is too early to give up on her… Not because they don’t understand the bleakness [of her situation] but because they believe in the power of faith, the power of miracles, God – and they say that is XY, that is the essence of who she is”. They appreciate, he said, that professionals explain her behaviours, such as hand squeezing, as merely reflex – “they understand their [the doctors’] view – but they disagree”. In addition, “If XY could choose being in her current very compromised state – they all, without hesitation, are of the view that she would choose life.” He rounded off by saying “The family are not unrealistic, they are not unreasonable. There may come a time…they would say when God chooses…but it is not now”.

Counsel for the OS presented her closing statement last. She paid tribute to the woman who “was, still is, a central part of her family”. But her position was that “XY’s family fundamentally do NOT accept the full medical evidence and believe she has improved, that she knows they are there and responds to them”. Very sadly, she said, the medical evidence refutes this, and the circumstances could hardly be more stark: XY will remain in the state she is until she dies from another event such as further cardiac arrest or overwhelming infection. She will never leave critical care which is simply keeping her alive with no prospect of improvement. With immense sadness, the OS therefore supports the application. Ms Roper rounded off by addressing the feelings evident in some family statements which suggested an equivalence between what was proposed for their loved one and actively ‘killing’ her. She signalled the difference in law between allowing death by discontinuing treatment (which is lawful in England and Wales) and an intervention to bring about death (which is not lawful – although, of course, it is currently being debated in parliament). Stopping life-sustaining interventions does not, she said, mean bringing about XY’s death but means ‘ceasing medical intervention that has halted a process that started on 6th May”.

The judge said she would make her judgment on Monday 11th November 2024 – although at the time of writing I have not yet been able to see a copy of this.

Reflections

In this final section I want to reflect on (a) the features of PDoC that contribute to challenges for decision-making about life-sustaining treatment and (b) the role of the court in cases like this

The challenges of PDoC in decision-making about life-sustaining treatment

This case powerfully illustrates some of the reasons why it can be difficult to reach a consensus about a PDoC patient’s condition and future (let alone a consensus about the implications this has for life-sustaining treatment).

Prognostication after brain injury can be complex for many (but not all) patients and needs to be specific to the individual. Some seriously brain injured patients make progress, sometimes unexpectedly (and sometimes this is because previously accurate diagnosis and/or appropriate care and treatment has been lacking). Prognostication can need time; clinicians talk about giving patients a suitable period in which to ‘declare themselves’ (depending on the type of brain injury among other factors). It’s also true that patients may demonstrate more awareness with people familiar to them, so it is important to pay attention to what family and friends report.

During the course of this hearing, the clinicians were very specific about the reasons for their high level of prognostic certainty for this particular patient. The quality of care given and individualised attention to her specific diagnosis and prognosis were explained. The high level of certainty was convincing. But it was obvious that family members testifying in court did not ‘agree with’ (Counsel for daughter) or ‘accept’ (Counsel for XY via the OS) this medical evidence. Part of the resistance from family members was linked to their specific culture and faith – but it also seemed to be tied up with more general features about PDoC that are relevant to many families I’ve worked with (whatever their culture/faith). I pull out four key aspects of PDoC here

1. Background information about PDoC is absent and/or distorted:

  • Catastrophic acquired brain injuries come out of the blue, and relatives often have to process information while still in shock about someone being taken from them in the prime of life, and without the years of processing information about the condition that may happen with other types of disease (e.g. progressive neurological conditions).
  • PDoC itself is rare, therefore people do not have a general understanding about it (as they might, say, about dementia which, however imperfectly represented, is a more common experience).
  • However, they’ll have often heard stories about ‘coma’ – particularly the miracle recovery stories that are exchanged in everyday conversation and social and religious networks, as well as in the news and in films (check out this video on media representations of ‘coma’ here: https://www.youtube.com/watch?v=_hu-veDtj1w&t=55s)

2. Clinical information can conflict with family experience

  • The clinical information is highly specialised and difficult to make sense of. (The care needed to try to turn the clinical information into ‘lay language’ and ‘plain English’ was foregrounded during this hearing).
  • Patient presentation is confusing. What doctors are telling families (e.g. that the patient is unaware) may conflict with what families see. It does not fit with lived experience at the bedside (or media images of what unconsciousness looks like). I’ve explored this in depth in a previous blog: “Seeing is Believing”.

3. Not all injuries are the same

  • The brain is very different from other organs – but people may expect brain recovery to follow the same trajectory as physical recovery. In this case it was evident that the healing of XY’s kidneys gave the family hope for the healing of other areas of damage
  • Neuroplasticity allows for potential improvements in function after localised damage (e.g. from a stroke) but this cannot be extrapolated to the type of global, anoxic injury suffered by XY.
  • Deterioration may not be obvious to families (as it would be with neurogenerative conditions) even though deterioration may be inevitable (in this case, for example, brain atrophy).

4. The normal evolution of patients in PDoC can feed hope of further recovery

  • It is common for families to feel their relative is a ‘fighter’ simply through having survived the initial life-threatening incident and to believe that the patient has ‘improved’ simply as they stabilise physiologically.
  • The evolution from a ‘true coma’ to the vegetative state (which is typical of what happens early on after serious brain injury) is often interpreted by families as progress – with eyes opening and blinking being particularly emotive.
  • Finally, the person in PDoC may look relatively healthy and this can prompt optimism about the future. Indeed, I’ve had family members tell me that a patient is actually healthier than they were before. For example, if the serious brain injury is associated with the consequence of drug abuse or anorexia the person may look ‘better’ because they can no longer abuse drugs or because a normal body weight has now been achieved via CANH. This isn’t applicable to XY in this case, but I wondered whether her excellent care (in spite of difficulties such as the swollen and protuberant tongue) was giving an unrealistic impression of wellbeing.

One potential value of the hearing for the family was the thorough and skilled way these features of PDoC were addressed by the experts as they gave evidence.

The role of the court

The second element I want to reflect upon here is the role of the court in cases like this. In some ways, this hearing seemed to work really well. It was a formal and respectful forum for a thorough, open (and, of course, public) consideration of the issues. The family had the opportunity to hear from (and question) the clinicians at length about their assessment in this formal setting; and the clinicians, and judge, had the opportunity to hear from (and question) the family. Everyone contributing to this hearing showed a huge amount of care and commitment to trying to make the right decisions for this patient – and a strong sense of XY’s own values and beliefs (alongside the clinical evidence) was foregrounded in court. It may be that the court process was useful in ensuring all the high quality evidence was pulled together and also in providing assurance (to the family) that any decision reached was the responsibility of a High Court judge and that, whatever the outcome, they had fought as hard as possible for XY to have any chance of recovery and had never ‘given up’ on her.

However, I was left wondering about the pros and cons of this case coming to court at all. The clinicians looking after XY were confident that interventions such as tracheostomy and antibiotics were not clinically appropriate and not on offer. Might they not have come to the same conclusions about CANH (especially given XY’s condition six months on from her anoxic injury)? I didn’t really understand, from what was said in court, why they had not arrived at that position.

Perhaps it was because, although CANH is legally defined as “medical treatment”, for many people (clinicians as well as families) it can feel more akin to ‘basic care’. Or perhaps the stark assertion that a treatment is ‘not on offer’ feels easier to make in relation to a treatment that has not already been started – despite their equivalence in law? Or perhaps the team or the Trust (or the lawyers) took the view that it was necessary to come to court in light of some recent rulings?

A blog post by Alex Ruck Keene and Victoria Butler-Cole (“Don’t ignore the Serious Medical Treatment Guidance – but let’s be clear about what the law requires”) was prompted by a case earlier this year (GUP v EUP and UCLH NHS Foundation Trust [2024] EWCOP 3). They comment: “it is not always necessarily easy to distinguish between a dispute about clinical appropriateness (including, as a subset, futility) and a dispute about whether a treatment that is in principle appropriate is nonetheless not in the best interests of the person“. In the particular case they were examining though (which has clear factual similarities to XY) the Trust had obtained independent second opinions from two doctors and this, they suggest “is one where that dividing line has been properly tested” such that it is “likely to mean that the Trust is on much stronger ground in concluding that it does not need to go to court to get, in effect, no more than confirmation that treatment is not clinically appropriate.” That’s effectively what happened in this case too.

I wonder whether the clinical team in this case genuinely felt this was a best interests decision for XY such that they would have been willing to offer continuing life-sustaining treatment indefinitely if the court had so ruled. Or whether, on the facts of this case, the situation was such that further treatment was simply clinically inappropriate.

Postscript: The daughter sought and was refused permission to appeal this judgment. Read Jenny’s blog about it here: Application to appeal against judgment authorising withdrawal of life-sustaining treatment: Re XY

Jenny Kitzinger is co-director of the Coma & Disorders of Consciousness Research Centre, and Emeritus Professor at Cardiff University. She has developed an online training course on law and ethics around PDoC and is on X and BlueSky as @JennyKitzinger 

“It is a process that isn’t fair”: Structural injustice in the Court of Protection

By Daniel Clark, 24th November 2024

The words, “it’s a process that isn’t fair”, were uttered towards the end of the hearing on 21st November 2024 by Alison Harvey, counsel for the protected party’s mother in this case.  It’s rare to hear barristers explicitly criticise the fairness of court proceedings – and in this case, I think she is right.

The protected party, B, was taken into care in January 2024. Her mother, JB, desperately wants her to return home, but this has been opposed by the London Borough of Lambeth and by the Official Solicitor.  In the last 11 months, the court has authorised first taking B away from her family and putting her into care, and then her continued deprivation of her liberty in unsuitable placements where she is “suffering” (according to her mother) followed by a third move to another placement rather than a return home.  

This case (COP 14116349) has been heard by Mr Justice Keehan, who has been sitting remotely (via MS Teams). Counsel for the parties has remained the same throughout October and November: Sebastian Elgueta, of Garden Court Chambers, represented the applicant local authority. Alison Meacher, of Gatehouse Chambers, represented B via her litigation friend, the Official Solicitor. Alison Harvey, of One Pump Court, represented JB, B’s mother. 

I will begin, in the first section below, with a brief background to this case. Second,  I will discuss a hearing on 3rd October 2024, where the judge refused an application for B to move home. Next  in the third section, I will discuss a hearing on 31st October 2024, at which concerns about a Working Together Agreement, and contact between B and her mother, were raised.  In the fourth section, I’ll  report on a hearing on 21st November 2024 at which the judge found it was in B’s best interests to move to Placement 3 rather than move home. Finally, in the fifth section, I reflect on counsel’s explicit statement that the process “isn’t fair” to B’s mother, and I say that this can be best understood as a structural injustice. 

1. Brief background

Here’s a very brief background to what is becoming a long-running case. I have previously observed five hearings in this case and blogged about them in a single post here: Closed hearings, safeguarding concerns, and financial interests v. best interests. 

This case first came to court in 2023, when the local authority applied to the Court of Protection for an injunction that would guarantee access to the protected party (B) for the purposes of assessment – access which, they said, was being frustrated by her mother. 

In December 2023, serious allegations concerning sexually inappropriate images on B’s devices triggered a police investigation. The case was transferred from First Avenue House to the Royal Courts of Justice, for hearing before a judge of the High Court. 

In January 2024, Mr Justice Keehan approved the local authority’s application for B to move from her grandmother’s home (where she had been temporarily living) to Placement 1. 

For much of 2024, there were concurrent closed proceedings[1]. These are hearings from which the judge orders exclusion of a party and their legal representatives. This may give rise to disadvantage for the party that a judge has directed be excluded but they are perfectly lawful. In this instance, the judge excluded the protected party’s mother, from these hearings because they concerned the police investigation. 

On Wednesday 22nd May 2024, a hearing I observed in open court, Mr Justice Keehan heard an application by the local authority for B to move from Placement 1 to Placement 2. This was opposed by her mother and by the Official Solicitor, and the judge did not accept that the move was in B’s best interests.

On Friday 27th September 2024, I observed in an urgent hearing in which Mr Justice Peel (hearing this case for the first time) considered the same application. This time, however, it was brought because Placement 1 had said B would have to leave just three days later, on Monday 30th September. On this occasion, the move was only opposed by B’s mother. Peel J authorised the move to Placement 2, stressing it was “for an interim, short-term, period”. 

Since my last blog post there have been three further hearings: two in October 2024, and one in November 2024 in advance of P’s move out of Placement 2 which is projected to take place in the final week of November.

 I’ll explain what happened at the first hearing briefly, and then the second two in more detail.

2. The hearing on 3rd October 2024: A best interests decision between Placement 2 and returning home, pending a move to Placement 3

This hearing was already in Mr Justice Keehan’s list and was intended to consider B’s move from Placement 1. Notwithstanding the fact that B had already moved, Mr Justice Peel directed (and the parties agreed) that this hearing should still take place.

It transpired that the local authority had identified another placement, Placement 3, that they think would be more suitable for B (who had, by this time, moved to Placement 2). In the interim they, and the Official Solicitor, considered it to be in B’s best interests to remain at Placement 2. 

Counsel for B’s mother submitted that staff at Placement 2 “have been very kind to [her mother] – I know they’ve been anxious to support her, support [her daughter]”. However, Placement 2 is “a frightening place that is more restrictive, it is simply not in her best interests”. Another resident, who should receive 1-to-1 care, has been entering B’s room, and has been threatening toward both mother and daughter. 

Counsel for B’s mother further submitted that the court should authorise an interim move home. 

The judge however was “not persuaded…I am fortified in that conclusion by hearing today that the relationship between [B’s mother] staff and the manager is very much improved…In relation to the issue today, I endorse the placement in the interim of [B] at [Placement 2]…We will consider the issue at the hearing on the 31stOctober”.

3. The hearing on 31st October: Problems at Placement 2 – a “Working Together” agreement and concerns with contact

It was immediately clear from the opening summary, provided by Counsel for the local authority, that the situation at Placement 2 had become worse. 

As set out in the position statement filed on the mother’s behalf, her daughter’s door is – on occasion – locked to prevent access from residents who have previously attacked her and tried to attack her daughter.  The daughter is also distressed by the screaming and shouting of other residents, and she is currently washed on her bed because there is no safe alternative. Furthermore, she has been experiencing a lot of pain, with an ambulance called for her on numerous occasions. It also appears that information is not flowing freely between Placement 2 and the local authority.

It also transpired that disclosure of care notes from Placement 1 have revealed an incident in which B was found (twice) with a man whose hand was on her leg. She became distressed when asked to leave this man’s company. While the parties did not know of this at the time, it appears this incident coincided with when B’s behaviour began to deteriorate (for example, she started pulling out her hair).  

I have split my report of this hearing into three primary issues: 3.1. a Working Together agreement that contains what were described by Counsel for B’s mother as “in effect unfounded allegations” against her; 3.2 communication issues with mother; 3.3. concerns raised about contact between mother and daughter, and how this affected the mother’s application for B to move home on an interim basis. 

3.1 The Working Together Agreement 

In his submissions, Counsel for the local authority said the court was initially going to be asked to approve a Working Together agreement. It was now decided that everyone should “continue working with [B’s mother] to arrive at an agreement” without the need for a court order.

A Working Together Agreement is a document that provides assurances (given by all sides) as to how individuals and agencies will interact to best support and safeguard a person. I had only ever heard about them in the context of supporting children, though Avaia Williams has blogged about a case in which a Working Together Agreement was drawn up to express expectations of conduct. In a similar way to this case, the Agreement was between a residential placement and P’s mother. 

Both the local authority and the Official Solicitor seemed to be of the view that that this document is a positive step forward, and that it will be possible to put it into place soon.

Counsel for B’s mother disagreed. In my previous blog, I reported that Alison Harvey’s advocacy was of an impressive standard. Things were no different at this hearing. In her submissions, she stated that the Working Together Agreement is “more like a behaviour expectations document and it does include what are in effect unfounded allegations against [B’s mother], disguised as expectations”. 

Counsel drew the Court’s attention to the fact that the document states that B’s mother should not visit B while under the influence of drugs or alcohol. This seems to be based on two sources. First, there was one reference, in a meeting record contained in the bundle, to there having been a historical report of a cannabis smell at home. There was no suggestion B’s mother had anything to do with this. 

Second, a carer from Placement 1 had recorded in B’s care notes that, when she and JB were assisting B to put on a cardigan, the carer could smell alcohol on JB’s breath. Counsel’s submissions on this were brief and to the point: “Well, [B’s mother] doesn’t drink so, no, she couldn’t [smell alcohol] and [Placement 1] have not proved a reliable record keeper.”

The mother’s Counsel resolutely rejected the suggestion that the mother has done something wrong, and reminded the judge that this position was supported by the police having not interviewed JB and having decided to take No Further Action. 

3.2. Communication between other parties and the mother

A consistent issue raised throughout these proceedings has been that B’s mother has some difficulties in processing all of the information related to the case. There are therefore some interim ground rules that the other parties must follow, including submitting evidence in a timely manner so that her legal team are able to take full instructions. 

These ground rules are not being followed, and Counsel for B’s mother submitted that the late filing of evidence (which I will address in the next section) “would be unacceptable in any legal proceedings, certainly not in these proceedings with the ground rules…We are not even seeing from the Official Solicitor the respect for the spirit of the ground rules when they cannot be followed to the letter…It’s not acceptable”. 

The judge, in a brief ex tempore judgment, acknowledged these submissions. He said, “I take on board the issues raised by Ms Harvey on behalf of the mother, about her and those whom she instructs receiving information late in the day, which, as Ms Harvey puts it, compromises to a degree the mother’s ability to engage in these proceedings. That must be avoided at all possible costs”. 

It seems to me that any continued inadequacy in the communication between the parties and JB may well violate JB’s Article 6 right to a fair trial. The Court of Protection is being asked to significantly interfere with her Article 8 right to a private and family life – so on grounds of equality of access to justice, she must be provided with the support she needs to be  able to engage fully in the proceedings. This is not just down to the role of the parties – the court also has an active duty to ensure that she can fully engage.

3.3 Concerns about contact

The reference to the Official Solicitor not following the communication ground rules was made because the legal team for B’s mother were told six days before the hearing that a solicitor (acting on behalf of the Official Solicitor) had visited B and reported that B had said she did not want to see her mother. 

B’s mother’s legal team did not know until the day before the hearing that there had been another visit, where B expressed the same views, on the 9th October. If they’d known on that date (or shortly thereafter), they would have had plenty of time over the next few weeks to receive instructions. As they did not find out until six days before the hearing (which was also just before a weekend) they could not gain full instructions on this point. 

In the words of Counsel for B’s mother: “we were beyond disappointed – we were angry”. 

In her submissions to the court, Counsel for the Official Solicitor explained that the Official Solicitor’s “main concern…is that the wishes and feelings expressed to those instructed by the Official Solicitor who have visited [B] is that she doesn’t want to see [her mother] or she only wants to see [her mother] at her request”. 

I have observed every public hearing in this case since January 2024, and nothing like this had ever been suggested before. It has been a consistent theme that mother and daughter are extremely close.

Counsel for JB submitted “we do not agree with what was said in that statement. It has been taken by a solicitor when [B] is not wearing her hearing aids and not with a Speech and Language Therapist” in attendance. Furthermore, B had told a Best Interests Assessor, after meeting with the solicitor on 9th October, that she did want to go home. 

However, Counsel for the Official Solicitor told the court that the solicitor visited B again, with a Speech and Language Therapist, after the visit of the Best Interests Assessor. On this occasion, B again expressed that she did not want to see her mother except by invitation. This is also the reason B’s mother’s legal team did not find out after the visit on 9th October  – the solicitor wanted to be sure that they had understood properly. 

Counsel for B’s mother submitted that the current plan was for B to be asked weekly when she wants to see her mother. However, this type of planning wouldn’t work because B makes plans in the here and now. Instead, Counsel submitted, B should be asked in the presence of her mother whether she wants to see her.

The judge said he found this that was not “a very good idea or a workable plan…It may be that she [B’s mother] is, on occasion, present. But it must not be the case that she [B] can only be asked when her mother is present”.

Counsel for B’s mother accepted this, though pointed out that, “we are in the situation which has been raised before…B says what she thinks others want to hear. And just as there is a problem with speaking in front of her mother, there may be a problem with other people as well. It is important that her wishes and feelings are obtained where she doesn’t feel a certain answer is the desired answer. And we need to think very carefully about what she is asked and by whom”. 

During these submissions, I did recall that, during a previous hearing, it had been mentioned that B sometimes may respond to questions in ways that she thinks somebody wants her to answer. Indeed, the judge appeared to see some force in these submissions – he was nodding while they were being made.

The thrust of the submissions made on behalf of B’s mother was that B should return home while plans for Placement 3 were being finalised. Then, at another hearing, the court could decide whether it was in B’s best interests to move to Placement 3 or remain at home. 

However, the judge found that “at the moment it would appear that [B] does not want to have contact with her mother and that, for no other reason, means I cannot accede to [her mother’s] request that [B] move in the interim”. He was nevertheless clear that the local authority must “heighten its vigilance of [B’s] stay [at Placement 2]”, and the issue of contact “needs to be addressed as a matter of urgency”. 

4. Hearing on Thursday 21st November 2024: Judge rules P should move to Placement 3 (not home)

At the end of the last hearing, Mr Justice Keehan indicated that he would be content to deal with an application for a move on the papers (that is, without an in-person hearing). However, if that was not possible, he had space in his list for a hearing on 18thNovember. 

When 18th November came and went without a hearing in the daily list, I assumed that the matters had been dealt with on the papers.

I was therefore surprised when I saw this case in the daily cause list for 21st  November (I later found out the hearing was moved at the request of the local authority, though I don’t know why). As it was listed for the morning, I was able to observe and sent my request for the link to the court the evening before. 

This was dealt with expeditiously by the court staff, and a solicitor acting for the local authority also sent me the position statements filed on behalf of the local authority and (after checking with her Counsel) that of B’s mother.  As is a common theme in this case, I never received the position statement of the Official Solicitor. 

It became clear from reading the position statements that the hearing was to be about a proposed move from Placement 2 to either Placement 3 or home with her mother. The position statement on behalf of B’s mother explained that, while she wanted B to move home, she would rather B move to Placement 3 rather than remain at Placement 2. 

The position of the local authority and the Official Solicitor was that it is in B’s best interests to move to Placement 3 because this will help her to develop some independent living skills. She would have a flatmate who both parties considered to be “compatible” with B – a phrase that evoked images (in my mind) of a type of conveyer belt social care where people live together without having had the chance to decide for themselves whether they actually get on. 

Counsel for B’s mother submitted that there was no reason that B could not develop independent living skills at home. B’s mother also disputed the “compatibility” of B with the other flatmate due to (possible) differences in their respective abilities and level of independence. 

Concerns about contact remained. Counsel for B’s mother disputed that B does not want to see her mother, submitting that the questions put to her on this matter are complex and misleading. The Speech and Language Therapist is, she submitted, acting as an intermediary but this is an inappropriate role for them to take on. 

Counsel for B’s mother gave specific examples of how these questions were leading. She submitted that an attendance note filed by the Official Solicitor detailed that B was asked, “do you want to see [name]?”, and so on. However, when it came to questions about seeing her mother, the structure of questioning changed. Counsel told the court that the question became: “Remember you didn’t want to see mum? Well, is that still your view?”

Neither Counsel for the Official Solicitor nor Counsel for the local authority disputed this characterisation of the way the questions were posed. Having not seen the attendance note, I can only assume that this is an accurate report of how the questions were asked. This is yet a further example of the way in which B’s mother is being continually disadvantaged.

Counsel for B’s mother submitted that B “is being passed around like a parcel. We have seen a decline in her physical health, her mental health, how she describes herself as feeling. There’s no question – she is not the same as she was at the start of these proceedings”. 

Rather than a “rushed third transition”, Counsel submitted that B should return home to live with her mother. A transition plan could be perfected, and the court could decide whether B should remain at home or move to Placement 3 at a later hearing.

In a brief ex-tempore judgment, Mr Justice Keehan said this: “The Official Solicitor is satisfied that the discussions that have taken place with B have elicited her current wishes and feelings and, in particularly and importantly, for whatever reason, B does not wish to see her mother. On the basis of the evidence and submissions presented to me…I consider it is in B’s best interests to move to Placement 3. In any event, I do not consider it in her best interests to move home, not least because she does not wish to see her mother. Hopefully, for the benefit of B and her mother, that will change, and there will be a resumption of contact between them in due course”. 

5. Reflections on a concerning case

I have been observing this case since January 2024, which means that I have been able to trace the subtle changes in the positions of the parties.  

Throughout this year I have had a feeling, which has been growing in intensity, that B’s mother is significantly disadvantaged in this situation despite the skilled advocacy of her barrister. As her barrister put it at the end of her submissions on 21st November, “it is a process that isn’t fair at the moment despite efforts to make it so”. 

In particular, the closed proceedings in the case have disadvantaged the mother and her legal team because they were excluded from knowing what was happening during a police investigation. Now, a Working Together Agreement contains what B’s mother describes as “in effect unfounded allegations”  against her. 

The position statement filed on behalf of B’s mother for the hearing on 21st November says that this agreement, as it stands, would only prejudice carers against her. This draft, the position statement goes on to say, has further persuaded her that professionals “appear determined to think the worst of her and to present her in the worst possible light”. 

These problems are exacerbated by the fact that, despite clear instructions from her legal team concerning communication, the parties are not following these ground rules. 

This is all the more worrying that it is the case of her legal team that the breakdown in communication which triggered the original court proceedings was due to ignoring the best way to communicate rather than conscious evasion on the part of B’s mother. As Counsel for B’s mother put it in an earlier hearing: “There is a steadfast ignoring of the best way to communicate with [B’s mother] and we say that that is at the root of the original concerns that the local authority had about communication, keeping appointments, etc. They have not distinguished between unwillingness and inability.”

All of this is placing B’s mother at a significant disadvantage. I am quite confident that these disadvantages amount to a what the political theorist, Iris Marion Young, calls “structural injustice”.  

A “structural injustice” is not one in which individual actors consciously choose to cause injustice to others. Instead: “Structural injustice exists…when social processes put large groups of persons under systematic threat of domination or deprivation of the means to develop and exercise their capacities, at the same time that these processes enable others to dominate or to have a wide range of opportunities for developing and exercising capacities available to them. Structural injustice is a kind of moral wrong distinct from the wrong action of an individual agent or the repressive policies of a state. Structural injustice occurs as a consequence of many individuals and institutions acting to pursue their particular goals and interests, for the most part within the limits of accepted rules and norms” (Iris Marion Young, Responsibility for Justice, p52).

I do not doubt that the majority of those who work in the legal and social care sector want to do what is best. For the most part, they are neither malign actors nor consciously working to exclude and disadvantage. 

However, the theoretical force behind the concept of structural injustice is that we can describe certain processes (like closed proceedings) as an injustice without also making a claim that those who engage with them are bad actors. 

Rather, certain structural processes mean that certain classes of people are disadvantaged while others are not. They are acting “within the limits of accepted rules” – like closed proceedings and the creation of a Working Together Agreement that makes family members feel like they are seen as a problem. For example, the Working Together Agreement in this case says that B’s mother should not be abusive to carers without also including a comparative commitment that carers will not be abusive to her.

Just as family members excluded from hearings feel that the court suspects them of doing something wrong, so too a ‘Working Together Agreement’ to regulate contact with professionals clearly signals some perceived problem in the way they have previously conducted themselves in relation to those professionals, a problem that the agreement is designed to ‘put right’.  

Family members are structurally disadvantaged both by closed hearings and by Working Together Agreements because both are initiated by others to “manage” families who are thereby positioned as posing some kind of risk either to the justice system or to the health system, such that extra-ordinary practices need to be adopted in relation to them.

The Court of Protection needs to acknowledge this head-on if it wants to mitigate the disadvantage and injustice that family members can feel themselves to be experiencing.  

Daniel Clark is a member of the core team of the Open Justice Court of Protection Project. He is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research considers Iris Marion Young’s claim that older people are an oppressed social group. It is funded by WRoCAH. He is on LinkedIn, X @DanielClark132  and Bluesky @clarkdaniel.bsky.social.

[1] Members of the public are ordinarily also excluded from closed hearings, though Mr Justice Keehan did permit me to observe one (at the end of August 2024). I haven’t reported on the contents of this hearing and I am not allowed to do so. But, as I also stress in my previous blog, “the fact that the judge allowed me to observe demonstrates his view that members of the public can be trusted to observe closed hearings without jeopardising the integrity of a case” – so permitting me to observe does represent a positive move for social justice.

An in-person hearing on anorexia (Re CC): Observer’s rollercoaster and the role of “hope”

By Sydney White, 21st November 2024

My experience observing the final hearing of Re CC (previous hearings blogged as: Respecting autonomy in treating anorexia nervosa and Treatment for Anorexia Nervosa: A brief directions hearing) was tumultuous in more ways than one. I’ll first describe my unusually challenging time as an in-person observer at the Royal Courts of Justice and how it translated into a greater appreciation for the importance of transparency. I’ll then discuss Mr Justice Hayden’s final decision and the role of “hope” in the case. 

In the hot seat?

On the first day, the hearing was scheduled to begin at 11:30, so I arrived at the Royal Courts of Justice at 10:30 anticipating a lengthy entry process. Luckily, there was no line and I whisked through security. I thus had upwards of an hour to take in the enormous magnificence of the Courts; the space is staggeringly beautiful. 

I wanted to be absolutely sure I was not late, so at 11:00 I made my way to the (rather less impressive) Queen’s Building where the hearing was to take place. When I found the courtroom, the family were all waiting outside, mingling with counsel. The person we now refer to as “CC” (though the case had been listed and reported under different initials at the time) was off to the side, standing alone. Trying to be as respectful as possible, I sat down a few tables away from the group and focused my attention on my laptop, though the urge to watch and listen to the family was intense. Then I heard my name loud and clear: “Sydney White”.

My head whipped around instinctively, and my heart began thundering when I realised that one of the family members had uttered my name. She had her phone open and was pointing to the screen, showing it to counsel for the Trust, Adam Fullwood. I quickly realised that she was referring to the blog post I wrote on the case, which had gone up the day before. She was concerned about anonymity, specifically about the fact that I had used the initials of the protected party from the public court listing. The family member also brought up the blog post by Daniel Clark, which mentioned that CC belonged to “a large Jewish family”. Mr Fullwood agreed to bring up the matter in court. 

Trying to stay as calm as possible on the outside, internally I was in a panic. I messaged Celia Kitzinger (the blog editor of the Open Justice Court of Protection Project),  terrified that I had broken the Transparency Order or would have to face questioning from Mr Justice Hayden in court. I debated saying something then and there, but decided to stay quiet to avoid raising conflict. Celia reassured me that we had done everything in accordance with the Transparency Order and if necessary, I must attribute responsibility for anything under dispute to her as blog editor, since she had made the final decisions about what to publish. She offered to make herself available to the court (remotely) if that seemed appropriate.  I wrote up a little speech based on her words in case Mr Justice Hayden did, in fact, ask me to say anything.

There I was, my first time ever observing a hearing in person, stomach turning and heart pounding because I thought (rather dramatically, looking back) that Mr Justice Hayden would soon be admonishing me or that one of the family members would begin shouting at me when they learned that the girl at the back of the courtroom was, in fact, “Sydney White” herself. When I wrote my name down on the attendance sheet, I felt like I was painting a giant red X on my chest.

I steeled myself and waited for the hearing to begin. Mr Fullwood raised the issue before the judge; he did not say my name but stated that blog posts had gone up which referred to the protected party by the initials orginally selected by the court. Mr Justice Hayden pondered the issue briefly, then said “The initials will be changed”. 

And that was that. I breathed a sigh of relief.

The other point of view

Underneath my fear during that 15-minute experience, there was another emotion coursing through me: guilt. I felt ashamed that I had caused this family stress and, at least in their minds, potentially exposed the difficulties of a loved one to the world. As important as it is for us to maintain open justice in the Court of Protection, I also understood how they could feel what they were feeling. I was sympathetic to their point of view.

Mr Justice Hayden put it nicely in his response to Mr Fullwood when the issue came up again at the end of the day, this time specifically about the references to CC’s Jewish family. He looked at the family and said: ”If I thought there was a chance of identification through [the blogs] I would shut it down in the blink of an eye. I think you’re being understandably anxious“. The judge also reiterated the purpose and importance of Transparency Orders, stating that “…a young person is entitled to some degree of privacy in this process. And so her Transparency Order is in place which permits all members of public to hear everything that goes on in the case but prevents them from…learning anything at all about the individual”.  Thus, Transparency Orders balance patient privacy and open justice – at least in theory (see Daniel Clark’s ‘postscript’ about the transparency order in this case: Treatment for Anorexia Nervosa: A brief directions hearing.)

People can have legitimate disagreements, of course, about whether a balance has been correctly struck.  Hayden J’s judgement (discussed below) dives into the minutiae of CC’s family and religious community. Although that level of detail seems quite exposing, those factors were key in allowing Hayden J to reach his decision because they illuminated crucial features of CC’s methods of thinking and interactions with the world. I think in cases like these, where the issues of capacity and best interests are so intricately tied to the patient’s personal characteristics, some degree of privacy may have to be sacrificed in order for a judge to present a well-reasoned case. 

In a way, this event ended on a high note: it provided an opportunity for CC to assert her autonomy and participate in the proceedings. Mr Justice Hayden wanted CC to be the one to choose the new initials to allow her, in his words, “to exercise her autonomy in as many ways as possible”. The protected party did not, ultimately choose the initials – she said she didn’t care. But it was not all for naught: in place of the initials that the court had originally used in public listings and in the Transparency Order, her mother chose “CC”.  Although we were not required to do so by the Transparency Order (because they cannot operate retrospectively), we changed our blog posts to reflect that choice.

Hope – the judge’s decision

I want to reflect on both the hearing and the published judgment (Barnet, Enfield and Haringey Mental Health NHS Trust v CC & Ors [2024] EWCOP 65 (T3)) specifically in relation to the concept of “hope”.

The first day of the hearing was dominated by evidence from doctors: Dr Matthew Cahill, an independent expert consultant psychiatrist, and ‘Dr W’ who has been treating CC for several years. The conversation quickly became what was essentially a debate about whether ketamine treatment was in CC’s best interests at this time. Dr W thought it was; Dr Cahill disagreed. 

Throughout the hours of medical evidence, a recurrent theme was the importance of the hope that CC had vested in ketamine treatment. For example:

Dr Cahill: We need to be mindful that there was very much a hope of receiving ketamine…we should be mindful of the consequences.

Hayden J: You’ve already heard me say that I recognise how much hope she had vested in ketamine, but that doesn’t mean I will be satisfied it’s in her best interests.

And on the second day, when giving evidence CC’s father said: “She needs to come out today with the same hope that she had with the ketamine”.

Mr Justice Hayden recognised this when he gave his oral judgment, stating that “Dr W’s position was essentially that she had invested so much hope in the ketamine that for her not to get her way would cause her to lose hope. And so that set up an utterly invidious dilemma. Dr Cahill thought ketamine was bound to fail, and Dr W thought ketamine was utterly integral for any way forward”.

The main factors that ultimately led to Hayden J’s decision against ketamine treatment were (1) the risks of ketamine treatment and lack of evidence regarding its use for patients with anorexia and autism spectrum disorder (ASD) and (2) Dr Cahill’s opinion that the core issue driving CC’s depression and disordered eating was her ASD. Dr Cahill firmly believed that “all other treatments would be futile” if CC’s ASD was not treated. 

And yet Mr Justice Hayden emphasised in his judgment that ketamine was not entirely out of the picture for CC. The Trust will bring the judge a plan for “robust, muscular, well-supported and properly resourced ASD therapeutic treatment …accompanying a plan to encourage CC to seize the opportunities that she has and to endeavour to cooperate by taking on and retaining as many calories per day as she can. Alongside that, Dr W and Dr Cahill are going to consider suitable medication. That regime may or may not lead to consideration of a ketamine-based therapy in the future. The therapeutic intervention contemplated may make that quite unnecessary if it succeeds. But if it doesn’t succeed, and if we do find ourselves at the end of the road, then I signal to CC that that is an option that will remain open and available in my mind”.

Thus, the judge did his best to maintain and encourage CC’s hope. CC will continue receiving treatment. Her life will go on, and it seems, paradoxically, that a key factor in reaching that decision was the judge’s recognition of the hope she had in a treatment he refused to grant her at this time. As he said in court: “I have listened to her and her family, the doctors and her nurse. I have been left with a prevailing impression of a young woman in whom the lifeforce beats strongly. Her psychiatrist has introduced and discussed with her the possibility of ketamine treatment. She has invested this with all her hopes and dreams. As the evidence has progressed, I have come to feel that she sees it as her salvation. There could not be a heavier or greater investment in it. But, to my mind, that can only signal the clearest possible will to live. Why else would she be so preoccupied with it?  Irrespective of its suitability, the risks and advantages, the extent to which she reposits hope in it seems to me to show she has hope and chooses life”.

This comment from Hayden J – and the case overall –  makes for an interesting and instructive contrast with another I watched recently, also before Hayden J and also concerned with an anorexic protected party.  In both his oral and written judgment, Hayden focuses on CC as a unique individual and explores her wishes and beliefs in detail.  He was not able to do this for  the anorexic patient in the case he heard recently under Schedule 3 of the Mental Capacity Act 2005. As I discuss in another blog post, (Cross-jurisdictional challenges and Schedule 3 in a case of anorexia: Health Service Executive of Ireland v SM [2024] EWCOP 60), Schedule 3 allows Orders from the Irish Courts to be recognised and enforced in England, but also prevents the kind of intense engagement with the individual at the heart of the case shown here. 

By comparison with the oral judgment in court, in the published judgment Hayden J seems to rein himself in. There is no mention of “lifeforce” or “salvation”. Instead, Hayden J describes CC as being “immensely enthusiastic” about ketamine (§38). The concept of hope was used in a more measured, objective way; the judge writes that “to invest so much hope in Esketamine, only for it to fail, would leave CC with no hope and no alternative plan that she could begin to contemplate. If Esketamine is to be tried, it must have the best possible opportunity to be successful” (§45). In this way, Hayden J uses hope to justify his decision regarding CC’s treatment, rather than as evidence of her “lifeforce”.

Hayden J also uses hope in a different way in the published judgment: he emphasises his own hope for CC and her family. His comments on the possibility of ketamine being used in the future are rephrased to: “[CC] must not perceive my decision as ideologically resistant to what may yet prove to be, and I hope will be, a progression in the treatment of this awful and insidious condition” (§47).  He states, “[m]y respect for her and her family is, I hope, obvious”, and acknowledges that “whilst it is not the judgment CC would have wished for, she will, I am confident, understand it… I hope she will be able to take some heart from it” (§48).  

The reasoning presented for his decision is essentially the same in the written form of the judgment as it was orally in court, but the language and tone of the published version are more restrained. 

Closing thoughts

All in all, my first time observing a Court of Protection hearing in person was tumultuous, but fruitful. I learned that being an observer can be intimidating, though mine was perhaps an extreme (and hopefully unique) case. I learned that the balance between privacy and open justice is a very fine one, and that sometimes a well-reasoned judgment demands more detail about an individual’s life than she might be comfortable with.

I also learned that the difference between what happens in the courtroom and what makes it into a published judgment can be striking. When analysing cases during my research, I will remember that although the judgments are often emotional, they can still be a subdued representation of what happened during the hearings. Observing this case has provided me with a much broader understanding of mental capacity and best interest assessments for anorexia nervosa patients. I’ve looked under the rug, so to speak, and found that the judgments I read are just one part of a much bigger picture.  

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 Court of Protection’s approach to best interests assessments for patients with anorexia nervosa under the Mental Capacity Act 2005. Her fascination with Medical Law brought her to the Open Justice Court of Protection Project.  She has previously published these blog posts: Respecting autonomy in treating Anorexia Nervosa, and Cross-jurisdictional challenges and Schedule 3 in a case of anorexia: Health Service Executive of Ireland v SM [2024] EWCOP 60. She can be found on LinkedIn at www.linkedin.com/in/sydney-e-white, on Twitter/X @sydwhiteCOP and on Bluesky@sydneywhite

Note: Direction quotations are taken from contemporaneous notes and I believe them to be correct, but since we are not allowed to audio-record court hearings, they are unlikely to be 100% verbatim.

The patient with no friends or family: A challenge for best interests assessment

Jenny Kitzinger, 15th November 2024

It felt quite lonely and empty in Court 33 in the Royal Courts of Justice when I went (in person) on 14th October 2024. 

The case (COP 14234849) concerned a man in his early 60s who’d suffered a cardiac arrest in 2017, been resuscitated, and then remained in a prolonged disorder of consciousness [PDoC] ever since. He had no visitors, and at the time of the court application no family or friends had been identified and very little was known about his life before his injury, except that he had been very socially isolated.

The central issue to be determined by the court was whether or not it was in his best interests to continue clinically-assisted nutrition and hydration – although it soon became apparent there were also some more general issues at stake.

Usually, when I go in person to a hearing about PDoC there are family present – indeed, historically my reason for going along to a courtroom (as opposed to, more recently, just attending online) has been precisely to support the patient’s relatives in court. I’ve done this as an offshoot of my research in the Coma & Disorders of Consciousness Research Centre: we often have people coming to us for help when they have concerns about their relative’s care, particularly when they are frustrated by failures or delays in addressing best interests around life-sustaining treatment.

Going to this hearing made me realise that of multiple PDoC court hearings that I’ve attended, I’ve only twice before been at hearings without family or friends present. Once this was because the patient’s brother was too distressed to go (although he’d submitted a detailed statement) and asked me to go along instead; another time, the family were expecting a simple ‘directions hearing’ and were happy for me to simply report back to them – but the judge decided to make a final ruling because the evidence was already so compelling. (The man in question had already been a permanent vegetative state for over 20 years and his parents were clear that he’d not have wanted that: see Kitzinger J & Kitzinger C. (2017) Why futile and unwanted treatment continues for some PVS patients (and what to do about it) International Journal of Mental Health and Capacity Law. pp129-143.)

So, being in court this time felt very different. There was nobody who knew the patient and could try to articulate his possible views – no family members who might disagree with each other about what those might have been. There was nobody to miss or mourn him, and no sense of an individual who was part of a family or community. 

There were almost no resources for the court to work with in an effort to ensure that the protected party’s voice was heard as much as possible, no material to ensure that his wishes and values were ‘present’ in the court. Extensive efforts had been made by the clinicians involved. The Official Solicitor, who’d been able to deploy third party disclosure orders, had also tried to gather information. But it had proved impossible to find anything that might give the court insight into this patient’s wishes, values, beliefs and feelings that might be relevant to his current situation.

This lacuna not only impacted on the atmosphere and process of the hearing, it also, of course, created challenges for making a best interests decision and raised questions of principle about how to assess the patient’s best interests. It is that which makes this case so particularly interesting.

It also accounted for the presence of a journalist sitting on the press benches. The majority of court hearings about adults in PDoC do not receive media coverage. What attention they do get may be random (a journalist just happens to be in court on the day), unless the press are informed in advance that there may be something interesting about a particular case that makes it of more general public or legal interest.

The hearing

This case was heard before Mrs Justice Theis, the vice president of the Court of Protection.

The application was brought by the NHS North Central London Integrated Care Board [ICB] responsible for funding the patient’s care – represented by Claire Watson KC. The application was for the court to determine whether it was in this patient’s best interests to continue to receive clinically assisted nutrition and hydration (CANH). The court was also being invited to produce some general guidance about how to handle best interests when there is very limited evidence about a patient’s wishes, feelings, belief and values because of the absence of friends and family.

The other parties were the Royal Hospital for Neuro-Disability (where the patient resides) – represented by Ms Katie Scott, KC and the protected party, known as ‘XR’, represented (via his litigation friend, the Official Solicitor) by Mr Michael Horne KC.

The patient had suffered a severe hypoxic ischaemic brain injury in 2017 (then in his 50s) and had been an inpatient at the Royal Hospital for Neuro-Disability (“the RHN”) since Spring 2018. 

The treating team and second opinion experts agree that he is in a prolonged disorder of consciousness [PDoC], with no prospect of any recovery, and at the lowest end of the spectrum (what historically would have been labelled a Permanent Vegetative State). His treating clinician, Dr A, felt that in the absence of knowledge about XR’s wishes, the decision about clinically-assisted nutrition and hydration was ‘finely balanced’.

Two second-opinion experts gave oral evidence in court: Professor Wade, Consultant in Neurological Rehabilitation and Dr Hanrahan, Consultant in Neuro-rehabilitation. Both took the position that it was clearly not in XR’s best interests to continue with CANH. 

Professor Wade testified first – and he was cross questioned about how he’d made his diagnosis, and in particular why he thought it was possible that, even in his highly compromised state, XR might experience some form of pain (‘in the moment’, without the ability to anticipate, explain or remember it). He was also asked in what way XR’s condition or treatment might be considered ‘burdensome’ if he, in fact, could not experience that burden, and asked about XR’s day-to-day life and his future. It was clear that XR’s future was one of inevitable deterioration, but he was clinically stable. If life-sustaining treatment continues, he might die soon anyway from a one-off incident, or alternatively he might live on for another 10, or even 20 years.

Dr Hanrahan gave evidence next. His testimony and cross-questioning covered a similar range of issues. Generally, this presented a very consistent view of XR’s diagnosis and prognosis but it was clear that Dr Hanrahan had a different view on the potential for pain – judging it inconceivable that any pain could be experienced given the severity of the brain damage. He agreed with Professor Wade, though, that it was right to provide treatment ‘as if’ pain might be experienced.

There were other questions to both experts, including some that sounded rather critical from the Official Solicitor, asking Professor Wade about why he thought it was a straightforward best interests decision to discontinue CANH for this patient and on what basis he had speculated about what XR’s wishes might have been. Counsel for the Official Solicitor, Mr Horne, drew attention to, and problematised, inferences about what XR might want by reference to survey data about what ‘most people’ would want in this situation. He also challenged a postulation that a man who lived in such an isolated way probably valued his privacy and would have found his current situation of total dependence in a hospital anathema to the way he lived his life. Mr Horne pointed out that further rigorous investigation that the Official Solicitor had been able to do (e.g. using powers to get information disclosed from other organisations with which XR had had contact during his lifetime) had revealed more information than others had been able to obtain, and that one could not assume that how someone lived was necessarily though choice.

The closing statements from all three parties concluded that it was not in XR’s best interests for CANH to be continued. 

Each closing statement also argued for more judicial guidance for cases such as XR’s, with the Official Solicitor concluding that, without the appointment of the Official Solicitor and bringing these cases to court, clinicians risk making unjustifiable inferences and also: “marking their own homework and being judges in their own courts”. It was not clear to me from the hearing what general principles were being drawn from this case and how that might inform judicial guidance about cases ‘like XR’ in future, and I didn’t feel I’d heard the evidence around that unpacked in court (although there was much more information in the Position Statements which I received later, after they’d been redacted). 

The judgment

The judgment has now been handed down. It’s available here: NHS North Central London Integrated Care Board v Royal Hospital for Neuro-Disability & Anor [2024] EWCOP 66 (T3) (14 November 2024)

Is CANH in XR’s best interests?

A far as the key question about CANH is concerned, the judgment is straightforward. Mrs Justice Theis rules that it is not in XR’s best interests to continue to be given CANH.

Delays – again!

The judge is highly critical of delays in considering this patient’s best interests. She quotes the Official Solicitor’s statement that “even in a specialist facility such as the RHN”, XR remained “drifting in a vacuum of ineffective best interests decision making for a number of years.” Such delays, the judgment emphasises, are ‘wholly unacceptable and contrary to the patient’s best interests”. The judgment also spells out an important message for Integrated Care Boards. Annual reviews of the care the ICB commissions:

 “.. should include active consideration by the ICB at each review to be vigilant that the care package includes an effective system being in place for best interest decisions to be made in these difficult cases so that drift and delay is avoided. The ICB should not just be a bystander at these reviews.” 

The issue of CANH being given by default without any best interests assessment is a depressingly familiar point. Judges have been criticising this in case after case for many years now, and it’s something I’ve written about in several articles (e.g. Kitzinger, J & Kitzinger, C (2016) Causes and Consequences of Delays in Treatment-Withdrawal from PVS Patients: A Case Study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32, Journal of Medical Ethics, 43:459-468.)

Ironically, in some ways the recent cases exposing delays in relation to patients at the RHN may be partly because this hospital has made efforts to get systems in place, and review patients’ best interests – following major criticism of how another patient, ‘GU’, was treated by the RHN in a judgment published in 2021 (North West London Clinical Commissioning Group v GU [2021] EWCOP 59.) 

While the RHN undoubtedly has more work to do, I am very concerned that some centres with a large number of PDoC patients never seem to have any cases come to court. This leads me to suspect that these centres may not be carrying out best interests reviews of CANH at all, as it seems unlikely that all of their patients have clear-cut best interests, where there is no dispute about CANH or where the decision is never finely balanced.

General guidance? 

The judge declined to produce the general guidance requested in the application from the ICB. But it was interesting to see though that a lot seems to have happened by way of evidence-gathering, reflection and discussion around the general points since the hearing. Not least, some parties may have changed their positions or arguments, with consultation happening with those involved in producing professional guidelines about PDoC for the Royal College of Physicians and the RHN position moving away from requesting judicial guidance in these cases.

The Official Solicitor, however, had reportedly remained of the opinion that a discrete sub-category of cases where CANH discontinuation is being considered should come to court. 

Later, in §84 of the judgement, it is stated that if judicial guidance requires cases ‘such as XR’ to be brought to court the Official Solicitor submits that this will facilitate “a reduction in the pool of patients who are unlawfully receiving continued longstanding life-sustaining treatment by default because of an absence of family or friends to consult”.

It is not obvious how implementation of the suggestion in para 80 could result in facilitating such a reduction in treatment by default for these patients as outlined in para 84. It seems more likely to exacerbate the problem by creating a new barrier (the need for court application) to withdrawal of treatment from Ps without family and friends.

Clearly, a “reduction in the pool of patients who are unlawfully receiving continued longstanding life-sustaining treatment by default because of an absence of family or friends to consult” could only be achieved if the category of cases which “must” be brought to court were composed not only of those cases where there is a consensus within the treating clinical team that it is in Ps best interests not to continue life-sustaining treatment (as suggested in para 80), but also those cases in which the treating clinical team have adopted the position that (since family and friends are not available to argue a contrary position), treatment should simply continue indefinitely. 

The reality on the ground is that clinically stable PDoC patients are routinely given CANH and other treatments by default, often for decades. Our research shows that withdrawal of treatment that is not in a patient’s best interests often comes about only with the intervention of family members to advocate for the patient, and that without families to raise concerns about ongoing treatment, it is likely to continue by default. (Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives).

There is a great deal more in the judgment to analyse, including reflections on how Independent Mental Capacity Advocates might investigate when patients are unable to communicate values, wishes, feelings and beliefs themselves and have no family or friends. Finally, this judgment could also usefully be analysed in relation to the question of when treatments are ‘on offer’ or not, and when a decision is a ‘best interests’ decision at all – a matter that does not seem to have risen to the surface of the arguments made in this case. 

Jenny Kitzinger is co-director of the Coma & Disorders of Consciousness Research Centre, and Emeritus Professor at Cardiff University. She has developed an online training course on law and ethics around PDoC and is on X and BlueSky as @JennyKitzinger 

Declaration of conflict of interests: Jenny Kitzinger has recently been on a work placement at the Royal Hospital for Neuro-disability but had no involvement in this case and did not observe or write about the hearing as part of her placement activity.