Uncertainty about capacity for contact – and the inappropriateness of using the inherent jurisdiction

By Josie Seydel, 2nd February 2023

On Monday 23rd January 2023 I attended a court hearing (via MS Teams) before Mrs Justice Lieven (Case number 13825449). The hearing lasted almost exactly one hour.

In introducing the hearing, Mrs Justice Lieven made a particular point of emphasising the importance of the Transparency Order (of which I have yet to receive a copy) protecting P’s anonymity and prohibiting the recording of the hearing. 

The case concerns a 34-year-old woman, P, who was described as having “a diagnosis of learning disability in the moderate range and an autistic spectrum condition”.  She had also been recently diagnosed as having an emotionally unstable personality disorder (EUPD) while in hospital last year.

P has been assessed by a clinical psychologist, Dr K.  His section 49 report has been followed by disagreements between the parties as to how his evidence should be interpreted, and further questions asked of him had apparently led to “some inconsistencies in answers”.  The view of the Integrated Health Board (ICB) was that it would be necessary for Dr K to give evidence in court in order to resolve these matters.

The parties agree that P lacks capacity to conduct legal proceedings, and to make a tenancy agreement.  They also agree that she has capacity to make decisions about her residence.  There is disagreement or uncertainty about her capacity in relation to safety in the community (specifically around traffic when she is in a state of heightened anxiety), and some or all of the care and support she receives (especially in the community).

The area of capacity that seemed of particular concern was contact with others.  Although Dr K was reported to be of the clear opinion that P does have capacity to make decisions about contact with others, this finding seemed not to accord with how her family and carers see her. It became clear during the course of this hearing that P is “over-familiar” with people.  The social worker described how “she will tell you males she’s just met are already her boyfriend. Recently she approached someone randomly in the pub and got their telephone number and staff were saying, ‘you’ve only just met him – is it really safe’ and they were successful and she’s deleted the man’s number.  But she puts herself in precarious situations. I’m surprised no harm has come to her.”[1]  

This seemed to raise a question as to whether P was (capacitously) making unwise decisions, or whether she lacks capacity in relation to contact in the community. 

The case was before a Tier 3 judge because the local authority had made an application to apply under the ‘inherent jurisdiction’.  During the hearing, this application to the inherent jurisdiction was withdrawn.

The hearing

As this is only the second CoP hearing I have attended, despite the helpful introduction by Judge Lieven, I was still a little baffled and grappling with a number of new acronyms, concepts and a lot of names. I am hoping that with time, this will become less cumbersome and therefore be less of a distraction from being able to report in greater accuracy and detail.

Counsel for the local authority (LA) began by providing a brief biography of P (who wasn’t in court), including a brief history of her care and his current concerns regarding her care and safeguarding. The LA, along with the ICB (who had their own separate representation) are providing the care for P under section 117 of the Mental Health Act,  following P’s discharge from hospital in November 2022 (where she was assessed and diagnosed as having EUPD). The care support involves 24-hour 2-to-1 carers for P, in what was described as a residential care setting, where P had agreed to reside following her discharge from hospital.

The LA are trying to establish how to safeguard P when she becomes dysregulated in public settings and around traffic, which both cause her heightened anxiety; they are also seeking clarification on how to manage her levels of care and carer support; as well as how to restrain her from inappropriate contact with strangers, when verbal dissuasion is ineffective. 

An assessment of P, made in March 2022 by Dr K (who was not present at this hearing), came to the conclusion that P ‘had the capacity to be aware of the risks’ of her contact with strangers – but this was contested as being an inconsistent finding both within the assessment and (possibly) as evidenced by P’s inappropriate and risky behaviour in the community. It was explained by the LA representative, that “P will engage in conversations which may lead her to risky situations with unknown members of the public” and that she had a “history of sexualised comments with unknown males”. Verbal dissuasion and reasoning with P, if ineffective, the LA argued, would necessitate a degree of restraint. The LA explained this restraint as ‘placing a hand on an arm or leading her away’; if that was insufficient, then ‘low level physical intervention’; and then calling the police if P became aggressive. 

 The LA was making an application under the “inherent jurisdiction” (IJ) because they wanted the judge to authorise this course of action in challenging situations where P’s behaviour was deemed to be putting her at risk, even if P has capacity to make her own decisions about who she has contact with.  

When I watched this hearing, I had no idea what was meant by “the inherent jurisdiction”, but Munby’s description gives a good summary:

“[T]he inherent jurisdiction can be exercised in relation to a vulnerable adult who, even if not incapacitated by mental disorder or mental illness, is, or is reasonably believed to be, either (i) under constraint or (ii) subject to coercion or undue influence or (iii) for some other reason deprived of the capacity to make the relevant decision, or disabled from making a free choice, or incapacitated or disabled from giving or expressing a real and genuine consent.” (Thisdescription given originally by Munby J in Re SA (Vulnerable Adult with capacity: Marriage) [2005] EWHC 2942 (Fam) at paragraph 77, then endorsed in Re DL).

This means, that P could legally be restrained by her carers and have her freedoms restricted when deprivation of liberty (in P’s best interests, under the Mental Capacity Act 2005) is not applicable. 

In essence, my understanding is that, in this instance and similar cases, the IJ would function as a sort of legal loophole for authorising restrictions on someone who has capacity in the area on which restrictions are imposed – essentially overriding their wishes. 

In advance of this hearing, counsel for P (via her litigation friend the Official Solicitor) had raised concerns about invoking the inherent jurisdiction.  These concerns related to ‘the Wakefield case’, and ‘Re DL which I looked up afterwards.  In the first of these cases, Cobb J concluded that “the inherent jurisdiction should not be used to deprive a capacitous person of their liberty” and described it as “a potentially arbitrary mechanism for authorising a deprivation of liberty”.   In Re DL, MacFarlane J upheld use of the inherent jurisdiction for vulnerable adults who fall outside the protection of the MCA but whose capacity is overborne by non-MCA circumstances, e.g. coercion and undue influence. Rather than undermining autonomy, the inherent jurisdiction is to be considered part of a ‘great safety net’ that “is in part aimed at enhancing or liberating the autonomy of a vulnerable adult whose autonomy has been compromised by a reason other than mental incapacity[4] . In this hearing Judge Lieven said she was “bound by DL not the Cobb case” (because it is from the more senior Court of Appeal).

The Official Solicitor was “concerned that the court’s exercise of the inherent jurisdiction may be being sought to circumvent the assessment that [P] has capacity to contact others” and that in reality it may be that the local authority just disagrees with the conclusion as to P’s capacity to make this decision.  

Counsel for the Local Authority withdrew the application for the case to be heard under the inherent jurisdiction.

That left the need to decide whether or not P has capacity to make her own decisions on contact in the community.  Should a (new) expert be instructed to assess this?

Mrs Justice Lieven remarked that “a vast amount of lawyers and legal expenses” were being used on “a relatively small amount of issues, with very fine distinctions” and that further assessment “does not feel to me, like a proportionate way forward, in a cash-strapped system” where in the case of P “there are already 8 lawyers and 3 detailed assessments”, pertinently adding “What benefit is there to P in all of this?”

I strongly feel that her Ladyship’s comments here point to the loss of focus on the individual at the centre of the case that may arise when legal professionals become engaged in the minutiae of the law and academic arguments.  The consequence is that P, the person at the centre of the case, and her feelings and wishes, become at risk of being overlooked, as does the immediacy of her vulnerability and care needs. This judge repositioned P and her needs, as the focus of the hearing.

The Judge asked P’s social worker for an account of P’s history and current day-to-day life. She said P has a history of episodes of unpredictable behaviour towards staff and property. She repearted that P is experiencing heightened levels of anxiety around traffic, and in the community; being ‘overfamiliar’ with strangers; engaging in inappropriate and risky contact, often of a sexual nature, with unknown males; and, on occasion, running away from carers. These behaviours are a cause of safeguarding concerns for her welfare and for the welfare of staff (if she becomes hostile). Since a move to supportive housing last year, P’s behaviour and dysregulation, whilst not without incident, seem to have become more stable. The social worker also clarified that P is living in supported living accommodation and not residential care (where DoLS would apply).

In regards to P’s 24-hour, 2-to-1 care, Judge Lieven wanted to understand what P’s feelings were about the this, to ascertain if less restrictive measures could be found. P’s Social Worker said: “Staff try to give her space when she asks not to have 2-to-1 care as she has felt overwhelmed by staff. We want the least restrictive option”. In response, counsel for the LA again maintained that P lacks capacity to decide on appropriate care and again they seemed to contest Dr K’s assessment (that P does have capacity), particularly in the light of P’s recent diagnosis of EUPD, and they again sought permission for further assessments. It was hoped that maybe on further assessment of P,  and reflection from another expert, that all parties may come to some agreement –  they acknowledged that (as the judge pointed out) this could not, of course be guaranteed.

Judge Lieven was clear that “There isn’t going to be a simple answer” that “getting more and more assessments isn’t going to help anyone” and that the diagnosis of EUPD was “a diagnosis of outcome, not cause”, a brilliantly succinct summary of this highly contentious psychiatric disorder. (For further discussion regarding personality disorders and the Mental Capacity Act 2005, see “What does the Court of Protection need to know about borderline personality disorder?”)

I believe the Judge’s decision prevented P’s needs from becoming lost in discussion of on-going differential diagnoses and technical details, which could (further) marginalise P, rather than add anything of real value to her life and well-being, and could only serve to unnecessarily prolong the case. 

Counsel for P’s mother spoke of P having previously resided with her mother, and although P often stated that she wanted to live with her mother again (although this fluctuated), that care at home was not feasible. This was in a large part down to issues of safeguarding where P had a history of “going missing”, “putting herself in precarious situations” and on one occasion fleeing from her carers “in a taxi and has later claimed she was raped”. P’s mother, said her counsel,  was clear that she wanted P to be safe and felt that P did not have capacity to make decisions to keep herself safe. The mother was concerned about the carers’ minimal powers of restriction and that P was purchasing alcohol against advice and wanted the LA to record P’s alcohol use in the care and capacity plan. She also raised concerns about P staying in third party’s homes overnight and having recently self-harmed. She requested an updating statement from the LA.

It was clear that some fine details about P’s safety and care were missing, and that a fuller picture of P’s day-to-day fluctuations in capacity needed attention. I would argue that this would be more beneficial to the needs of P and to her capacity to consent (which could be adversely affected by alcohol and emotional dysregulation) and that a behavioural analysis from P’s carers and family members or representatives would be far more useful than diagnostic assessments from otherwise unknown ‘experts’.

 Mrs Justice Lieven concluded the hearing by saying she “does NOT advise further assessments”.  Instead she called for a half-day hearing with Dr K in order to try to establish greater clarity about P’s fluctuating capacity and loss of capacity when she becomes emotionally dysregulated. She suggested that Dr K may wish to meet with P again before the next hearing, which was set for early February.  No interim order was given but 2-to-1 care and supervision in the home and community was to continue. In her final comments the Judge again remarked that “this is just not a case that is open to a simple answer”.

I appreciated the opportunity to observe this hearing, I found the judge to be decisive, clear and focused on P rather than on technicalities. She concentrated attention on P as an individual and away from endless, and arguably not productive, assessments which were unlikely to resolve the differences of opinion regarding Ps capacity. 

In addition, I believe that dropping the use of the inherent jurisdiction discouraged actions which could have resulted in more controlling and restrictive measures being implemented. P already has 24 hour, 2-to-1 supervision and was stated as finding this ‘overwhelming’ at times. Further analysis, perhaps with the assistance of Dr K, will hopefully ensure that any actions are both necessary and proportionate, not arbitrary or capricious, and are sensitive to P’s capacity at the time insofar as that is practicable.

Fluctuations in capacity, like in this case, may mean that a consensus of P’s capacity can never be definitively achieved. This hearing highlighted to me the importance of the Mental Capacity Act’s Code of Practice:  that capacity should be presumed and that ‘a person who lacks capacity to make a particular decision or take a particular action for themselves at the time the decision or action needs to be taken’ may: a) have partial capacity; b) be temporarily incapacitated (e.g., P’s use of alcohol) c) be permanently incapacitated d) may be capable of making decisions with support. 

I hope that the next hearing will allow remote access or be held online again as I would very much like to hear what Dr K has to add, as I have not heard an expert present in a hearing. I will be interested to see whether any this leads to any clarity or, even if not a ‘simple answer’, perhaps a resolution.

Josie Seydel is a Chartered Counselling Psychologist, Dialectical Behavioural Therapist and Mindfulness Teacher with a background in a diverse range of settings including: primary care services, eating disorders services, women’s prison services, adolescent in-patient services and private practice in London’s financial district. 


[1] I have written this report to the best of my ability with respect to the confidentiality of P.  My quotations cannot be guaranteed to be 100% accurate since we are not allowed to record hearings, but I’ve endeavoured to present as true and accurate an account as possible. Any opinions stated are wholly my own, unless otherwise indicated.

Committal hearings and open justice in the Court of Protection

By Brian Farmer and Celia Kitzinger, 1st February 2023

At a hearing on 16th January 2023, Mrs Lioubov Macpherson – the mother of FP, a protected party in the Court of Protection –  was given a suspended prison sentence for breaching court orders against her. 

At an earlier hearing, Mr Justice Poole had ordered that she must not video or audio record her daughter (or any of the staff caring for her daughter), that she must not post any such recordings on social media and that she must remove those she had already posted. He’d said that if she breached his orders, she might be sent to prison (i.e. he’d “attached a penal notice” to the orders.)  

The judge’s reasons for making these orders, and his understanding of Mrs Macpherson’s reasons for breaching them, plus details describing the videos that Mrs Macpherson posted on social media (now removed) are all laid out in his published judgment: Sunderland City Council v Macpherson [2023] EWCOP 3 In essence, the judge says:

The purpose of preventing the Defendant from posting films of her daughter and naming her through posts on social media platforms, is to protect FP. Not only is it a gross invasion of FP’s privacy to do so but, in this particular case, the nature of the Defendant’s publications about FP is to create the wholly misleading impression that FP is being abused and “tortured” by those caring for her, as sanctioned by a “corrupt” court system.” (§30)

This blog post is not about the hearing itself (see Claire Martin’s account of the hearing [forthcoming]) but about problems with the way the public (including journalists) were informed about it, and the concerns raised for open justice by this committal hearing and others like it.

The Practice Direction

There is guidance about how committal hearings should be conducted in a Practice Direction: Committal for Contempt of Court – Open Court

This practice direction says that open justice is “a fundamental principle” and that “the general rule is that hearings are carried out in, and judgments and orders are made in, public” (§3).  

Committal applications should normally be publicly listed as follows:

FOR HEARING IN OPEN COURT

Application by [full names of applicant] for the committal to prison of

[full names of the person alleged to be in contempt]

§5(2)

Any derogations from the principle of open justice “can only be justified in exceptional circumstances, when they are strictly necessary as measures to secure the proper administration of justice” (§4).

When a hearing is held in private: the court should:

“… notify the national print and broadcast media, via the Press Association’s CopyDirect service, of the fact of the committal hearing (whether it is brought on application or otherwise) when and where it is listed for hearing, and the nature of the proposed derogation; and (2) at the outset of the committal hearing the court shall hear submissions from the parties and/or the media on the question whether to impose the proposed derogation.” (§8(1))

And in all cases, the following applies:

“In all cases, irrespective of whether the court has conducted the hearing in public or in private, and the court finds that a person has committed a contempt of court, the court shall at the conclusion of that hearing sit in public and state: (i) the name of that person; (ii) in general terms the nature of the contempt of court in respect of which the committal order, which for this purpose includes a suspended committal order, is being made; (iii) the punishment being imposed; and (iv) provide the details required by (i) to (iii) to the national media, via the CopyDirect service, and to the Judicial Office, at judicialwebupdates@judiciary.gsi.gov.uk, for publication on the website of the Judiciary of England and Wales. (2) There are no exceptions to these requirements. There are never any circumstances in which any one may be committed to custody or made subject to a suspended committal order without these matters being stated by the court sitting in public.” (§13) 

There is also a requirement to provide a written judgment (§14) and publish it “as soon as reasonably practical” (§15).  Finally, “advocates and the judge… shall be robed for all committal hearings” (§16).

Failing to follow the practice direction

It may be, as the evidence suggests, that the committal hearings concerning Mrs Lioubov Macpherson did not comply with this guidance.  And since becoming aware of her case, we’ve also come across a number of other cases – in the Court of Protection and other courts – where it appears the guidance was not followed. 

In the past seven weeks (not counting the Christmas break), Brian has been aware of seven committal hearings.  In addition to the two Court of Protection hearings before Poole J in Newcastle, there were: a Family Division hearing before Arbuthnot J at the Royal Courts of Justice; a Court of Protection hearing before Judge Beckley in Holborn, London; a Family Court hearing before Judge Evans-Gordon in the Central Family Court and a hearing before HHJ Cope in Bristol County Court.

  • In five of these seven (Poole J (x2)  Beckley, Evans-Gordon and Cope), the case was not listed in accordance with the Practice Direction on committals.
  • In two, Arbuthnot and Evans-Gordon, the lawyers involved seemed unaware of the Practice Direction and unaware of the requirement to notify the press if they wanted reporting restrictions.
  • In Arbuthnot, a barrister and a solicitor-advocate both said they would “prefer” the adult defendants to be anonymised.
  • In the Evans-Gordon case, the only lawyer, a solicitor, seemed to think he was in a private family court hearing. (The judge ticked him off for not being robed). The judge indicated that she would have to rely on my discretion not to report the names of children aired at the hearing.
  • In the Evans-Gordon case, I spoke to three members of Central Family Court staff to point out the error in the listing. None had heard of the Practice Direction. One checked to see whether the hearing was in public or private and said committals were “sometimes” in public.

Holding the Court of Protection accountable 

We’ve recently expressed our concern to Mr Justice Poole about the (apparent) lack of transparency of committal hearings, specifically in relation to the two hearings concerning Lioubov Macpherson (“Luba”).  

We’re reproducing those letters here because many members of the public are anxious about contacting judges with their concerns and we want to show how we’ve gone about it, and also that it can have positive outcomes.  

1.  Letter concerning the first committal hearing (on 8th December 2022)

19th December 2022

Dear Judge

Re: COP 13258625

We are concerned about open justice and transparency in relation to this case (COP 13258625) and would like to ask some questions about the hearing before you on 8th December 2022 in Newcastle and about the forthcoming hearing, which we understand will be on 16th January 2023, also in Newcastle.

PA Media reporter Tom Wilkinson was at the 8th December hearing, and we know that you made a Transparency Order preventing P being identified in media reports of the case.

We understand that the hearing was a committal hearing – an application by Sunderland City Council to commit Luba Macpherson.  

As such, we believe that the terms of the then Lord Chief Justice, Lord Thomas’ practice direction in 2015 on ‘Committal for Contempt of Court – Open Court  should apply. 

However, as far as we can tell, parts of this Practice Direction were not complied with: specifically,  §5(1)&(2) and §8.

Paragraph 5

5 (1) says  “All committal hearings, whether on application or otherwise and whether for contempt in the face of the court or any other form of contempt, shall be listed and heard in public.” (our emphasis)

5 (2) explains how committals should normally be listed: “Application by (full name of applicant) for the Committal to prison of (full name of the person alleged to be in contempt).”

As far as we can tell the Committal hearing wasn’t listed at all until sometime in the morning of 8th December 2022, just hours before it was due to start.  It then appeared on Newcastle County Court  Daily Cause list, not the Court of Protection list (as, too, did another hearing in the same case on 6th December 2022).  We have photographed the listing as it appeared in CourtServe and reproduce it below.  As you can see, it gives no hint that you were dealing with a committal: the words “Committal to prison” do not appear.  The name of the person alleged to be in contempt does not appear.  

Paragraph 8

“Where the court, either on application or otherwise, is considering derogating from the general rule and holding a committal hearing in private, or imposing any other such derogation from the principle of open justice: (our emphasis)

(1) it shall in all cases before the hearing takes place, notify the national print and broadcast media, via the Press Association’s CopyDirect service, of the fact of the committal hearing (whether it is brought on application or otherwise) when and where it is listed for hearing, and the nature of the proposed derogation; and

(2) at the outset of the committal hearing the court shall hear submissions from the parties and/or the media on the question whether to impose the proposed derogation. 

We appreciate that the hearing wasn’t held in private. However, you made an order which prevents the media from identifying the accused person. We would say that must be a  “derogation from the principle of open justice”. We’re not aware that any notification was given to the national media via Press Association’s CopyDirect service. (Times have changed since 2015: the Press Association is now PA Media and CopyDirect is now the Alerts Service.)

Tom also had great difficulty getting into the hearing. He was told by a security guard at the Newcastle Civil and Family Courts Centre that the hearing was a family court matter, was in private, and that he had no right to attend a private family court hearing. 

(We’re aware of several similar recent problems relating to court staff, private signs wrongly being left on doors and listings.  Brian had problems at the Central Family Court in London, when an usher said he couldn’t attend a private hearing, said journalists were expected to give advance warning if they were attending, and insisted that he had to discuss his attendance with a manager.  Celia has experienced signs saying “IN PRIVATE: NO ADMITTANCE” at the two most recent COP in-person hearings she attended before Mr Justice Hayden (both were listed as “in open court”), and private signs were left on the doors at a public CoP hearing before Arbuthnot J on 7th December 2022.  A member of the public aiming to attend left because he thought the hearing was in private and Brian entered the court only after emailing Arbuthnot J’s clerk to make sure that he could do so.  Additionally, a Family Division committal hearing FD22P00427 before Sir Jonathan Cohen was wrongly listed on December 14. The list said the case was in open court but gave no hint that it was a committal. The listing was changed after Brian queried the listing with the judge’s clerk.) 

Our questions are these:

  1. Why did the listing for the committal hearing on 8th December 2022 depart from the directions set out in the Practice Direction on Committal for Contempt of Court?
  2. Why (contrary to the Practice Direction on Committal for Contempt of Court) was no notification given to the national media about the committal hearing on 8th December 2022?
  3. Why (contrary to the Practice Direction on Committal for Contempt of Court) was a representative of the media not permitted to make representation at the outset of the hearing (as opposed to at the end of the hearing).
  4. We understand that there is another committal hearing on 16th January 2022.  Will this be listed and conducted in accordance with the Practice Direction on Committal for Contempt of Court, and if not, why not?

We have considered carefully what may be at issue in this case (and in other committal hearings in the CoP).  On the one hand, a CoP judge makes made a Transparency Order preventing P from being identified, and suppresses publicity relating to relatives of P associated with the case because this is a means of identifying P.  On the other hand, committal proceedings are quasi-criminal, and the starting point is that people should not be given jail terms in secret and the accused should be named.

MacDonald J had the same problem in relation to committal proceedings for a relative of P, Dahlia Griffiths ([2020] EWCOP 46).  In that case, the judge approved an agreement reached with the parties, that the accused could be named but P referred to only as an unspecified “relative” of the accused.

We’re not saying that’s the answer here, but we do think there are arguments to be made before the court decides upon a derogation from open justice that conceals the full name of a person alleged to be in contempt of court – a vulnerable woman who may be sent to prison.  

At the moment, the only story we can write is that a woman who we can’t identify could be jailed – for reasons probably now apparent from the June 2022 judgment (SCC v FP & Ors [2022] EWCOP 30) that has recently been made publicly available – and that she appeared at a committal hearing which wasn’t listed as a committal hearing.

We also think that other media organisations, including media organisations in the north-east, should be notified that there’s an order saying the accused can’t be named, so they can make arguments if they want to. 

Thank you for your attention to these matters and for your concern to ensure open justice.

Celia Kitzinger, Open Justice Court of Protection Project

Brian Farmer, PA journalist

In his published judgment, Poole J accepts that Lioubov Macpherson’s full name should have appeared in the listing of the 8th December 2022 hearing  (§33):  he had (at that point) made no order that it should be redacted.  

2.  Letter concerning the second committal hearing (on 16 January 2023) 

The second committal hearing was listed as shown below (also in the Daily Cause list for the county court and not in the Court of Protection list on CourtServe). Notice that, again, the name of the defendant (Lioubov Macpherson) is not provided.  But this time it was not an oversight.  

At the 8th December 2022 hearing, Mr Justice Poole made an order restricting publication of Mrs Macpherson’s name.  The judge says: 

“Whilst the 2015 Practice Direction does not expressly allow for such a restriction, it does allow for derogations from the principle of open justice ‘in exceptional circumstances, when they are strictly necessary as measures to secure the proper administration of justice. Derogations shall, where justified, be no more than strictly necessary to achieve their purpose.’ The COPR allowed for the reporting restriction and I regard the ordered restriction as being properly justified at the time that it was made.”

So in the cause list making public the next committal hearing, the fact that Lioubov Macpherson’s name does not appear is deliberate.  

 This time, though, the words “COMMITTAL TO PRISON” do appear.

Celia was on annual leave, overseas, and without her laptop, so Brian wrote the next letter to the court.  

January 9, 2023

Dear Judge

Re: COP 13258625

Application by Sunderland City Council for the committal to prison of Luba Macpherson. 

Thank you for giving me an opportunity to make an argument on behalf of PA Media.

Hopefully, my colleague Tom Wilkinson will be at the hearing.

I appreciate that the applicant and respondent have been involved in Court of Protection proceedings and a standard Transparency Order, preventing P being identified, has been made. However, my understanding is that the litigation has now reached a stage where you have to take account of the terms of Lord Thomas’s 2015 Practice Direction: Committal for Contempt of Court – Open Court  https://www.judiciary.uk/wp-content/uploads/2022/07/practice-direction-committals-for-contempt-2-2.do_.pdf#

(I’ve read the Amendments to Practice Directions… published on January 4, 2023. 

https://www.judiciary.uk/amendments-to-practice-directions-supplementing-the-court-of-protection-rules-2017/…

I don’t think they undermine any of the arguments below.)

I think that you have a problem judges commonly face when family proceedings or CoP proceedings reach a committal stage: you are caught between a rock and hard place.

In family proceedings the media is, normally, prevented from identifying the child, therefore if parents are named there is an obvious risk of jigsaw identification of the child. In CoP proceedings orders, normally, prevent P being identified, therefore if a relative is named there is an obvious risk of jigsaw identification of P. You have an additional problem here in that the “accused” is being criticised for making details of the case public in breach of orders.

On the other hand, the then Lord Chief Justice’s Practice Direction clearly indicates that both the ‘accuser’ and the ‘accused’ should be publicly named. In any event, publicly identifying people who face jail terms must be a basic principle of open justice. 

That common law principle of open justice was explained by Lord Atkinson in Scott v Scott: https://www.casemine.com/judgement/uk/5a938b3d60d03e5f6b82ba1f 

“The hearing of a case in public may be, and often is, no doubt, painful, humiliating, or deterrent both to parties and witnesses…”

Judges, in my experience, normally solve the problem you face by naming the “accuser” and the “accused” but notnaming the child or P. 

I would refer you to two cases (one family and one CoP) overseen by MacDonald J, as examples

https://www.bailii.org/ew/cases/EWFC/HCJ/2022/160.html

https://www.bailii.org/ew/cases/EWCOP/2020/46.html

I’m not aware that taking such an approach has led to children, or Ps, being widely identified, or harmed. Certainly, no problem has been raised in relation to any report I’ve written. I’ve never heard it suggested that taking such an approach undermines the proper administration of justice.

I’d urge you to take a similar approach to the approach MacDonald J took in the above CoP case.

We would argue that the media should be able to name the “accused” mother, and the applicant local authority, in reports of these quasi-criminal committal proceedings. (More than that, I think we should be able to report the mother’s age and full address, as we normally would in criminal cases, to ensure that we identify the right person.)

We would say people have a fundamental right to know the names of members of the public who are facing jail sentences, and the names of people or bodies “prosecuting” them – and that right should prevail here.

The Practice Direction does not say that the name of any child or any P at the centre of proceedings should be made public. We’re not proposing to name P, and we’ll happily agree to any ideas anyone has for muddying P’s identification.

There are many things you could do to make P’s identity hard to find: don’t reveal her name, age or gender; refer to her as a relative or family member; be vague about how information has already been made public, simply say mother has put information into the public domain; be vague about how much information has been made public.

I’d also urge you to step into the real world and consider how much harm P is really likely to suffer if her mother is named.

The vast majority of people won’t read your published judgment, they’ll find out about the case through the media. In reality, how many passengers on the Seaburn omnibus are going to read a report in the Sunderland Echo then try to piece together an information jigsaw? Dr Kitzinger and I might have the inclination and ability to track down your earlier anonymised judgment on Bailii, but will the average person really even try? Will they really start searching for the mother’s Facebook and Twitter accounts? Why would they? People have a lot on their minds at the moment. They’re struggling to heat their homes, struggling to pay food bills, war is raging, Prince Harry is on the front pages, Sunderland look like they’re going to miss out on promotion. In reality, this case isn’t big news and I suspect the vast majority will glance at any report, think how sad life is and how lucky they are, then turn to the back page to check the league table. 

Likewise, how many people are really keeping track of what the mother is putting into the public domain?  She’s not the BBC, she’s not Prince Harry. This case hasn’t been the focus of enormous media attention.

I’d ask you to consider what Hayden J said in paragraphs 16, 17, 18 and 19 of the below ruling:

My proposal will obviously create a risk of jigsaw identification; however, I think you can take steps to greatly limit that risk.

Someone always knows the identity of the child, or P. Social workers know, court ushers know, friends of families know, neighbours know. Any report will identify the child, or P, to someone. We’d argue that the test must be “will the passenger on the omnibus, the average person, identify the child, or P?” The test should not be “will anyoneidentify the child, or P.” If the test is “will anyone identify…?” then the media can never report any family case, or Court of Protection case, because someone will always be able to work it out.

The Court of Appeal recently considered this issue, when answering a slightly different question –https://www.bailii.org/ew/cases/EWCA/Civ/2022/1221.html, paragraph 46 onwards.

I suspect that, in reality, only the people who know the family will know the identity of the P, and they must already know.  I also suspect that, in reality, relatives, friends, neighbours etc will already know what has happened in this case – and will probably learn of the outcome regardless of whether or not there are media reports. 

I have no doubt that P can be protected from any risk of teasing or bullying, and I don’t imagine that she will reading reports in the Sunderland Echo or on the internet. 

(We’d normally argue that there’s also a broader issue in cases like this. The public should be told that there are consequences if judges’ orders are breached. In that vein, we’d normally make the “what’s in a name?” argument. Lord Rodger in re Guardian News and Media Ltd and others https://swarb.co.uk/in-re-guardian-news-and-media-ltd-and-others-hm-treasury-v-ahmed-and-others-sc-27-jan-2010/: “What’s in a name? ‘A lot’, the press would answer…” Reports with names have more impact than anonymous reports. However, as I said above, I’m not suggesting that this case is big news and more than anything we’re making arguments on a point of principle. Nevertheless, the case may attract some publicity and it may be that publicity will have some deterrent effect and protect other Ps and children. On that basis, I’d ask you to take account of Lord Rodger’s analysis.)

We’d say that the council should be named, regardless of your decision about naming P’s mother. The Practice Direction says the applicant in committal proceedings should be named. Taxpayers have a right to know what councils do in their name and with their money. If the council isn’t named, council members may well not know their council is involved. They certainly won’t be able to debate the case in public. The local MP won’t know that the council is in their constituency. Not naming the council will stifle political discussion, particularly local political discussion. We’d say limiting debate about such important, and difficult, cases as this, will make it harder for lessons to be learned and is not in the best interests of this P, or Ps generally. 

My understanding is that concerns are centred on the publication of P’s mother’s name. I’m not aware of an argument that naming the council would create jigsaw identification of P, or even create a risk. If P’s mother isn’t named, how could the average person work out P’s identity simply by knowing the name of the council involved? 

I think in any weighing of the Article 8 rights of P, and P’s mother, against the Article 10 rights of the media and the public, the balance here falls on the 10 side. Naming the applicant and respondent would create a limited risk to P: not naming would effectively be secret justice.

If I can help with any other points, please let me know. 

Brian Farmer, Reporter, PA Media

Brian submitted this letter in advance of the hearing.  At the beginning of the hearing, Mr Justice Poole said that he did not need to hear submissions on this matter.  He referred to. Brian Farmer’s “very helpful submissions” and in particular to these passages from Hayden J’s judgment in the family court case: PA Media Group v London Borough of Haringey[2020] EWHC 1282 (Fam):

16. Ubiquitously, it is now recognised that the primary risk to children’s privacy arises in consequence of public postings on social media. Ms Wilson speculates that the crowd funding scheme, organised by the mother with great effect, most probably involved a significant number of small donations rather than a few particularly generous individual benefactors. Ms Wilson reasons from this that many donors might be alerted by the judgment to investigate, by search engine, whether this was the family they gave financial support to. This, it is hypothesised, might lead to a plethora of social media posts which would be difficult to monitor. Ms Wilson also states, that whilst Ms Tickle focuses on the risk to child B by way of “playground taunts” the greater risk probably arises online and insidiously.

17. Mr Farmer considers that these concerns, though intellectually sustainable, are not, as he puts it, “rooted in the real world”. Mr Farmer is a seasoned journalist, he argues the following:

“I don’t think the concerns are enough to justify the Council’s anonymisation. I think, in the real world, the chances of people putting together an identity jigsaw are small and the chances of someone putting together that jigsaw and causing harm, smaller still.”

18. In admirably simple language, Mr Farmer makes the important link between “jigsaw identification” and the likelihood of “harm” (i.e. emotional distress) to the children. He is correct to emphasise the indivisibility of the two. Furthermore, both Ms Tickle and Mr Farmer respectfully suggest that very few members of the public will take the time to seek out and read my actual judgments, relying instead on what they read in the media. I have no doubt, at all, that this is largely true. Whilst it may mean that the public has an incomplete understanding of the case, it also follows that they may not be alerted to the pieces of information which might provide a jigsaw to identification.”

PA Media Group v London Borough of Haringey[2020] EWHC 1282 (Fam):

Similar considerations apply to a case in the Court of Protection”, said Mr Justice Poole.  “In fact, all three Counsel agreed that I should permit the Defendant to be named in reporting of these committal proceedings. I indicated that I too had formed that view.”

Some questions for the Court of Protection

Two Practice Directions have been issued in the past decade: the first issued in May 2013, superseded by another in March 2015. They are written in pretty simple, plain, English and both underline basic principles: justice should be seen to be done and people shouldn’t be jailed in secret.

Yet the evidence of the past two months alone seems to show that the 2015 Practice Direction is not being followed to the letter in Family and Court of Protection committal cases.

Evidence shows listings are done wrongly – and may not even include the words “Committal Hearing”. Defendants are sometimes not named, without any formal advance notification to journalists and without giving journalists the opportunity to make submissions about the reporting restrictions at the outset of the hearing.  

It makes us wonder why this is happening. This is British justice we’re talking about. We refuse to believe that it’s deliberate. Nothing we’ve ever seen in Family courts or the Court of Protection leads us to believe that judges or lawyers would deliberately breach Practice Directions. Is it simply carelessness? Listing staff making errors which are not spotted until it’s too late? Is it a lack of training? Are court staff being made aware of the Practice Direction? Or are mistakes inevitable because everyone is overworked? Do judges and lawyers need a bit of revision, perhaps? Is the problem that lawyers specialise in certain areas but hardly anyone specialises in contempt or committal? Is it the media’s fault? Should journalists be waving more red flags when things go wrong? 

We think these are questions everyone involved should think about.

An inaccurate listing on a court noticeboard might seem a small thing. But in contempt cases, that inaccurate listing might lead to your neighbour being sent to jail in secret. That would be a very big thing indeed.

Brian Farmer is a PA journalist with extensive experience in both the Family courts and in the Court of Protection for more than a decade.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She’s observed more than 380 COP hearings since May 2020.

‘Test case’ on Lasting Powers of Attorney – with troubling delay

By Celia Kitzinger, 31st January 2023

At some point in the future, there may be a time for all of us when we can’t make decisions for ourselves. 

It may come suddenly, as it did for my younger sister, Polly, who was catastrophically brain-injured in a car crash in 2009.  

Or we may lose capacity to make our own decisions slowly, little by little, with a neurological illness such as dementia.  

For some people it comes as a nasty shock to realise that family members are NOT able to make decisions on behalf of an incapacitous adult.  “Next of kin” has no legal meaning in this situation. Instead, if you haven’t made a Lasting Power of Attorney, the state takes over – decisions are made by doctors and social workers, court-appointed Deputies, and (at last resort) by the Court of Protection.

That’s why many of us have appointed someone we trust to make decisions for us in the future, if that’s ever needed.  The mechanism for doing this is a Lasting Power of Attorney – and there are two different kinds: one covers decisions about property and finance; the other covers decisions about health and welfare. (There was no information in this hearing about whether the court is concerned with only one or the other kind of Attorney, or with both.)

I have appointed both kinds of attorney for myself because I was horrified and dismayed by what happened after my sister’s brain injury.  The people who knew and loved her were not able to intervene effectively in decision-making about her health care, meaning that they gave her treatments we were all sure she would have refused if she could. And dealing with her bank accounts and bills and the sale of her house was very difficult.  I don’t want to leave anyone in my family struggling like that again – so I’ve given them the legal power to make decisions. 

My own choices for attorneys are simple. For both ‘Health and Welfare’ and for ‘Property and Finance’, my wife is my attorney: she’s the person I want as my decision-maker.  I trust her to decide (if I cannot) where I should live, what kind of care I should have, and how to manage my money.  If she’s not able to act (e.g. because we are in a car accident together), then one of my sisters is named as my ‘replacement attorney’.  My choices of attorney are recorded on my Lasting Power of Attorney forms and registered with the Office of the Public Guardian.

What I gathered from this short hearing before Mr Justice Peel[1] was that some people are trying to make more complicated arrangements.

The hearing

Matters weren’t laid out in any detail (that will happen at a later hearing) but it seems that some people want to appoint two (or more) attorneys to act jointly (meaning they must agree each decision between them)  –  or jointly for some decisions and severally for others (meaning that they must make certain decisions together and agree them unanimously, but can make other decisions individually).  That’s provided for on the forms,  though the instructions for filling them in do say that if you appoint your attorneys to act “jointly” on everything, this could cause problems, because “If your attorneys can’t all agree on a decision, it can’t be made“.

The forms encourage the person completing them to consider the “jointly and severally” option saying “some people pick this option because they don’t mind their attorneys taking everyday decisions alone but want them to make important decisions together, such as selling a house”.  There’s an example of what this would look like:

“My attorneys must act jointly for decisions about selling or letting my house and may act jointly or severally for everything else”

“My attorneys must act jointly for decisions I have authorised them to make about life-sustaining treament and may act jointly and severally for everything else”.

The forms also offer the opportunity to appoint a ‘Replacement Attorney’ who can step in if the nominated attorneys can’t act (e.g. they’ve died or lost capacity themselves). 

I don’t know the details of what the people whose forms are now before the Court of Protection were trying to do in their applications – but whatever it is, their forms have raised questions for the Public Guardian about whether what they want is compliant with the law, i.e. does the Mental Capacity Act 2005 permit it.  

Counsel for the Public Guardian, Neil Allen, said: “These LPAs have been carefully chosen by the Public Guardian as test cases to illustrate the legal issues requiring the court’s determination and guidance”.  

In his opening summary he said that the people whose applications have been consolidated for this case “have either tried to create a lead attorney or provide for a majority rule or organise for the replacement of replacement attorneys. This raises validity issues, and whether any provisions need to be severed.  There are over 100 similar cases which the Public Guardian is considering and will be affected by judgment in this case”.

I’m trying to imagine what people have done to cause the Public Guardian these concerns, and what that would look on the completed forms (which of course I haven’t seen).  Maybe people have tried to complete the forms to achieve effects like these (examples invented by me!). 

  • “I appoint my three daughters, A, B and C as my attorneys to act jointly and severally but in any situation where they are acting jointly and they can’t agree, I want my daughter A’s decision to be final”
  • “I appoint my three daughters A, B and C as my attorneys to act jointly and severally but in any situation where they are acting jointly and they can’t agree, I want the majority decision that any two of them agree on to be final”
  • “I appoint my three daughters A, B and C as my attorneys to act jointly and severally, and my son D as a replacement attorney if any one of them becomes unable to act. If D is also unable to act, then I authorise A to choose another replacement attorney.”
  • “I appoint my three daughters A, B and C to make decisions jointly and severally. Any decisions about life-sustaining treatment must be made jointly, and other decisions can be made severally. Decisions about where I live and am cared for must be made only by A, and decisions about my religious worship and diet must be made only by B.  

These are entirely invented examples and I’ve no idea whether they accurately reflect the problems before the court.  I will learn more (I hope) at the next hearing.

The case will be heard on 19th April 2023 (probably in person) by Mr Justice Hayden in the Royal Courts of Justice. It’s anticipated that none of the people who actually filled in the forms that are raising questions for the Public Guardian will be there (though they have been informed of the case and told that they can apply to be joined as a party).  Instead, the Official Solicitor will be invited to act as Advocate to the Court.  This role is described in a practice note:

“The Official Solicitor is also sometimes invited to act as Advocate to the Court. A court may seek the assistance of an Advocate to the Court when there is a danger of an important and difficult point of law being decided without the court hearing relevant argument. The Advocate to the Court’s function is to give to the court such assistance as they are able on the relevant law and its application to the facts of the case. An Advocate to the Court does not represent any party.” (Appointment of the Official Solicitor in property and affairs proceedings [2021]) 

At the short hearing I observed, the judge agreed that all the applications could be heard together (only seven appeared in the court listing, but there was reference to nine in court). He also agreed that the Official Solicitor would be invited to act as Advocate to the Court, and that the hearing would be on 19th April 2023 (before Hayden J). Finally, he made some suggestions for improving the wording of the matters that needed to be determined.

Delay

I’m left worrying about the position of the (seven or nine) people who filled in the forms, said who they wanted to make decisions for them, and who are now waiting for the court to decide whether or not their forms are validly made (as well as the “over 100 similar cases” referred to by counsel for the Public Guardian). 

Until these people’s forms are registered and given a special ‘date stamp’ by the Public Guardian, they’re not valid.  If they lose capacity to make the relevant decisions while the Public Guardian is still waiting for a court ruling about whether what they’re asking for is compatible with the requirements of the Mental Capacity Act 2005, then the effect is that they haven’t appointed anyone to make decisions on their behalf, and the risk is that it would then be too late to do so (because they might also have lost capacity to make an LPA). And certain provisions from their LPA may be severed – without them having the chance to consider the impact of this on their LPA choices.

 If this were me, I’d be extremely anxious.  I’d want (at least) to know right away what bit of my form was causing problems, and to be given the opportunity to submit a revised version even if it wasn’t exactly what I really wanted – because that way at least I’d have put something in place to protect myself and my family while the wheels of justice moved slowly on.  I hope they’ve been offered suitable legal advice (for free) about what they might do in this situation. (This wasn’t addressed in court, but I understand something along these lines might have occurred.)

I don’t know when these people submitted their forms to the Office of the Public Guardian but there was reference to the applications having been sent to another judge (HHJ Hilder) in May 2022.  According to the website: “It takes up to 20 weeks to register an LPA if there are no mistakes in the application”, so these people would have realistically expected to have had their attorneys lawfully appointed by October 2022 at the latest.  

As it turns out, they haven’t made “mistakes” – they’ve just said they want to appoint attorneys in ways that the lawyers aren’t sure are lawful.  But they are having to wait a further six months from the date by which they might reasonably have expected their LPAs to have been registered for a hearing in April 2023 which (according to Peel J) will be only a directions hearing, and not a final hearing.  I imagine that a final decision is unlikely to be made until Summer 2023, more than a year since their applications to register their LPAs were made.  And in the meantime, there is a real risk that some of them will lose capacity and find that they don’t have the protection of attorneys in place and that its too late for them to re-submit the forms in compliance with whatever the court decides is lawful.

I’m a bit troubled by the delay”, said the judge.  “I’m just not sure why it’s taken so long. I’m very sorry it has.”

I am too.  

And I hope the Public Guardian is taking appropriate steps to protect the autonomy of the hundred or more people whose advance planning (for care, for finance, or for both) might be very seriously affected by the current uncertainty about the law.

Celia Kitzinger  is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She has personally observed more than 380 hearings in the Court of Protection. She tweets @kitzingercelia 


[1] COP Nos: 13954400, 13954481, 1395439T, 13954446, 13954475, 1395443T, 13954383, 13954498, 13954423

‘Vindicated!’ The experience of P in the Court of Protection

By JH and NB (with an introduction from Celia Kitzinger)

Introduction (by Celia) 

There was an urgent Court of Protection hearing at the end of last year before Mr Justice Hayden.  In this blog post, the person at the centre of the case (JH) describes – in his own words, as recorded by a family member- his experience of the hearing. This is a first! 

The Open Justice Court of Protection Project was set up (in 2020) to support members of the public to observe hearings and to blog about their experience of the court.  We’ve very occasionally published blog posts in which family members describe their experience of cases we’ve also observed (e.g. here and here).  But this is the first time we’ve had the opportunity to publish an account of a hearing by the person most affected by it, the person at the very centre of the case.  

Ethics

It’s really important that the people most affected by the justice system are supported to speak out about their experience – and that the rest of us listen to them.  It’s a vital part of open justice.  But it’s new territory for us.  When JH contacted me (via a family member) and offered to contribute to a blog post, I had to think carefully about the issues involved.  I consulted with other members of the Project team (which includes people with personal and family experience of autism) and put out a call for input via our twitter feed (receiving more than 30 responses from Court of Protection lawyers, social workers, and others). 

I have no reason to doubt that JH has capacity to decide to tell his own story in public and to give consent to publication. In the published court judgment of his case there is no finding of lack of capacity in any domain. He was found to have capacity to litigate, and did so as a Litigant in Person during a hearing of several hours.  

He chose to contribute via an ‘interview’ with a family member.  I was reminded (thank you Daniel Cloake aka @MouseInTheCourt) of the BBC Guidance on working with (potentially) ‘vulnerable’ contributors or anyone who might be at risk of harm as a result of contributing their story.  I’ve read and discussed this guidance with NB, who is JH’s cousin and ‘interviewer’.  She supported JH to tell his story, and will provide ongoing support after it is published.  

After typing up his interview, NB checked it with him and I’ve seen the text message in which he confirms that he is “fine” with publication of his interview, and that he “hopes it helps someone else” to know that it is possible to stand up for one’s rights against (what he experienced as) coercive attempts to impose medical investigations that he did not want.  He was also happy to contribute his story anonymously – as required by the Transparency Order, which was a relief as otherwise I’d have needed to help with an application to vary the Order.

After we’d agreed the text of his interview, NB wrote her own account of the background to the case, and I wrote the first draft of this “Introduction”, to contextualise what JH said in relation to the published judgment.  Then NB read the whole thing – my introduction, her background account, and his story – out loud with JH, checked he was happy with it, and returned it to me with some suggested additions and changes, all of which I’ve incorporated.  Finally, I received an audio-recorded  message:  “I’m just giving you my permission to publish it, and thanks for your support and help. It’s very much appreciated”.  (JH also chose the illustration for this blog post from a selection of four candidate images I sent over for him to look at.)

For JH, the process of telling his story for this blog post has been (he says) “empowering”. He is rightly proud of his role in the Court of Protection proceedings and feels that the outcome of the case has enabled him to be “a free man. Vindicated!”.  It’s a story he wants to tell so that other people who get caught up in disputes with health or social care teams can learn a bit more about how those disputes can be resolved in the Court of Protection – and perhaps they will be a bit less stressed and anxious by the idea of going to court when they realise from this blog post how “friendly” the judges can be.  He also wants to encourage other people to make Advance Decisions: “If you don’t have one of them, you have no chance! If you do, you have some protection for yourself”. 


The case of JH

The case concerned the validity of an Advance Decision made five years before.  (The Mental Capacity Act 2005 deals with Advance Decisions at ss. 24-26.)

The person at the centre of the case, JH, is in his 40s and was diagnosed with what the judgment refers to as “Asperger’s Syndrome (now recognised as Autistic Spectrum Disorder)” when he was 16.  He suffers from gastrointestinal pain and discomfort which has plagued him since childhood, and which now makes it difficult for him to eat.  For some years he’s been consuming only Fortisip high-calorie drinks and mineral water. He now weighs around six stone (says his GP) and has multiple vitamin deficiencies.  Doctors say his life is at risk.

In the past, he’s had lots of investigations, which he’s found intensely distressing, and he has consistently refused colonoscopy and gastroscopy. According to the published judgment (NHS Surrey Heartlands Integrated Care Board v JH [2023]  EWCOP 2):

Such investigations were considered necessary and appropriate by his treating clinicians then, and by Dr W [his GP] now, to enable direct visualisation of the bowel and to allow biopsies to be taken to facilitate any diagnoses of a further range of bowel conditions that may be responsible for his symptoms. It is very clear from the evidence I have read and what from what JH has told me directly, that these extensive investigations of his childhood which necessitated such incessant hospital involvement has left him profoundly anxious and he is now entirely unprepared to attend hospital. Additionally, JH is deeply resistant to any form of invasive medical treatment.” (§2, Re JH)

I’ve been in touch with members of JH’s family since 2020, when JH’s cousin contacted me because JH was feeling “hounded” by health professionals who wanted to investigate his eating problems. I was told they had raised doubts both about his capacity to refuse those investigations and about the validity of his Advance Decision to refuse them.  He was feeling “disempowered” by their “paternalistic” approach. 

With JH’s knowledge and agreement, his aunt sent me a copy of his Advance Decision and details of the concerns raised by the local authority. His cousin, NB, also consulted a lawyer.  Apparently, the lawyer and I gave broadly the same advice about how to make his pre-existing Advance Decision ‘watertight’.  My suggestions included sorting out the date (the year was given as “20027” which doesn’t make sense) and separating out treatment refusals from broader wishes and feelings (which properly constitute an ‘advance statement’ (MCA s. 4(6)(a) rather than an Advance Decision).  I also suggested adding a specific refusal of clinically assisted nutrition and hydration (a feeding tube).  In my view, this was covered anyway by the refusal of “tubes inserted into my body” but I thought refusing the feeding tube should be separately listed since some people (including some doctors) don’t understand that food and water delivered through tubes is considered by law a ‘medical treatment’ (and not basic care).  

These amendments were discussed with JH and he planned to make changes to his Advance Decision (or to redo it) but for various reasons – including the challenges of the COVID-19 pandemic – he didn’t actually do so. So, the Advance Decision before the judge in December 2022 was the original version.  

The case finally came to court well over two years after I’d been alerted to the serious conflicts between health professionals and JH: for years there had been ongoing suggestions that he lacked capacity to make his own decisions, and might have done so when he made his (purported) Advance Decision. It seems to me that JH might have been spared a lot of distress if the case had been brought sooner, so that matters could have been resolved earlier.  It seems that it finally came to court when it did because professionals thought he might die over the Christmas period and wanted to be sure that they would not be held liable for withholding the tests and treatment that JH was refusing.  As the judgment says:

…. whilst Dr W considered that it was feasible that JH had made a valid advance decision in 2017, a court determination was requested due to the stark consequences to JH if investigations leading to potential treatment did not take place, which would include his premature death.” (§2, Re JH)

Typical of Mr Justice Hayden, his judgment conveys a strong sense of the person at the centre of the case:

“Initially, I had formed the impression that JH had led something of a reclusive life, but in fact, it is clear that he sees his family his son, mother and daughter (in particular) on a very regular basis. They are all and each of them hugely important to JH.  attentive, kind, loving family, who bring much warmth into his life. He is a man whose interests in nature and the outdoors can find expression even within the limited confines of his own garden. His enthusiasm for birds and nature is one which he has passed onto his son. He is a keen musician. At 12 years of age, he saved up his pocket money and bought a Fender Stratocaster American guitar. It brings obvious pleasures to JH who plays it every day. He is, from what I have been told, an accomplished guitarist. He is modest about his own accomplishment, but Dr W has told me that JH has played for him and that he considers JH plays very well indeed.” (§25, Re JH, punctuation etc as in published judgment)

The judge was very complimentary about Dr W, the GP, who has been for the last 13 years  “absolutely dedicated to [JH’s] care, above and beyond professional duty or obligation”: JH and his GP have “a convivial relationship and there is obvious mutual respect” ((§4, Re JH)).  He drew attention to the fact that Dr W considered that JH was likely to have had the capacity to make the Advance Decision in December 2017, and “It is important to record that a capacity assessment undertaken in 2017 also concluded that JH had capacity” (§19, Re JH).

The legal situation, as outlined in the judgment is that there is:

“… no obligation on a patient, who has decision-making capacity, to accept life-saving treatment. Doctors are not obliged to provide treatment and, perhaps more importantly, are not entitled to do so in the face of a patient’s resistance. This reflects a mature understanding of the importance of individual autonomy and respect for human dignity”.  (§9, Re JH)

The judgment quotes from several earlier judgments which have established this point, including this extract: 

“Even when his or her own life depends on receiving medical treatment, an adult of sound mind is entitled to refuse it” (St George’s Healthcare NHS Trust v S [1999] Fam 26 cited at §12, Re JH)

The judgment describes the Advance Decision  made by JH in 2017 as being – apart from the muddled date –  “pellucidly clear” in relation to the current decision before the court concerning colonoscopy or gastroscopy.  I agree!  

The judge added that if the Advance Decision had not been valid (or not applicable to these investigations) and he’d been in the position of having to make a best interests decision, he “could not have contemplated a situation in which the envisaged investigations could have been forced upon him” – not least because JH had told Dr W that he would continue to refuse them, that it would need physical restraint to compel him to have them, and that he would feel “violated” by the investigations:

“The strength of his feelings, the consistency with which they have been held, for so many years, and his obvious distress at the contemplation of such an intrusive investigative process would, in my judgement, be brutally corrosive of JH’s autonomy. It would both compromise his dignity and cause him great personal trauma. It could not be reconciled with any concept of “best interests” in the manner required by the MCA.” (§23, Re JH)

There are at least two other published reports about this judgment. Legal commentator Alex Ruck Keene raises issues about retrospective ‘presumption of capacity’ (here) and journalist Brian Farmer, who attended the hearing, produced a report which appeared in the Evening Standard and the Independent (here). Neither of these reports –  nor the judgment itself – tells the ‘full story’.  

In what follows JH’s cousin and then JH himself tell the story of this case from their own perspectives.

1. Background to the hearing: By NB

JH is my cousin.  We spent a lot of time together growing up. Family has always been really important to us. Our Grandmother ‘Nanny Mary’ was from a big Irish family and her door was always open. She looked after everyone and we all looked after each other. 

In 2008 I was working for a local charity for people with profound and multiple learning disabilities. One of our trustees ran a training session on the Mental Capacity Act 2005 (MCA), he was a lawyer and had been involved in writing the Code of Practice for the MCA. I thought it was really interesting.

In 2017, JH’s Mum told me that he was being assessed by a familiar dietician and another less familiar clinician. She and he weren’t sure why –  but I suggested the learning disability team might be assessing his ability to make decisions for himself. They both looked horrified and had no idea that it was a mental capacity assessment. I’d remembered enough of the training to realise this wasn’t how the MCA was supposed to work. JH has made the same decisions around his health for over 20 years, never wavered.

I contacted another lawyer trustee who put me in touch with a human rights lawyer. She suggested completing an Advance Decision and directed us towards the website ‘Compassion in Dying’ for the template. I also called their helpline for advice and spent two evenings reading the whole of the Code of Practice for the Mental Capacity Act.

Then I printed out the Advance Decision forms from Compassion in Dying and gave them to JH to read in his own time. When he was ready, I sat at the computer with JH at the end of the phone and read out the questions to him. I typed up his responses, printed them up and gave the Advance Decision to him to check through and make any amendments. He also talked through it with his Mum. I made any changes and gave them both a final copy to check. I trained as a community advocate in the 1990’s, and knew it had to be JH’s words. I informed JH that he could change the Advance Decision at any time and we could use the same process.

A school friend of mine who had known JH for many years agreed to witness his signature.  She said to me at the time that she couldn’t understand why the team were questioning his capacity as she thought it was obvious that he had full capacity. 

Here is a crucial part of JH’s Advance Decision. It’s also reproduced in the judgment. It shows how an Advance Decision can be used to convey a clear sense of what someone wants.

“If my health deteriorates or if I should collapse and not have capacity to make decisions: 

I do not wish to attend any hospital/ medical setting. 

I do not wish to have treatment which involves inserting tubes into my body, operations, x rays or MRI scans. I am willing to have bloods tests at home and to be weighed. I wish to continue with diabetic treatment and medicines around that. 

I wish to have involvement with G.P, G.P practice nurses, Social Worker and Dietician but no involvement from other team members. 

I do not wish to have any unannounced visits from the Dietician. If the Dietician attends, I wish for the appointment to be pre-arranged and for a family member or my advocate to be present. 

I do not give permission for practitioners to be looking back through historical case notes. 

I do not wish for Multi-disciplinary meetings to be carried out without my knowledge and if a meeting needs to be carried out about my care, I wish to be fully informed beforehand. 

I wish to be fully informed of any discussions between practitioners about my case. 

I would like to be included by telephone or if I am unable to be present or on the phone, I wish to receive an agenda beforehand and written notes to inform me what has been discussed. 

I do not wish to be kept in the dark about my care or for practitioners to talk about my care without fully informing me. 

I do not wish for any assessments to be carried out on me without full written information regarding the assessments. 

I do not wish to discuss my history going back to my childhood treatment. 

I do not wish to make on the spot decisions about my care. The best way to enable me to make a decision is to provide the information and then give me time to think about the decision when I don’t have the pressure of time restrictions”

We requested a copy of the capacity assessment from the Learning Disability team, which was never forthcoming. I was told over the phone by the dietician that the outcome of the assessment was that he did have capacity. It is our view that a lead clinician in the team who had never met JH, later questioned the Advance Decision and his capacity at the time he made it.

Over the years, more and more clinicians within the Learning Disability team became involved. They had meetings about him, without him. The more they pushed, the more JH backed off. Some of them spoke to him like a child. They didn’t listen to him. They were at his door relentlessly. He asked me to phone them to say that he hadn’t given permission for them to attend his house. I called them and they still turned up banging on his door. They asked for a key to his flat. They gained a court warrant (JH still has the copy) resulting in police officers breaking into his flat. He was out at the time and they left a note for him to contact them immediately. As soon as the police officers spoke to him face to face and saw his Advance Decision, they realised he had capacity and left. 

I wish the Learning Disability team members instigating this had stopped for one minute and thought ‘how would I feel if someone treated me this way?’

It seemed as though they were looking for loopholes in the Advance Decision. Unfortunately, none of us had noticed that JH had made a mistake with writing the date. 

Over time , JH put a complaint in about certain members of the team and received a written apology. He took the complaint to the LGSCO (the Local Government and Care Ombudsman). These complaints weren’t highlighted in the hearing!

At this point I connected with Celia Kitzinger and observed a couple of hearings with the support of the Open Justice Court of Protection Project. I read many of the blogs and kept a close eye on the cases which I thought might be relevant to my cousin’s case. One case gave me hope. It was a case before Mr Justice Hayden involving a young man who had been given a colostomy, despite his (unwitnessed)  Advance Decision saying he wanted to refuse anything that would lead to a permanent stoma (which this had). In this case (Barnsley Hospitals NHS Foundation Trust v MSP), his family (like ours) agreed that his wishes were of utmost importance. There was another case where a ‘best interests’ decision was made not to force a feeding tube on someone, even though the young woman concerned was viewed as not having capacity to refuse it at the time: there’s a blog post about that case here: “Just listen to me please”. 

As a family member, I have been appalled at the paternalistic approach of the Learning Disability team and feel that JH was dehumanised by them. At every turn I thought it would be resolved, as to us it was obvious he had capacity and what his wishes were, but they continued to chase him. 

JH’s choices aren’t easy for us to accept, especially for his Mum and Dad and his children.  But others controlling his life and removing his ability to choose what he does would be a thousand times worse. 

He is his own person. He lives independently – near to family. He has a wicked sense of humour and he has such a blunt but lovely way of saying things. I remember when a psychiatrist (the one we suspect of having opened up questions about his lack of capacity) told him she was an expert in autism, JH replied: “So am I. I’ve had it all my life“.

So many decisions of the team were absolutely not in his best interests –  in his view and in the view of the family.  Maybe the Learning Disability team should have brought this to the Court of Protection years back? We were aware of their lawyers checking the Advance Decision a few years ago. Why was his case not referred then?

Now to the hearing, which JH didn’t realise was going to be a hearing until he was on the phone that morning with his Mum (my Aunt) by his side.  He just thought the judge was calling to ‘meet’ him and hear his views.  

He’d messaged the night before to say the judge was calling and I texted back ‘You’re amazing! You can eloquently put your point across. I have faith in you’. I imagine it was to his benefit that he had little time to stress,  but that night sleep did elude him, unsurprisingly. 

The next day I found out that he had represented himself in a five-hour long hearing and had won the case. He is absolutely amazing. It just goes to show what we all knew all along. 

My aunt said she felt like her brain was about to explode when she realised it was an actual hearing but said she had to remain really calm on the outside for JH. 

Most of the hearing is a blur to my aunt, but JH was able to recollect a lot of it and agreed for me to interview him. 

I have to finally add our thoughts about his amazing GP, Dr W. This man is the epitome of care and empathy. He has empowered JH, listened to him, given him time and treated him like a fellow human being. All these things built trust and safety. JH has said he is indebted to him. When JH completely disengaged from the Learning Disability team, I suspect Dr W spent a lot of time dealing with them on JH’s behalf, and this must have been a challenge at times. He spoke up for JH at the hearing with honesty and integrity. Our family and JH himself cannot ever thank Dr W enough. 

2. JH’s account of the hearing (as told to his cousin NB)

NB:  What was your first point of realising the Court of Protection was going to be involved? 

JH:  Dr W phoned at 8:30 on Monday morning to tell me that the NHS was taking it to the Court of Protection. He apologised for the distress, worry and upset.  He then arranged to come out the same day with a mountain of paperwork and explain things.  Dr W said he didn’t think it would be in court until after Christmas or the New Year which would give me time to find a lawyer and he gave me a list of lawyers’ names.  He marked down the recommended lawyers.  So, I thought at that time I had a few weeks to get a lawyer for after Christmas. 

Dr W then called again the following Sunday and said it was going to court next week and he came out Monday morning with yet more paperwork. At 5:30pm on Monday I got a phone call [we think from the NHS lawyer] demanding I get a lawyer and I was told the Judge would call me at 9am on Tuesday, the next morning.  At this point we still didn’t realise that it was an actual hearing as I was told it was just a chat with the judge.  

At 9am on Tuesday morning I was by the phone with my Mum.  Court admin called and told us that it was a hearing, here and now,  and asked where my lawyer was.  I said I didn’t have one.  At the time, I was on a £10 mobile from Tesco. It wasn’t fully charged and had around £10 credit on it.  Court admin wanted to hold the hearing online but I am not connected to the internet,  so Mum and I ended up on the phone with everyone else present in the courtroom. Dr W was also on a phone link.  The phone line wasn’t that great: at times it cut out but we were able to understand the overall themes.  We both took the oath before giving evidence.

NB: How did you feel at this point?  

JH: I felt angry that it had been sprung upon me.  But before the oath I was given the option to delay the hearing to allow me time to get a lawyer and I said I’d just about had enough, I wanted to get the decision over and done with and I still wouldn’t have had the treatment anyway.  My GP spoke up for me nicely.  He was very protective in his attitude towards me and manner. He did everything he could to get them to leave me alone.

NB: How did you find the experience of giving evidence.

JH: By this point I thought I’ve taken the oath and I’m going to tell the truth anyway and if people don’t like it, it’s up to them. The judge didn’t interrupt me. He gave me time to talk, time to explain things. He listened and took notice of me.  He came across as very genuine and understanding of my difficulties.  It felt like he was really listening to me and my voice.  The judge asked me about my family, so I told him.  He asked about my hobbies, so I told him about those too. 

Listening to what the NHS had to say, it felt like it was all about them and what they wanted to do to me. I’ve had about ten years of bullying and harassment and being told to ‘do as you’re told’ kind of attitude. It made me feel like I was worthless and had no control over anything. Like I was a criminal and I was being punished for something. I was ducking and diving and hiding from them and going out all day to avoid them. 

They said my Advance Decision might not be valid because it was from an internet service and they queried the date and thought I didn’t have capacity at the time.  The judge asked how I got the Advance Decision written and who helped me.  I said my cousin got it from the internet and my cousin and mum helped, and my cousin’s friend witnessed my  signature.  I told the judge they were all my own thoughts, wishes and words but my cousin typed it up as my writing isn’t neat.

It felt like every time I had something to say, they produced another piece of paper about me.  My IQ was mentioned and all. They couldn’t find the correct documents for my diagnosis. Also, the judge said he was led to believe that I was a recluse!  Not true!  

The judge asked me if I wanted a summary and decision today and I said yes, today.  Then, they broke for about 30 minutes and cut the phone off.  They asked me to ring back but I said I didn’t have enough credit, so the court called me back and I got the judge’s summary of the evidence and the decision.

NB:  And what was the decision?

The judge said that my Advance Decision was completely valid and that when I made it,  I had capacity.  He said (about the date) that many people make mistakes on paperwork.  As far as he was concerned, what I do from this day onwards is no one else’s business but my own.  The judge asked if I would like to say anything and I said, yes I would.  I said, thank you for your time, your patience, for listening to me and respecting my wishes.  Then it was all over. I was a free man, vindicated.

I am happy with the judge’s decision and his attitude towards me as he was really nice to me.  He came across as a friend, not at all like a judge, all stiff collared!

I was pleased I represented myself as I know myself better than anyone else.  I feel elated now that I never have to worry about being made to have investigations and treatments again.  I hope that no one else has to go through the same harassment that I got from them, and their controlling and paternalistic attitude.  I really hope this helps other people to stick up for themselves. 

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project.  She is very grateful to NB and JH for their contributions to understanding the work of the court and the way it impacts on families.

Observing my first hearing: Plan to terminate contact if father is abusive to carers

By Josie Seydel, 23rd January 2023

On Tuesday 17th January 2023, with encouragement from Celia Kitzinger (thank you!) I decided to observe my first hearing in the Court of Protection. I have been studying the Mental Capacity Act (MCA) 2005 online, (with e-Learning for Healthcare run by Health Education England NHS) as part of my return to practice as a Practitioner Psychologist, and re-registering with the Health Care Professionals Council (HCPC), after a 5-year career break. I have found studying the MCA 2005 surprisingly enlightening and interesting but like so much of my personal experience of study it only really comes alive with ‘real world’ application. 

I actually had no idea that it was possible to observe a Court of Protection hearing and had made the false assumption that these were not open to the public until I was pointed towards the Open Justice Court of Protection Project (by following up on case law referred to in the course). Since the pandemic, many hearings are now online, making them even more accessible. I am not very ‘techy’ so my biggest anxiety was actually about joining via MS Teams and using the software correctly and not accidentally putting on my microphone or camera during the proceedings, but it all went very smoothly and I was able to listen to the whole hearing without any technical issues, even on my ancient laptop.

The hearing before Sir Jonathan Cohen (Case COP 11895778) concerned a 29-year-old man (P) described by counsel for the applicant local authority (in her introductory summary) as having Autism, a Learning Disability and, at times, ‘challenging behaviour’ (one example was given of him ‘ripping his clothes’ when distressed). I had no other background information about the case and none was specifically given. I also had to intuit who was who at the hearing as the barristers were not introduced as part of the opening summary and I wasn’t familiar with them, or court hearings in general to know. However, the Judge was obvious and fulfilled my stereotype! P’s father was expected to attend also.  When the judge observed that “we don’t yet have the benefit of P’s father here”, someone explained that he was often late, and it wasn’t unusual for him not to be present at the start of the proceedings.

The case has, I believe, been on-going for some time (possibly years). At this point, P is receiving 24-hour care in his own home through a care agency. It appeared from reports made by the Local Authority in charge of his care, that he is generally doing well – occasionally going out to the shops or to the park – but his regular, day-to-day activities and access to regular outings (such as day-care centres, education and recreational activities) were not detailed, and the Judge was concerned about this and requested that these be recorded and brought to his attention before the next hearing. 

After some further discussion about P’s general care and welfare, safeguarding issues were raised and requests made for additional powers to be granted to the Local Authority in charge of P’s care. Initially, knowing nothing of the case, I was confused as to the nature of these issues and thought they were about P himself, but it became clear that they actually concerned P’s father. He was described as often ‘kicking off’ and becoming verbally abusive to staff, at times requiring the threat of, or actual intervention from, the Police.  This, it was explained, was distressing to P and to staff caring for him, and there was concern about how to set clear boundaries with P’s father without creating a further breakdown in his relationship with P’s carers.

At this point, 30 minutes late, P’s father made his virtual entrance (by telephone). His behaviour in court vividly illustrated the problems the staff must be facing when he visits P.  For the next 12 minutes he produced a torrent of ‘colourful’ language directly insulting the judge, alongside allegations of staff abusing P, not washing him, not feeding him properly and denying the father access to his son. The Judge remained calm and did not display much of a reaction (apart from one brief wry smile and raised eyebrows) despite some pretty offensive insults! 

The Judge asked P’s father to desist and to stop interrupting, but he seemed incapable of doing so. The Judge warned him that he would be removed from the hearing if he continued to behave in this way and indeed, after a brief, but very feisty 12 minutes of attendance, court staff removed him from the (virtual) hearing.

Despite his challenging attitude, I was concerned that P’s father had raised some very serious allegations and that these might be lost amongst the necessity of dealing with his difficult behaviour in court and towards the Judge. I was assured, in an email later with Celia, who has been following this case for some time, that at least some of these concerns had been raised before and dealt with at previous hearings (though clearly not to the father’s satisfaction). It is an important part of the considerations of this case that, despite his contentious approach, P’s father has a right to be heard and have his concerns treated with due consideration. Disregarding his concerns would be a serious breach of justice, yet his offensive and threatening behaviour clearly needed addressing. 

The Local Authority asked the Judge to endorse a risk management plan enabling staff to terminate the father’s contact with his son if he becomes abusive towards staff.  They made clear that they were not seeking a penal notice in connection with this. The Judge endorsed this.  It seems that the father’s contact arrangements will be further reviewed at a later (final) hearing and in the light of a third party Disclosure Order for a police report about the father’s behaviour toward staff, which was also approved by the judge. 

It concerned me that P’s father did not have legal representation (I’m not sure why, but I made the assumption that this was for financial reasons) and that he could benefit from some emotional support and assistance so that his actions and behaviours do not actually become detrimental to the welfare of his son, which I think appears to be the crux of this case.

At this first hearing I think I was given quite a spectacle. I have a great deal to learn still about the case, the Mental Capacity Act and legal processes, but this was a really beneficial, though-provoking and useful experience and I feel very grateful to have been an observer.  My appetite is definitely whetted for more.

Josie Seydel is a Chartered Counselling Psychologist, based in Devon, with a background in forensic, adolescent, in-patient, and complex mental health care.

Deprivation of Liberty Safeguards: A course for families

By Anna (daughter of a P)

I’m involved in a Court of Protection s 21A application concerning my mother and the origin of this case was a Deprivation of Liberty Safeguards (DoLS) application.

So when I learnt about this course run by Edge Training specifically for family members of people in care homes and hospitals under DOLS, I was interested in finding out more. 

The day before the course (on 8th December 2022), I received an email containing the Zoom link and a copy of the pack of slides for the course. This proved to be very useful. I had a quick flick through them before the course but I also had the slides on my ipad during the course, which I accessed from my laptop, and of course they will be handy to refer back to in the future. I’ve attended a lot of courses where participants have asked whether the slides will be available afterwards, or I’ve had to take screen shots myself, so I appreciated being sent the slide pack in advance. 

I logged on a couple of minutes before the scheduled start time. Normally you sit in a waiting room but this time I was admitted straight away. I heard soft piano music and saw a couple of slides on rotation, informing participants to get in touch with the administrators if they couldn’t hear anything, or hadn’t received the slides, and information about how to ask questions. I could see other participants had joined too, although all cameras and microphones were off. Overall, I found registration and access to the course very efficient and organized, and helpful for participants. 

The course was led by Aasya Mughal, who started by introducing herself and Edge Training. She explained that Edge Training is a firm that provides legal training, particularly in the field of human rights issues, mainly concerning the health and social care sector but also for other organisations such as the police and the military. The trainers come from a range of professions and include judges, lawyers and social workers. Aasya is a barrister and director of Edge Training. 

I was quite surprised when, after her introduction, Aasya asked participants to introduce themselves and why they had wanted to attend. She stressed that the course was not being recorded and all personal details would be confidential, and she made it clear that people should only speak about what they felt comfortable saying. There were only six participants, and the course is always capped at 20, so this ‘personal’ approach is always possible. Everyone introduced themselves and most people put their cameras on to do this. This set the tone for the course, as it was quite interactive. Aasya encouraged participants to ask questions either through the chat or through raising a virtual hand (cameras stayed off whilst Aasya was going through the slides), and she mostly answered them as they came in. This approach was an alternative to going through all the slides and then having questions at the end, and it worked quite well as it meant the questions were relevant to the information on the slides.  

The content of the course was very informative. It covered the legal background to DoLS, some relevant statistics, what it is and who is concerned, the process, different types, criteria, the role of different professionals, protection and rights for those under DoLS, what can happen if procedures are not followed correctly and some other interesting legal information. 

The content could have been difficult to follow for us lay people attending, but Aasya explained it all in a very easy-to-understand way. And she took the time to explain anything that anybody said they didn’t understand. She made it very accessible. 

From my perspective, I also feel that what added to the value of the course was participants sharing experiences and stories, and in this way, we could learn from each other. This wasn’t “overdone”, it was mainly Aasya talking, and it was done in a safe way so that everybody only said things that they felt comfortable saying. This aspect of the course is dependent on the people who attend, but Aasya’s manner certainly helped:  nobody felt pressurized to speak. Some people had positive experiences of the DoLS process and some more negative and it was helpful to discover different perspectives. 

One thing I came away with is that (as I’ve experienced with my mother) families can feel at sea in relation to DOLS and unsupported. The more knowledge gained, the better the ability to navigate the process. This course would be really beneficial to family members whose loved ones are subject to, or likely to be subject to, a DoLS authorization. Most of the participants on this course were a certain distance along the path but it would definitely be useful for people at the start of the process as well. Aasya answered individual questions where possible or pointed people in the right direction to find out more. 

Aasya explained that more courses for families, like this one, would be run if there is enough interest. I for one would thoroughly recommend it for relevant families and I wish I’d had the opportunity to attend it earlier, at the time when my mum first became subject to a DoLS authorization. It would certainly have helped me to understand the whole process and its implications much more. There are still certain aspects that I don’t fully understand but this was not a bespoke consultation for me and I learnt a lot in a short time. I would encourage any families seeking to understand DoLS more to attend future courses. 

The next course is on 20th June 2023 at 2-5pm and there are free DoLS Rights resources if you need information before then (click here). 

Anna is the daughter of a woman who is currently a P in a Court of Protection s.21A application.  She’s not using her real name because she wishes to protect her mother’s privacy, while also hoping that other families can benefit from reading about her family’s experience.  Anna has also observed and blogged about a number of s.21A hearings as a way of learning more, e.g. Accessing a Court of Protection hearing as an observer and A section 21A hearing: Impressions from a veteran observer and the daughter of (a different) P in a s.21A case

“He deserves a chance”? Continuities and shifts in decision-making about life-sustaining treatment

By Jenny Kitzinger, 14th December 2022

Mr P, an active and relatively healthy middle-aged man, had a heart attack at home on 3 September 2021. 

His family, and then subsequently, paramedics, delivered Cardio Pulmonary Resuscitation [CPR]. This was successful, insofar as he remained alive and his heart was re-started. However, he suffered devastating, irreversible hypoxic brain injuries. He has been left in a prolonged disorder of consciousness [PDoC]. This outcome is sadly not uncommon after CPR, a fact which complicates a general public narrative about CPR successes and ‘saving life’.

The medical evidence (from his clinical team and from two independent experts) is that P is currently completely unaware of himself or his environment and has been for the last 15 months. He is in a ‘vegetative state’ (one of the sub-categories of PDoC). There is a very small chance he might, in future, move into Minimally Conscious State minus, another category under the umbrella term PDoC. This slight shift in his level of (un)consciousness is very unlikely to occur. Even if it does it would, for him, simply involve, as one independent expert described, having the ability to feel pain, for example, but no ability to even distinguish between individuals around him. 

His future is likely to involve further physical deterioration (e.g. infections and increased spasticity). His life-expectancy, if current interventions continue, could be seven years. Meanwhile he is at risk of another heart attack or might die because of his increased risk of respiratory infections.

Mr P had not made an advance decision to refuse treatment or appointed anyone with Lasting Power of Attorney for health and welfare. It is, therefore, in the first instance his clinical team and (now) the judge who must make decisions about which of the medical treatments available to him are in his best interests. 

His clinical team is no longer willing to offer CPR or antibiotics for life-threatening infections.

They are apparently still willing to offer clinically assisted nutrition and hydration (CANH). However, they (and independent experts) do not think such treatment is now in his best interests. Efforts to reach an agreement about this with his family (including via formal mediation) has not succeeded. 

The questions before the court in this case were whether it is in P’s best interests for life sustaining treatment (specifically CANH) to be withdrawn, or not (or as more properly described, whether such treatment should continue to be provided). 

Alongside this, the court was also being asked to decide whether the Trust’s proposed palliative care plan is in his best interests.

I was interested in observing this hearing because I have been researching family experiences of having a relative in a Prolonged Disorder of Consciousness for over a decade now and am co-director, with Celia Kitzinger, of the Coma and Disorders of Consciousness Research Centre. We’ve published widely in this area and contributed to guidelines about the care of PDoC patients from the Royal College of Physicians. We’ve also developed resources for families and online courses to support clinical teams with law, ethics and best interests decision-making.

I have been observing court cases for a long time now – and also providing support to families going through them – so I am also interested in how the law, and the conduct of hearings, has shifted over recent years.

In this blog I describe the efforts by everyone involved to try to work out P’s best interests and specifically what P might want in his current situation. This work was done by family and friends on the one hand, and the clinical team/Trust and the Official Solicitor, on the other. Attempts to determine what he might want built on the same evidence (medical information combined with testimony about P’s values and how he lived his life) but different parties had come to different conclusions.

I conclude by reflecting on how this hearing is situated within the context of changing professional guidance/practice and case law over the last few years (including the ground-breaking Supreme Court judgment in Re Y (An NHS Trust & Ors v Y [2-18] UKSC 46).

Who was who in court

The hearing I observed was on Wednesday 7th December 2022 in the Royal Courts of Justice before Mrs Justice Arbuthnot.

The application was brought by the Trust responsible for P’s care, represented by Ian Brownhill of 39 Essex Chambers. The first respondent was P, represented by his Litigation Friend, the Official Solicitor – the barrister was Nageena Khalique KC of Serjeants’ Inn Chambers. The second respondent was P’s eldest daughter (supported by the rest of P’s family) – she was represented by Ben McCormack of Garden North Chambers.

Written evidence had been provided by P’s family and friends and by P’s clinical team. There were also reports by two independent experts (both Consultants in Neurological Rehabilitation). Professor Derick Wade provided a report in January 2022 and Dr Andrew Hanrahan, a jointly instructed expert, provided another independent report in July 2022.

The medical evidence presented in court

The medical evidence was not contested. Neither of the two independent experts gave oral evidence to the court and there was no cross-questioning or direct challenge to the medical consensus about P’s current state or likely prognosis. The level of certainty about his diagnosis and prognosis seemed compelling, informed by knowledge of the nature of the original incident, evidence from brain scans, the fact that it was now 15 months since the hypoxic injury, and evidence from repeat testing over time.

Hearing from family and friends in court

I think this hearing was originally planned to be entirely ‘in person’; however, in the event, it was actually hybrid (due to difficulties experienced by family members in getting to the Royal Courts of Justice on the day). 

Use of technology ensured effective participation from all parties and from people “engaged in caring for [P] or interested in his welfare” (s.4(7)(3) MCA 2005) e.g. a friend who provided oral testimony by video-link. Mr P’s wife and three daughters (also all on video-link) appeared together from their home, with his eldest daughter taking the lead to represent the family and provide an oral statement about her fatherAlthough patients’ relatives can feel that they should be (or want to be) in the physical courtroom, facilitating the option of online connection can be very valuable. Online access allows  family members to support each other while giving evidence from a familiar environment, and avoids additional time and financial stresses at a point when they are often very overstretched and want to be at the bedside.

Everyone in court was consistently committed to ensuring that information about P as an individual was central to the hearing. When the friend due to give evidence had technological challenges joining the hearing, the court allowed plenty of time (half an hour) for this to be resolved and made a point of appreciating the efforts he had put in to participating once he did establish a connection. When the daughter became upset and faltered giving her testimony, the judge gently suggested that the order of witnesses be changed to allow time for her to compose herself. The judge said she wanted to be sure that P’s daughter would be left with no regrets, and would know that she’d been able to communicate what she wanted to in court. 

A point was also made about sharing photographs of P “in happier times”, before his injury. Although not formally filed, all parties were content for these to be shared and counsel for the family gave these to the clerk to pass on to the judge to look at. 

There also seemed to be a very positive relationship between Ben McCormack and the eldest daughter who he was representing. I hope this, and the general approach from the court, meant that the family felt heard, respected and supported.

Witness statements about P as a person

Oral evidence from the eldest daughter: P’s daughter showed great determination in speaking out about her father and painted a vivid portrait of him. I noticed how (like many of the family members with relatives in PDoC I’ve interviewed), she switched between past and present tense when talking about her father, perhaps revealing a tension between acknowledging the extent of what had been lost alongside recognition of his ongoing physical existence and some hope for his return in some form in the future.

“He was an all-round great dad. We have so many great memories”, she said, “He did anything for anyone – he would give the clothes off his back. He is just a great guy”. It is, she said, “really hard to see him [as he is now].” At which point she faltered and could not go on.

Returning to give evidence later, she started by saying that, whatever his current condition, “His presence now is just as powerful as what it was before”. It was clear that even if entirely unconscious, this man is still very much ‘there’ for the family who visit him daily as the much-loved father and husband he has always been.

During her testimony P’s daughter gave more detail about what kind of person he had been. He was, she said, “a loving soul”, a husband who had (until his cardiac arrest) not spent more than one night away from his wife throughout their long marriage. He was also a father devoted to his children, being sure to make time to collect them from school, and – now some of them are older – collecting them from work too, as the whole family continued to live together. He came across as a father committed to raising strong, resilient and independent offspring. He taught his daughters how to plaster walls, change engine oil, and spray paint cars. “Coming from a mixed-race household”, his daughter added, “ he always made sure we were comfortable in our own skins, and true to ourselves”.

A strong theme in the evidence about P was that he would always want to be with his family. His daughter described an incident at work when he fell off scaffolding and broke his leg. In spite of being in great pain, he insisted on being driven to the hospital closer to his family, rather than the hospital closest to his workplace. “Even though he was going through the worst pain imaginable, he still wanted to be closer to us so we could see him.” Her father, she said, would “always fight to come back to his family”.

Although they did not directly dispute the medical evidence, there was a sense that this family found it hard to reconcile what they were being told about P’s condition and what they experienced when they visited him (a very common challenge for PDoC families). During the process of his assessment, we heard the family had shown assessors a video of him. One clip showed him rapidly blinking, for example, which to them seemed to be in response to instruction, but which the experts assessed as a common spontaneous behaviour. Even on the day of the court hearing, the family wanted the judge to see a video too, of what he had been like the day before. Although the video was not formally submitted as evidence all parties were happy for this to be shared with the judge. (For discussion about the use of family videos in other court cases see, “Seeing is Believing? Patient Videos in Life-Sustaining Treatment Disputes”).

The family also seemed to hope against hope that P might defy the odds. “He was a fighter – there wasn’t anything he couldn’t do’, said his daughter. “All we want is to be given more time, he deserves a chance”…and later “All we want is more time. If there is any chance at all, he’d want to take it, to get back to his family”.

Evidence from a friend: The image of this much-loved man was reinforced by evidence from a close friend. Describing P as “like a brother, more than my own brothers”, the friend told the court how Mr P would “never turn anyone away….the generosity of the man just overwhelms you”. He also had huge physical strength and energy. His friend described moving a piano with P; four people on one side, and P on his own on the other, lifting that side all by himself. Prompted by the family’s barrister to talk more about “inner strength”, this friend also underlined that P had great mental strength and a “willingness to do whatever his family needed from him”. Expressing his own difficulty accepting the medical view he added:

“He’s got his eyes open – not focusing on me, but he lifted his head off the pillow which shocked me. I still think he’s in there, fighting. They tell me it’s just muscle spasms, but I find it hard to believe that when he lifts his head. Knowing the man I do, I believe he’s fighting to come out of that coma.” 

He added “I’d like to see him up and about again, to be with his family. I’d like the court to give him that opportunity”.

None of the barristers had any questions for P’s daughter or his friend. They were simply thanked for giving evidence.

Closing submissions and queries from the judge

In his closing submission Ian Brownhill, for the Trust, emphasised that no amount of medical intervention is going to return Mr P to his family. His future is bleak. He’s at risk of physical deterioration, totally dependent on nursing staff to meet personal needs, and at risk of respiratory infection, which, left untreated, are likely to bring his life to an end. He asked the judge to consider whether Mr P would want to live in his current state or, alternatively, be allowed to die with dignity in a hospice surrounded by the family and friends by whom he is so clearly loved.

The judge had some questions for counsel for the Trust. She asked for confirmation that the only reason P had continued to receive antibiotics last time they seemed to be potentially useful was because the family had at that point agreed to mediation (a few weeks earlier, in November 2022) – “so clinicians decided to treat rather than need an urgent hearing or face an unplanned death for Mr P?’ Ian Brownhill confirmed this was correct. She also asked about the current situation about antibiotics and was told by Ian Brownhill that “He won’t be given antibiotics again”. No court order was needed in relation to antibiotics as the clinicians were not willing to offer antibiotic treatment. A similar situation applied to CPR. 

The judge then asked whether the experts were saying there was “no prospect of recovery at all, is that right?” She was told by Ian Brownhill that, if anything, his condition was worsening. There followed some discussion about ensuring that the palliative care plan (should a decision be made to discontinue CANH) was fine-tuned to address P’s and his family’s needs, especially in relation to religion and culture. The plan had been carefully drawn up and, Ian Brownhill said, met the gold standard of clinical care (as outlined in the Royal College of Physician’s guidance on care in these circumstances). However, the family had felt unable to engage with end-of-life planning so far. The judge wanted to be sure this would now happen and expressed concern about, for example, ensuring that P’s large family could be with him at the end (rather than the practical and covid-informed limit of four visitors in the room at any one time, which was the hospice’s general policy).

The court then moved on to hear the closing submission from Ben McCormack. He underlined the fact that family and friends opposed the Trust’s application to withdraw CANH. They had, he emphasised, conveyed a vivid picture of P and the code and principles by which he lived his life: it was a matter of priority to them that this be considered by the court. He also highlighted that the family accepted the medical facts, but they did want to challenge the suggestion that his muscle tone was worsening; this was not their impression from their experience of helping with physiotherapy for him, and it was important to the family that this point be made. 

Ben McCormack also drew attention to P’s religion: “He was a Muslim who believed only God could choose a time of dying. He wasn’t a regular attender at mosque but would have held himself up to be a practicing Muslim”. He highlighted an extract from a written statement submitted by P’s brother: “He would say to me ‘when your time is up, your time is up, until then you don’t give up, no matter what’”. He also highlighted other statements from family about religion: “taking away nutrition would go against his beliefs” (daughter) and “a vital tenet of his faith is the preservation of life” (wife). 

Ben McCormack asked the judge to give due consideration to P’s possible attitude towards ‘chance’. He acknowledged that doctors are unlikely to go into print definitely stating that there is ‘no chance’ of any change, he agreed that the medical evidence was that even minimal change was “spectacularly unlikely”, but invited the court to consider the fact that the family feel that “even if these prospects are really small, this is a man who can and would want, to fight on”. Mr P was an individual who “doesn’t take no for an answer, whether it’s carrying a piano or manoeuvring a steel joist into a building. His family invite you to ensure those core beliefs are accounted for”. 

During this discussion P’s daughter intervened to raise another concern. She described what the family had experienced when P’s catheter had become blocked and “he’s maybe trying to push the water out. To us that means he can feel pain. So, withdrawing nutrition is a really cruel thing to do to someone”. Clearly the family needed to know how any possible pain would be managed if CANH were withdrawn. The issue of how many members of the family might be able to be present at one time was also raised again by the judge and Ian Brownhill asked his instructing solicitor to step out of court to contact the hospice to raise this question with them.

The final closing submission was from Nageena Khalique KC (acting for P, via the Official Solicitor). She outlined Article 2, the right to life and the strong presumption in favour of preserving life – but this is “not absolute and can be rebutted”. She described how reasonable steps had been taken to prolong P’s life over the 15 months since his heart attack and how the MCA Code of Practice indicates that in a limited number of cases treatment could be futile, overly burdensome with no prospect of recovery. She underlined the need for “anxious scrutiny” of what a treatment can do. In this case, she said, there is “a volume of evidence that treatment is not going to change the condition of Mr P…The most that can be expected from treatment is to fend off the infections, pressure sores and worsening contractures”. Quoting from an expert report she highlighted the clear expert view of “what can be expected for Mr P for the remainder of this life”.

“In practical terms ‘there is no doubt’- I pause there – ‘there is no doubt’ about what will happen for the remainder of his life.” 

The words written by the independent expert, she emphasised were ‘clear and unambiguous’ and ‘very stark’. Mr P will not have any autonomy or ability to control any area of his life. He will, by extension, not be the provider he’s always been. He will not have any functional abilities – even to the level of scratching an itch himself. He won’t be able to interact socially “at any level, even at the level of being able to recognise a particular individual”. This was, Ms Khalique KC surmised, something that, “had he had the opportunity to consider” he would be “extraordinarily distressed about”.

Quoting from a joint statement provided to the court by two of P’s daughters, she drew attention to their view that “We wouldn’t want our dad to live in this condition for the rest of his life, and dad would not want that either. But if there is any chance of recovery, he would want that”. She argued that “The whole basis of which the family would want him to continue is based on the possibility of a miraculous event going against all the medical evidence, that he might improve or recover”. There was, she said, “incontrovertible evidence about fixed and extensive” damage to his brain. Addressing the question of what Mr P might wish for in these circumstances she argued that “while the court may accept he’d want a chance at recovery, the court must forensically examine whether there is, in reality, a chance at all”.

Turning to the question of his religious faith Ms Khalique KC quoted from earlier case law and argued that “Religion may well be integral to character but that should not lead to assumptions that P would have taken a particular theological position based on his religion” and that it is “impossible to know what Mr P’s attitude would have been to life being sustained artificially”.

Finally, she highlighted that there was no evidence that Mr P was deriving any pleasure from existence, but that there were some concerns about the possibility of pain. She concluded that for his dignity and autonomy in his final days, it was right for life-sustaining treatments not to be continued. A palliative care plan which allowed him to die with his family around him was now in his best interests.

The hearing concluded with further discussion of the palliative care plan, some discussion about the Transparency Order, and the statement that the judgment would be handed down on Friday. The judge again thanked the family for giving evidence.

The judgment – Friday 9th December 2022

The judgment was handed down the following Friday morning in open court. (It is not yet publicly available in written form but should be posted soon on The National Archives and I’ll add the link when it appears.)

The oral judgment was given online, and everyone (including the family) joined by video-link. 

Mrs Justice Arbuthnot outlined the legal reasoning behind her decision and declared that it is lawful and in Mr P’s best interests for the treating team (a) not to provide ventilation or life sustaining treatment in the form of CANH, and not to provide CPR, and (b) to provide palliative care. 

In handing down this judgment the judge was careful to acknowledge both the kind of man P had been and the family’s concern. She highlighted P’s daughters’ view that withdrawing life-sustaining treatment might “stop what God has written for our dad”. But she said, “The life sustaining treatment delivered thus far has already interfered with what God has written for their father” – and was at pains to point out: “the time of death has nothing to do with the decision of this court”. After CANH is withdrawn: “nature will take its course”.

Execution of this order was delayed until noon on Tuesday 13th December 2022. This was to allow family to consider whether they wanted to appeal (I understand there won’t be an appeal) and to give them time to meet with the palliative care consultant and input into the palliative care plan if they now feel able to engage with this process. 

Reflections: continuities and shifts over time

Since the landmark Supreme Court case of Re Y in 2018, withdrawal of CANH from patients in a vegetative (or minimally conscious) state no longer requires a court application. 

Before Re Y, there were many court hearings at which clinicians and family agreed that withdrawing CANH was in the person’s best interests, but doctors and palliative care teams were unable to proceed without the approval of the court. The decision in Re Y means that decisions about CANH for PDoC patients now come to court only if there is disagreement about what is in the person’s best interests, or the decision is ‘finely balanced’. 

Clearly this case was in court because of disagreement between clinicians and family, and the bases for that disagreement are very familiar to me. 

Like many other families (including those who eventually – years later – ask for treatment to be withdrawn), the family in this case was holding on to the smallest glimmer of hope to stave off the devastating certainty of loss if their loved one died. Like so many people, they also had a belief that their family member was the one who would defy the odds – he is a ‘fighter’ whose sheer determination will enable him to overcome catastrophic brain injury. They also conveyed their strong sense that the person they knew is still ‘in there’, in the warm and moving body, that looks so different from how one imagines a classic ‘coma’.

The hearing was typical of most hearings I’ve observed in recent years, in that the court’s central focus was on working out what P himself might want in the circumstances. 

Mr P meets all the criteria for the diagnosis of a ‘Permanent Vegetative State’ [PVS] (as defined by the RCP PDoC guidelines). The diagnosis of PVS is one which for various reasons, is less emphasised nowadays, in favour of recognising a continuum of consciousness between absolutely none and the flickering awareness of the minimally conscious state, and combining this with a detailed discussion of prognosis. This is a change that comes with pros and cons in terms of family reactions and understanding (CDoCTraining, “Introducing Prolonged Disorders of Consciousness: Unit 3). In earlier hearings,  the suggestion was sometimes made that someone in PVS has ‘no interests’ (an argument made by the Official Solicitor in the Bland case (Airdale NHS Trust v Bland [1993] AC 789). This point was notable by its absence from this hearing (and I have not heard the ‘no interests’ argument mentioned recently at all in court hearings). At the very least, it was acknowledged that Mr P – even if entirely unconscious – had an interest in the manner of his death, and as a devoted family man, he would care about his family’s experience of his end-of-life care, their future wellbeing and how they might remember him. 

There was also no suggestion that Mr P’s values or statements of beliefs should be anything other than core to the decision. Even though there was no evidence of explicit statements about what he would have wanted in his exact circumstances (and no advance decision) a great deal of thought was put into trying to see things from his potential perspective based on what was known about how he had approached life, his faith, his commitment to his family and the code he lived by. It was clear that this would be given significant weight in the best interests balance sheet. This, of course, was not always the case. In W v M, heard in 2011, the judge stated:

“Given the importance of the sanctity of life, and the fatal consequences of withdrawing treatment, and the absence of an advance decision that complied with the requirements previously specified by the common law and now under statute, it would be in my judgment be [sic] wrong to attach significant weight to those statements made prior to her collapse.

I would be very surprised to see a similar statement in a judgment today, over a decade later.

The other element of this hearing that stood out for me was how well-prepared the case was (at least at this stage in proceedings). It seemed clear that Mr P’s clinical team had taken ownership of their responsibilities in relation to best interests and that they had also sought out independent opinion in a timely manner: the first independent expert report was commissioned within a few months of Mr P’s anoxic injury. All the appropriate evidence was in place for the hearing. Although the judge said it was unfortunate that there may have been a delay in enacting Mr P’s best interests because of the mediation (in November 2022), I thought that must have been a hard judgment call for the clinicians trying to work out the best way forward. 

From what I could deduce from the hearing, the action of clinicians in this case reflected what I have seen since the Supreme Court decision in Re Y – which is that clinical teams are increasingly building up the confidence to take responsibility for going through a full best interests process and making every effort rigorously to adhere to the (very clear) RCP and BMA guidelines. It was also good in this case to see explicit statement from clinicians that some treatments were simply not on offer (something which has been more ambiguous in other hearings I’ve observed, where clinicians seem to say that they do not think they should offer a treatment, but would if the judge decides it is in P’s best interests to do so).

Finally, what was evident in this hearing, and I have increasingly observed in other best interests decision-making discussions (both inside and outside the courts) was adherence to the principle that CANH should be treated in law as a life-sustaining treatment like any other and subject to the same best interests processes (as is spelt out by the BMA/RCP guidelines). Alongside this, there seemed to an acceptance that death following CANH-withdrawal might even be preferable to death from, for example, an untreated infection. This can seem counter-intuitive, and certainly challenges the popular discourse around ‘dehydrating and starving to death’ but the suggestions that this can be a relatively ‘good death’ is something supported by family reports to us (see Deaths after feeding-tube withdrawal from patients in vegetative and minimally conscious states: A qualitative study of family experience;  see also CDoC Training: ‘End-of-Life care course: Unit 4, ‘Positive experiences’).

Evidence that death following discontinuation of CANH can be relatively peaceful is also supported by clinical experience. Lynne Turner-Stokes and her colleagues published an invaluable review of ‘experience and lessons’ from the last eight years of decision-making about life-sustaining treatment for PDoC patients in their care. They note that: 

“However sensitively managed, BI discussions regarding elective CANH withdrawal can be very difficult for families, and they require support in their own right. Nevertheless, the feedback from families has been very positive with many expressions of gratitude to the team for supporting a dignified and peaceful death…our experience has been that dying in this situation has often been more peaceful than dying a respiratory death.” 

Understanding of Prolonged Disorders of Consciousness, the care of patients, support for their families, and the law around treatment decisions has undergone rapid evolution over the last decade. Clear monitoring and auditing of patient pathways and decision-making about (dis)continuing life-sustaining treatments is needed, both in the courts and in the clinic, but it seems to me there have been positive developments. I think Mr P’s family can be confident that a huge amount of skill, care, time and experience has gone in to trying to make the right decision, or ‘the least worst’ decisions, in the tragic circumstances in which he, and they, now find themselves. 

Jenny Kitzinger is Professor of Communications Research at Cardiff School of Journalism, Media and Culture. She also co-directs (with Professor Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre and runs online training for healthcare professionals about law and ethics. She tweets @JennyKitzinger

Researching the Court of Protection: Accessing hearings as a PhD student

By Rhiannon Snaith, 9th December 2022 

I’m starting a PhD looking at the media reporting of Court of Protection decisions about life-sustaining treatment. I’m lucky enough to have an ESRC scholarship to do this work, under the supervision of Professor Jenny Kitzinger at Cardiff University. 

As part of my project, I obviously want to study hearings, understand how journalists have access to and negotiate what they can say about a case and look at published judgments, as well as press and TV coverage. 

I hope my work will be useful to the Court of Protection, all those involved in court cases, and to journalists. I also hope it will contribute to open justice principles and to general public understanding of the work of the court

In this blog I want to reflect on the experience of trying to observe a hearing as part of my PhD – and ask for help with this study!

I initially heard about the CoP case (COP 13938884) at around 10pm the night before the hearing was due to happen (on 7th December 2022). It was listed for 10am the next morning before Mrs Justice Arbuthnot at the Royal Courts of Justice (RCJ). It was only at this point that I learned that the case concerned life-sustaining treatment. The court listing did not indicate the subject matter of the hearing (I understand that hearings in the Royal Courts of Justice – unlike COP hearings in the regional courts – never do) – but Celia Kitzinger (co-director of the Open Justice Court of Protection project) had asked on twitter and been informed that it concerned withdrawal of clinically assisted nutrition and hydration. 

At this stage I didn’t know whether there would be an opportunity to view the hearing remotely (it was not listed as remote or hybrid), but as that was the only option for me, it was worth trying to see if online access was possible. So, following the example my supervisor had sent, I emailed the RCJ to request a link to observe the hearing, and cancelled all my appointments for the next day, keeping my fingers crossed I could join virtually.

Preferably, such cases would be good to observe in person but due to the last-minute nature and the fact that a journey to the RCJ would take me up to 5 hours, an online hearing was more feasible. However, I was pleased to learn that a public observer who lived in London was able to get to the RCJ at short notice and we’d be able to have a conversation with him afterward too.

The next morning, I grabbed a quick breakfast, rallied up anything that might be needed including pen, paper, snacks, water etc. and began checking for a link and scrolling through the tips and ‘what to expect’ emails my supervisor had sent me to help prepare for the upcoming observation (if we managed to get in). 

The general rules were to ensure your mic and camera were off, though there is always a possibility that you could be asked to turn them on, which is why it is important to make sure you are appropriately dressed. It is also important to never take any photographs, videos, or voice recordings of the hearing and I was advised not to make any public comment about the case. (Jenny and Celia have live-tweeted from CoP hearings in the past, but Jenny was clear with me that this involved greater skill and understanding than I currently have.). You must also be on your own while observing (unless you’ve previously asked the court for the link to be shared with someone else) and you must not share the link to the hearing with anyone.

Jenny also reminded me that due to the nature of the cases brought to the Court of Protection, it’s important to take care of yourself and take a break, if necessary, at any point during the hearing. However, she advised, it would be best not to exit the video-platform, as there is no guarantee you will be let back in.

The hearing was scheduled to start at 10am, but the link to the hearing did not come through to me until 10.16am. I promptly followed the link and the instructions that came along with it and entered the online conference room. In preparation, I had already ensured that my camera was not only ‘off’ but covered with a sticker and was obsessively trying to check that my mic had been turned off – it was. 

Once I entered the video conference, I was greeted by a black screen that stated ‘No one is presenting’ with a list of names on the lefthand side that told me who was a guest and who was a host: among them I recognised Jenny’s name. Satisfied that we had both made it into the online room, we privately messaged each other (via text message, during which time we ensured our cameras were off and that we were on mute.

Halfway through this exchange Jenny tried to help me by describing which barrister was which by reference to where they were sitting on the benches, as she explained that there had been no introductions (or if there were, we were both admitted too late to hear them). Up until this point I had been under the impression that the hearing had been delayed and I was merely waiting for it to start – but because of her comments I realised Jenny could see and hear things I couldn’t. 

Though I’d followed all the instructions and used the Google Chrome extension, which is recommended, I’d somehow ended up in some sort of holding pen, unaware that the case has started. I exited the online room and attempted to follow the link again – it worked this time and let me straight into the hearing. At this point it was 10.44am so I was really worried that I had missed a lot. But actually, the hearing had been put on hold due to technical problems on the part of one of the witnesses. I was unsure as to who was who, but Jenny thankfully knew some information, even without having heard an introduction herself (e.g., she knew who the barristers were and who they were representing) and she emailed me this and a summary of the bits I’d missed, which made deducing what was going on much easier. I don’t think the hearing would have made as much sense to me without this help. Also, it would have been really helpful to have had position statements, but I gather these weren’t yet available because of issues with the Transparency Order.

At the end of the hearing, the journalist physically present in the court room, Brian Farmer, asked a series of questions about what he could and could not report about the case. This was something he particularly needed to clarify as there was no Transparency Order available. This was really interesting – potentially – and important for my research but I strained to hear what he said as Mr Farmer was, unfortunately, off-mike. The camera was only on the judge at this point, and I had to try to deduce what the journalist was asking from the Judge’s responses.

During the hearing, I began making notes, attempting at first to be consistent with including time stamps (to allow Jenny and me to compare notes easily and to ensure I knew how much time was given to different witnesses etc). Unfortunately, I soon forgot about using time codes in my haste to write up as much as possible, as accurately as possible. In future, I need to find a way to remind myself to jot down the time every 2 minutes or so. This would be beneficial as later, whilst going through our notes, had I put more of the times down both myself and Jenny would know where to go in our notes to compare. 

I made sure that I made both a summary of what was being said (and by whom) and made a note of specific quotes that stood out to me. Following the proceedings was fairly straightforward though, inevitably, there were terms and phrases that I did not recognise or took me a moment to place. I have a growing list of ‘Key Terms’ in a separate document to aid me with this and have researched key aspects of the Mental Capacity Act 2005 which spell out how best interests decisions should be made.

I did find the case itself was upsetting, not surprising for a case where there is disagreement about life-sustaining treatment, but I debriefed with Jenny, and it did seem like the case was well run and the family had a voice. It was good to get a strong sense of the patient, and the lovely and much-loved man he had been, and to feel he was at the centre of the case. 

The hearing was concluded fairly quickly, ending at roughly 12.50pm.  The judgment is on Friday this week, which I also hope to attend. Meanwhile, I’m looking for the media coverage. 

I felt very privileged to have been able to observe this court hearing – but it was only through luck and with a lot of help that I was able to do so, and parts were rather frustrating, from the point of view of a researcher.

A final disappointment was to learn that the Open Justice colleague who’d been going to attend in person, didn’t do so.  He’d arrived at the court room to find a notice on the door saying “Private: No Admittance” and had left the building as a result.   

I can see it is going to be hard to study CoP hearings about life-sustaining treatment – time-consuming and tricky. 

If anyone can help me learn about hearings about life-sustaining treatment in advance, I’d be very grateful, as I hope to attend some hearings in person, and to be able to observe others online.

Rhiannon Snaith has an ESRC PhD scholarship to study reporting of End-of-Life Decisions. She’s just started tweeting @Rhiannon_Snaith and is looking forward to joining in online discussion of law, ethics, end-of-life and the role of journalism. 

Observing a remote hearing in court with the judge

By Celia Kitzinger, 7th December 2022

It was listed as an in-person hearing (COP 13641809) at First Avenue House in London on 28th November 2022.

I was in London for a conference and had the afternoon free, so I thought I would take advantage of the (for me, rare) opportunity to observe an in-person hearing. 

On arrival at First Avenue House (after putting my backpack through the X-ray scanner, phone and lap top out, emptying my pockets and taking a sip from my water bottle), I took the lift up to the 5th floor where the Court of Protection sits.

Court staff greeted me and said the hearing had been “rejigged as a Teams meeting”.  I asked how this would work: should I go away again and find somewhere quiet to sit and watch it via the Teams link?  No.  I would be shown into the courtroom, where Her Honour Judge Hilder would be sitting, and watch her interacting with the lawyers, who would all be attending online, visible on a big screen.

And that’s what happened.

There was a bit of a delay starting, which I think was occasioned by the need to produce a Transparency Order. 

It later transpired that the hearing had originally been expected to be “private” (in which case it had been incorrectly listed).  

We are sitting in private”, said Nicola Kohn, counsel for the local authority. (I wasn’t sure, during the hearing,  who was counsel for which party because, although the judge did a generally very helpful opening summary, it didn’t include which barrister was acting for which party. I’ve subsequently received a copy of Nicola Kohn’s position statement  – thank you! –  which is enormously helpful.)

Since Professor Kitzinger has taken the trouble to come to court,” said HHJ Hilder, “I made a Transparency Order and we are sitting in public”.  And, “just to clarify,” added the judge (turning to address me) “you would have been welcome to attend if it had been a private hearing”. 

It was a slightly surreal experience to be the only person in an otherwise almost empty courtroom, seated opposite the judge and a member of the court staff (an usher? a clerk?).

Normally, observers sit at the back of the court, and even though I knew there wouldn’t be any lawyers in the courtroom today, I somehow couldn’t bring myself to sit on the front benches, in the seats they would normally occupy.  Sitting several rows back was a mistake though – I couldn’t see the screen very well, or read the names of the lawyers on screen. Ironically, I’d have had better access to the hearing if I’d attended remotely like everyone else. With hindsight, I should have asked for the link and could have had it open on my laptop on silent: I’ve done that before – and since! – in hybrid hearings when I’ve been attending in person, and it massively improves the experience.

My engagement with the judge felt slightly awkward too.  Although there was no instruction to “All rise!” as is usual in in-person hearings, I did what the lawyers do in courtrooms and stood up when she entered at the beginning of the hearing – and again at the end when she left.  (This standing-up thing is not practised in remote hearings.)  

I expect the experience of having me in court was slightly odd for the judge too!

The judge introduced the hearing by explaining that KD (the person at the centre of the case) is 18, autistic, and has severe learning disabilities. He does not communicate verbally. He has previously been found to lack capacity to make all relevant decisions.  He lived with his parents until their relationship broke down, and then with his grandmother until being the subject of a care order.  He’s been living in a registered children’s home  – but he’s no longer a child and the focus of the proceedings has been to identify a suitable adult placement for him.  

The last hearing was on 20th October 2022 at which concerns were expressed about the lack of progress and non-compliance with orders.  

The judge had ordered that the next hearing should be listed as “in person”, meaning the legal team from the Bolton area would need to travel to London for the hearing,  “unless the parties could agree that progress had been made and non-compliance issues sorted so as to make attendance in person not necessary”.  And that, said the judge “was only confirmed this morning”.  

Nicola Kohn said there had been “a good deal of cooperation between the applicant and those instructed on [KD’s] behalf”, including a Round Table Meeting “as a result of which the Official Solicitor was satisfied that issues of non-compliance were resolved” – and a subsequent meeting had led to an agreed draft order that was now before the court. 

The judge said she was “fundamentally concerned with the lack of progress in finding KD an adult placement”, since it looked as though nothing would be available until he turned 20.

That was still the case, but the current placement was apparently content to keep him until then – although the judge asked for confirmation of this in writing.

This matter has remained before the court (rather than progressed as part of the streamlined process) owing to the court’s concerns as to KD’s vulnerability and the need for careful planning of his transition to adult care. 

I’m not satisfied it’s appropriate for an adult to remain in a children’s home,” she said, as she tried to explore what was being done to locate an alternative placement – checking whether all placement options, including single tenancy (something that had caused concern previously because of the risk of social isolation), were being checked out. 

There was also some overview of arrangements for KD to go to his grandparents for (unsupervised) overnight visits. They needed appropriate training and to learn about KD’s routines. 

The grandmother wanted to be joined as a party, but the judge asked: “would the needs of the proceedings be better met by inviting [the grandparents] to attend and share documents, without formally joining them as parties, with the risks as to costs” – and that’s what was decided. (It appears they had been joined previously and were discharged, due to lack of engagement.)

The judge also raised questions about the use of a harness – which the grandparents say they never use, but it may be that the placement uses it (that was unclear) and the judge asked for “specific dates as to if and when it has been used since 1st July 2022” and “the learning disability nurse’s view as to its future use”.  

The next hearing will be remote at 11am on 7th March 2022.

This turned out to be a salutary opportunity for me to experience a “judge’s eye view” of a remote hearing.  I can now better appreciate the somewhat isolating and disjointed experience it creates for the decision-maker sitting in the nearly empty courtroom. My thanks to HHJ Hilder for admitting me.

Celia Kitzinger is co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia

“It will all work out”: The limits of a positive attitude in the Court of Protection

By Upeka de Silva and Jemma Woodley, 6th December 2022

We work with Compassion in Dying, a national charity that supports people to make their own decisions about end-of-life care in line with the Mental Capacity Act 2005. 

We promote the rights of capacitous people to document their care preferences using Advance Statements, Advance Decisions to Refuse Treatment and/or Lasting Powers of Attorney for Health and Welfare. 

Recently, we launched a call for guidance on voluntarily stopping eating and drinking at the end of life and so we were keen to observe a case that would potentially address this theme.

Celia Kitzinger alerted me to the case (COP 14017521 Re: EJ, 1st December 2022, Before Sir Jonathan Cohen in the Royal Courts of Justice), having observed the directions hearing last week. Without this, based simply on the Court Listings, I would not have been aware that this matter was before the Court. 

The hearing concerned EJ, a 27-year-old woman who has been diagnosed with rapidly deteriorating Functional Neurological Disorder, which has resulted in her currently suffering from functional quadriplegia and an inability to swallow food and drink. EJ has had contact with psychiatric services since (at least) 2018.  She has a working diagnosis of “Mixed Personality Disorder”, has auditory hallucinations, and her mood dysregulation has raised suspicions of complex Post Traumatic Stress Disorder. She’s been an inpatient in hospital since April 2022, having walked into A&E on crutches, complaining of weakness in her limbs. 

In August 2022, EJ lost the ability to swallow and has been receiving nutrition, hydration and medication through a Naso-Gastric tube (“NG tube”) and/or hydration and (some) medications via a PICC line (an intravenous line).  

Since the end of October, EJ has consistently objected to the NG tube and regularly chews through them or dislodges them by violently shaking her head. 

The Trust has applied for a declaration that it is in EJ’s best interests to have a PEG ( a percutaneous gastrostomy) placed under general anaesthetic, to deliver nutrition and hydration (and medications) directly into her stomach.

The judge, Sir Jonathan Cohen, had to consider the following:

  • Capacity: Whether EJ had capacity to conduct these proceedings and to consent to the provision of treatment including clinically assisted hydration, nutrition and medication
  • Best interests: Whether it is in EJ’s best interests to receive clinically assisted nutrition and hydration, and if so whether this should be via NG tubes (as before) or whether she should have surgery to insert a PEG.

Our first experience of being in the presence of P

EJ appeared in Court, from hospital, by video link. We were pleased that she was part of the proceedings but were soon disappointed to realise that other than her own statement, the only witnesses were clinicians. No family members or friends were called. While we have no doubt that the clinicians sought to keep EJ at the heart of their deliberations, we felt anxious about the potential power imbalance.

While it was useful that the cross examinations were undertaken, not just for the benefit of the judge but for EJ too, on many occasions we felt uncomfortable about EJ hearing fairly blunt descriptions of her behaviour (calling a doctor a “robot”) and making claims relevant to her mental capacity to make treatment decisions (e.g. not understanding that she will die).

We don’t know much about P

Ironically, while it was the first time we had observed a case with P directly involved in court proceedings, it was also the first time that we left feeling we knew very little about who she was and what mattered to her. We learned a lot about the pros and cons of various mechanisms for artificial nutrition and hydration but we don’t know what quality of life means to EJ, or what her wishes, feelings, values and beliefs are.

What we do know is based on what she said, quite forthrightly after all the other witnesses had spoken:

“This whole thing is just bullshit. People don’t listen. Surely, I should get to choose happens to me.”

“I want to represent myself. Even Ted Bundy got to represent himself in court and he was a serial killer.”

“I am articulate and I have capacity spilling out of me. 

Yes, I did call that woman a robot. I’m sorry about that. (To the consultant) You  just spoke a bit robotically at the time. This is a waste of everyone’s time. Everyone has made up their minds already.”

“I don’t want a PEG. I don’t want an NG tube, thank you. Or a PICC line. I want to go home, ideally today. It will all work out – its about a positive attitude – fake it till you make it.”[1]

When EJ spoke, via video link, she clearly expressed a wish to go home and it left us wondering if more could have been done to explore and/or accommodate this wish. At Compassion in Dying we have become very familiar with the desires of individuals to remain in their own homes and avoid going into hospital. While this is not always possible, an honest conversation around this is always appreciated by the people we support. So while the issue for the court was centred around the insertion of a tube, we couldn’t help but feel great frustration for EJ as this strong desire to go home seemed to be overlooked in the deliberations. 

The judgment

As EJ had been unable to demonstrate that she understood the consequences of refusing treatment (that it would lead to her death) and as she also has impairments in the functioning of her mind or brain, she was found not to have capacity to refuse the NG tube or PEG or other medical treatments.

Sir Jonathan Cohen considered carefully that the PEG may lead to short term trauma and a further erosion of EJ’s trust of professionals, but the alternative is death and EJ does not want to die. Rather she remains positive that “things will work out” and so the presumption in favour of life-sustaining treatment weighed heavily in the judge’s considerations.  He found insertion of a PEG to be in her best interests. 

During the judgment, the main screen visible to me as a remote observer was EJ’s. For this, I was grateful, because seeing how she felt mattered to me greatly. I watched EJ nodding approvingly as she listened to the judge repeat her words in his judgment. However, as soon as he authorised the insertion of the PEG, she asked the nurses with her to help her leave the room.

Although deeply apologetic once it was brought to his attention by one of the barristers, the judge misstated EJ’s name multiple times during the judgment which (the barrister reported) caused her much distress. We fear this only added to EJ’s distrust of professionals involved and her belief that the outcome had already been decided before the hearing began. 

On the other hand, we felt optimistic about EJ’s future when the judge ordered that the case should be back in court (before him) for a review in a few months time. He said, given that EJ is “strongly opposed” to the course of action he has ordered, “I think the court owes it to P to consider the matter”. Will EJ have adapted to her life with a PEG? Will the medications she’ll be receiving through it help with her psychiatric illness? Will she be retraumatised and feeling defeated? We worry about counting on resilience and psychiatric medication to make up for the loss of autonomy.

Reflections

At Compassion in Dying, we support thousands of people to complete Advance Decisions to Refuse Treatment. The people we support tell us how relieved they feel knowing that these documented wishes matter, clinically and legally. In this way, the Mental Capacity Act 2005 is incredibly empowering. 

When we support people to plan for their end-of-life care, we strongly recommend that they spend time explaining who they are as individuals and what quality of life means to them. Observing cases in the Court of Protection has reinforced how important this is for ensuring that decisions are truly person-centred. 

So, we both struggled today. We didn’t know what truly mattered to EJ.  We heard her objecting in no uncertain terms to the treatment being proposed but we don’t know why she felt this way. We understood that the risk of withholding artificial nutrition and hydration could be death, but hearing from the Consultant Neurologist that another person in a similar situation didn’t need a PEG made us question whether there was no other way to more closely align treatment with EJ’s preferences. 

We appreciate that it would be very difficult for clinicians and judges to take a path that would put EJ’s life at risk. Yet, the trauma of her autonomy being overruled, and the loss of trust in professionals and in her own agency are not insignificant considerations. 

The complexity of decision-making in this case reminded us of how important it is to never over-simplify matters relating to treatment and care, life and death. 

Upeka de Silva is the Policy and Advocacy Officer at Compassion in Dying and tweets @de_upeka

Jemma Woodley is Information Support Officer at Compassion in Dying and tweets @JemmaWoodley2

Compassion in Dying tweets @AGoodDeath


[1] Quotes based on contemporaneous notes as recording is not allowed. They are as accurate as I could make them but unlikely to be 100% verbatim.

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