Court considers how to operate against patient’s will

By Daniel Cloake, 2nd August 2021

This report concerns a case (COP 12132507 In the Matter of “AB” ) before The Hon. Mr Justice Hayden sitting remotely on 20 July 2021.

The subject matter of the hearing was presented like this in the Transparency Order:

  1. This application is listed for hearing at 10.30 am on 20 July 2021. The court will consider the following issues in respect of serious medical treatment and make consequential orders:
    • A) Whether AB lacks capacity to make the decision about amputation of his leg and his wider medical treatment, care and support;
    • B) Whether the treatment proposed, including the pre, peri and post-operative procedures, in AB’s best interests including in particular whether it is reasonable and proportionate to:
      • i) Sedate and, where necessary, restrain AB in accordance with the draft care plan in order to facilitate the proposed amputation is reasonable and proportionate;
      • ii) Administer medication covertly in order to sedate AB.
    • C) Whether it is lawful for AB to be deprived of his liberty in hospital, pre, peri and post-operatively.

The court was told, in an introduction prompted by the judge, that Mr AB is a man in his fifties who suffers from a form of schizophrenia and from type 2 diabetes. 

Ms Ulele Burham, the lawyer representing the Local Health Board, explained that complications arising from the diabetes had made it necessary to amputate his lower leg.  Mr Justice Hayden continued the introduction describing it as a:

“… very serious condition.  The bone had become weak and had dislocated.  Because of the erosion of the bone and changes in the shape of his foot and ankle, gradually bit by bit over the past few years had caused his mobility to rapidly decrease.  Even 40 yards to the shop required a taxi.  He has from time-to-time accepted some treatment for example casting and antibiotics but he was resistant to intervention as his perception is that his condition will cure itself.  There is no salvageable bone left in his hind foot.”

Ms Burham explained that Mr AB objected to the amputation on the basis that the injury to his foot could be cured by drinking Diet Coke.  We were told it was the view of the Health Board and Mr AB’s family that these “delusions” as to self-treatment were caused by his form of schizophrenia. 

The judge said in no uncertain terms that it’s “not an exaggeration to say he will die if he doesn’t receive treatment”.  Mr Justice Hayden considered that Mr AB’s resistance to treatment didn’t mean he wanted his life to end – and the determination with which he went to the shops “shows he has quite the fight in him”.

The Judge continued describing Mr AB’s background.  How in 2018 he was given a flat in a supported living environment, something described as a “sea-change in his life” which “manifestly transformed his life beyond measure”.  Throughout his adult life “repeated release and readmissions had become a vicious cycle” and it was “sad and ironic that this physical problem occurred when his mental health was more stable”.  The judge said he was “enormously positive about where [AB] is living” which meant AB “is well placed to confront” these problems.  This sentiment was echoed by the family who, in a written letter to the court, said they felt “[AB] is resourceful enough to enjoy life in a wheelchair once he has got used to it.

The letter, which we were told was jointly written by four of his siblings, was an “important document” said the Judge.  “So often when evaluating the best interests it is the lay evidence that best illustrates the individual” he concluded.  “I don’t want the family to think I have made the decision as a paper exercise.  The medical evidence is clear to me. I’d like to hear from one of the family members”.

The court heard from Ms C, who told the Judge that writing the joint letter was “quite an interesting experience for us to talk together and recall memories from when [AB] was 8 and how he wouldn’t wear his glasses”.  We heard how Mr AB’s mental health had started to deteriorate when he was aged 15 after his father had died but how the family had collectively supported him – “We’ve all discussed how we talked to him.  I spoke to him every night for 2 years.” she said.

Ms C described the change in Mr AB that occurred when he was placed at the supported living placement – “that’s really been very positive for him.  He was ready to start living a life… he talked with the excitement that an adolescent might have, about having a girlfriend or watching a football match.”  “Not necessarily only the privilege of adolescence!”, the Judge replied.

Ms C explained that Mr AB “is not a suicidal person, he may have schizophrenia but he’s not depressed. An amputation is the worst possible outcome apart from all the rest.  The longer it takes the worse his prognosis.  There is no doubt it has to happen and the sooner the better.

Mr Justice Hayden replied: “What’s so striking about [AB] is that he is surrounded by an incredibly supportive family who don’t just say the right thing but have followed through with support.  But many people in his position don’t have that support and how much it improves the quality of his life.  I congratulate you on the support you give him. I would like to pay tribute.  What I am worried about is that I would be sanctioning a drastic treatment, which he would struggle to understand why it had been ordered and I’m highly alert to maintain trusting relationships with those around him.”

Ms C replied that maintaining that trust is “virtually impossible to do” and it was “inevitable” that Mr AB would “think his leg has been stolen”.  “No question he will be really quite angry, but that is the nature of his mind.  An awful decision to have to make”.

Mr D, another of AB’s siblings, gave his opinion.  “I think that he will be upset and shocked.  But if given enough attention and support I think he can be supported into managing it”.  

The court considered how the procedure should be carried out given Mr AB’s objections.  It was discussed whether medication could be hidden in his Diet Coke.  Ms Burham submitted that this plan would not be in his best interests because “if he were to discover he had been medicated in a covert way, there’s the same problem of mistrust.  There’s no guarantee he wouldn’t be able to taste it – he knows quite well how it should taste.” 

Ms Burham explained that it’s the view of the Official Solicitor and the family that the best plan with the “lowest risk of failure” should be physical restraint without sedation.

Ms Bridget Dolan QC, acting as Mr AB’s litigation friend via the Official Solicitor, told the court that the proposed “restraint care plan was rudimentary” and they had only just heard of the involvement of a private company to action the restraint.  She explained that Mr AB has been subjected to forceful medication before, so “the experience wouldn’t be unusual”.  In any event it would be “preferable to see a restraint plan that wasn’t described as a first draft”.

Raising his last concern, the Judge asked to speak to Dr E who is responsible for carrying out the operation and who had written a detailed report for the court.  Due to her unavailability we instead heard from Dr F, a colleague of Dr E who – the court was told – was very familiar with the proposed plan for Mr AB.

Mr Justice Hayden recalls a case where he had ordered a below knee amputation to be performed but what took place was above the knee.  Quite why is still “a matter of investigation”.  Suffice to say this had “very very significant ramifications for their future mobility” and prevented the use of prosthetics.  “What I want to be utterly clear about, is why I can be confident this is an amputation below the knee” the judge says.

Content with the response from Dr F, the judge described the report prepared by Dr E as a not only a model report but a “paradigm” and asks that his thanks be passed on.

Concluding the hearing, Mr Justice Hayden told the parties that he hopes “all goes well” and encourages them to contact his Clerk with news of the outcome.  It is understood the operation was due to take place on Friday 23rd July 2021, some 3 days after the hearing.

And what was the agreed restraint plan I hear you ask?  Well, with an echo of the court’s reputation of being a #secretcourt sounding loudly, the parties were told to discuss the plan in private and submit the agreed order to the Judge for approval. 

Daniel Cloake is a blogger and news gatherer with a keen interest in law and the justice system. This post was originally published on his own site, “The Mouse in the Courtroom” (where you can read his many other blog posts).  He tweets @MouseInTheCourt

Photo by Roland Larsson on Unsplash

Life-sustaining treatment contrary to his best interests: Lessons from a supplementary hearing

By Jenny Kitzinger, 30 July 2021

The hearing I attended at the Court of Protection on 15th July 2021 (Case No. 1375980T before Mr Justice Hayden) was unusual in that it was described by the judge as a “supplementary hearing”. I’d not come across this type of hearing before, so was interested in the format and process as well as its substantive content.

Supplementary hearings are uncommon and it was hard to find out much about how they operate. Although not formally defined (e.g. in a Practice Direction), a lawyer I approached for advice when writing this blog told me about a few other cases where a supplementary hearing had been held. The aim in each case was to pick up on the issues that were identified as important, but which didn’t need to be resolved to actually answer the question before the judge in the original hearing. 

Judgments from previous supplementary hearings address, for example: 

These cases are summarised by 39 Essex Chambers here and here.

The supplementary hearing that I observed was prompted by what happened to GU – a severely brain-injured patient who had been sustained in an unconscious state for several years, despite assertions from family members (including wife, sister, brothers and several adult children) that this was not what he would have wanted – and despite his treating team apparently also not believing ongoing treatment to be in his best interests. The only area of dispute was that one family member, the patient’s eldest son, had profound moral objections to withdrawing clinically assisted nutrition and hydration (CANH). 

The judge’s decision about this patient’s best interests was made back in June 2021. Mr Justice Hayden decided that CANH was not in GU’s best interests. After judgment, all life-sustaining treatment stopped and GU was allowed to die. (My blog about that case is here). 

The point of the supplementary hearing held in July 2021 was to examine why this patient had been treated contrary to his best interests for so long – and to look at how other patients might be protected from this happening to them. This seemed like an invaluable opportunity for the Court of Protection to address some of the underlying problems in this area. 

I was particularly interested to observe this supplementary hearing because this is a family I had supported to help them in getting this case to court. This is one of many families that we (my colleague and sister, Professor Celia Kitzinger, and I) have been involved with as part of our work with the Coma and Disorders of Consciousness Research Centre. We also often support families in best interests decision-making about CANH that often never get as far as court: see my blog here

I was also keen to watch the supplementary hearing because I’ve often felt frustrated watching cases that do get to court where it’s apparent that there’s been lots of delay (Kitzinger and Kitzinger, 2017), but judges invariably focus narrowly on the best interests of the individual patient going forward. This usually means that exploration of any past problems or ‘lessons learned’ have a relatively low profile.

Who contributed to the supplementary hearing? 

The barristers in court were Debra Powell for GU via the Official Solicitor, and Mungo Wenban-Smith for the Clinical Commissioning Group (the applicant in the case). Both had been at the original hearing. 

They were joined at this supplementary hearing by Amelia Walker, counsel for the Hospital (It is possible that the judge will give permission for the Hospital to be named, but I have not yet had this confirmed, so I anonymise it here). 

The Hospital had not been a party to the original hearing and it was unclear (at least to me) whether or not the Hospital was now joined as a party for this supplementary hearing. 

The only witness sworn in during the hearing was the CEO of the Hospital. 

The patient’s eldest son and his brother were also present: both remained as parties to the case on the paperwork and both spoke briefly during the hearing. 

“An ethos at odds with best interests decision-making”

The hearing opened with the barrister representing the patient via the Official Solicitor highlighting the need for further investigation:

In the assessment of the Official Solicitor, there was a complete abrogation [on the part of the Hospital] from considering properly, or at all, if it was in GU’s best interests, and therefore lawful, to continue to give him an invasive medical treatment…. That is a failure to put P at the heart of decision-making and a failure to accord P his rights.”(Debra Powell)

The atypical nature of this hearing and the role of those involved was signalled as this barrister went on to say: 

Our position is unusual. Since GU sadly died, peacefully, on 26th June, our involvement in protecting his best interests has come to an end. But the Official Solicitor’s position is that where there is disagreement about P’s best interests then, by some means or another, that dispute must be resolved in a timely way – to do otherwise compromises the best interests and dignity of a patient. It risks a situation, as here, where GU has been treated for hundreds of days – nearly 3 years – when this is not in his best interests.” (Debra Powell)

A concern that these failures in care were linked to the Hospital’s “ethos” took centre stage from the start.

The judge quoted from an email sent to a family member by the Head of Continuing Care at the hospital. It stated: “we are not at [the Hospital] about to prevent any resident from having their basic rights of food and hydration.” The judge said this statement suggested there might be “a philosophical driver rather than a protracted procedural issue behind this delay” in considering GU’s best interests. This was a possibility that, the judge said, needed to be confronted “with courage and uncompromisingly”. 

Further evidence provided by the hospital seems to have added to the judge’s concern rather than reassured him.

Taking a few minutes to read the hospital’s position statement during the course of the hearing (it had only just been submitted), the judge described it as “A realistic acknowledgement of the delay as well as an ambitious plea of mitigation for it.” 

He then turned to another document the hospital had submitted some days earlier which he found problematic. He explained to counsel for the Hospital:

 “There is a philosophical disconnect between that document [original information from the hospital] and your very carefully crafted submission [the position statement] – but the two come cheek by jowl and I think that requires explanation.”

Mr Justice Hayden proceeded to read out and criticise various statements from the material provided by the hospital. 

  • The hospital had written: “We understand there has been a suggestion of some delay in decision-making regarding GU”. Hayden J commented: “Where it says ‘some delay’ it requires to be identified that this was a minimum delay of 3-4 years. It rather minimises the magnitude of the issue here“.
  • The hospital document stated “we would not lightly initiate proceedings in circumstances where there is a disagreement”. Hayden J commented that this is “reversal” of the legal situation. He seemed completely taken aback by this statement – not least because his own guidance makes clear that it is precisely when there is disagreement that court proceedings should be initiated. 
  • The notion that disagreement might inhibit clinicians from referring the case to court and ensuring the patient had the benefit of legal representation was robustly rebutted by the judge. Disagreement among family members about a particular course of action, he emphasised, “doesn’t make a jot of difference if the hospital identifies it as being in P’s best interests.”

Mr Justice Hayden gave short shrift to the suggestion from the Hospital barrister that perhaps guidance about when to bring a case to court was unclear. Commenting: “I didn’t have a sense that anyone had read my guidance. I don’t see how I could have expressed myself more unambiguously’. 

He singled out the Hospital’s own description of a potential conflict between its ethos and best interests decision-making about CANH for particular scrutiny. The judge read out a passage from the Hospital’s submitted documentation where it described its ethos (as a centre for rehabilitation and long-term care) as one where:

 “… often we can expect our patients to live out long lives, during which they will be comfortable and if possible happy. Withdrawing life-sustaining treatment is not immediately aligned to that ethos and though staff are aware that there are circumstances when the withdrawal of CANH is an appropriate course of action, that is not something which many staff are comfortable facing, unless they have to.” 

Mr Justice Hayden described this as “a very troubling passage … not least because it was written knowing this case was being heard.” He underlined that:

 “There is one person who counts and that is P. When you allow it [staff feelings and values] to filter in, you risk, as here, doing harm. And that is what I want to stop…. 

The fact that staff may have ethical problems withdrawing CANH can never be allowed to eclipse P’s right to have it determined by a court, represented by the Official Solicitor .… It is, with respect aligned with the ethos of care for patients. It is not disjunctive from it, as the author of this document suggests.”

By the time the Hospital’s CEO was sworn in to give evidence, it was clear that a certain amount of repair work was needed. The CEO was quick to acknowledge the unacceptable delay in referring GU’s case to court and to assure the judge “we will completely adjust our policy and our operational policies accordingly”.

The CEO indicated that steps had already been taken to improve the hospital’s approach to best interests decision-making about CANH and he expressed the Hospital’s future commitment to following Mr Justice Hayden’s (2020) guidance about when to apply to court

The CEO also indicated there were plans to produce leaflets for families and to undertake staff training. 

Having been part of teams that have worked on such material for years, I can only hope the CEO for this Hospital looks at the existing information and training made available by the British Medical Association [BMA] and Royal College of Physicians [RCP]. There is no need to reinvent the wheel. For example the RCP working party report on Prolonged Disorders of Consciousness includes a detailed chapter on “Practical decision-making regarding starting or continuing life-sustaining treatments”. The BMA and RCP have also created a series of user-friendly additions to national guidance about CANH including, for example,

The CEO went on to make various attempts at mitigation – including explaining that the offending email quoted by the judge was sent by “a middle manager”: it did not, he claimed, reflect the official hospital position. He also suggested that mistakes made in 2018 (in failing to deal with family concerns about ongoing CANH) were perhaps related to the fact that this was very soon after certain legal changes. He referred in particular to the “Re Y” judgment in the Supreme Court (the judgment which made clear that there was no need to go to court before withdrawing CANH if robust procedures had been followed and there was no doubt or dispute that continuing it was not in the patient’s best interests). This led to the following exchange (which, like other quotations in this blog post is captured as accurately as possible through note taking, since recording is not allowed):

CEO:       In 2018, when we were digesting the ruling of the Supreme Court we certainly did err on the side of caution – and I guess with hindsight too much on the side of caution.

Judge:     What do you mean?

CEO:       A number of relatives expressed concern about whether there would be a rush to withdraw CANH against their wishes. It died down quite quickly, but at the time our nervousness would not have been about keeping someone alive unlawfully but ending their lives unlawfully, so there were a lot of checks and balances

Judge:     Mr X, this isn’t the situation at all – there was never any obstacle to going to court if treatment was against the best interests of the patient and compromising their dignity.

Reminding the Hospital’s CEO that the “Re Y” judgement did nothing to change the duty of clinicians to act in the best interests of patients, Mr Justice Hayden went on to say that “this can’t come as a surprise to you – that would require amnesia of a decade within the profession”.

When the CEO indicated that he was taking on board and digesting what the judge had said, Hayden J responded: “you may be absorbing it, but this is something the hospital should have absorbed a decade ago”. He concluded: “I’ve formed the view that on these issues [the Hospital], for all its excellence in rehabilitation, was a long way behind the curve”.

Litigants in Person – the need for full involvement

My only disappointment in this hearing relates to the problems experienced by one of the family members – a litigant in person – who wanted to contribute. 

The patient’s eldest son (who had opposed the withdrawal of CANH) was able to attend the entire hearing and was offered the opportunity to ask questions of the Hospital CEO. He emphasised his support for the Hospital and admiration for the care they’d provided: “I for one will carry on donating to the hospital because of what they’ve done for my dad, and how they’ve treated me, and how they’ve been when I visited my dad.”

The problem was experienced by the patient’s brother, EU, who’d represented the rest of the family in trying to get CANH withdrawn. Like his nephew, he is full of praise for the physical care given to GU, but he is very critical of the Hospital’s approach to best interests. It was he who was particularly keen to contribute to the investigation of the causes underlying delays in reviewing his brother’s treatment.

EU had been told at the end of the original hearing that there’d be a supplementary hearing and Mr Justice Hayden emphasised that he’d be welcome to attend this. However, EU was excluded from further correspondence about the case thereafter and when he emailed in an attempt to find out when the hearing might happen or how he might be involved, he did not receive a reply. 

He only learned about the date of the supplementary hearing about 48hrs before it was scheduled to be heard and it was only later that he discovered that he still counted as a ‘respondent’ and could have submitted evidence – but the deadline for this had passed. The hearing also unfortunately clashed with a medical appointment which he had no chance to rearrange due to the short notice. This meant that he had to leave the court before the hospital CEO gave evidence and was unable to ask him any questions. 

The Court of Protection often has to work at great intensity and speed, but it seems the parties with barristers in this case had access to information that the Litigants in Person did not. This was potentially a detriment to the court process. In particular it would have been useful if all the parties had received the draft order after the original June hearing, which included information that would have been invaluable to the family in preparing for the July hearing.

Talking to the patient’s brother after the supplementary hearing it was clear that this was very frustrating for him. He had intimate knowledge of the challenges from the family perspective as he’d been fighting to have GU’s best interests addressed about CANH over several years. He could have provided additional information from correspondence with, and meetings at, the Hospital – some records of which appear to have been mislaid by the hospital or at least were not included in information provided to the court. 

At one point, just before having to leave the hearing, EU asked for permission to address the court: as usual, Mr Justice Hayden accommodated this, always being keen to ensure families are heard. It was then that EU took a few moments to highlight the existence of paperwork from a meeting he’d attended in August 2018. At this meeting, a doctor recorded the information that the majority of the family believed CANH should not continue and she also made recommendations about how colleagues at the Hospital should initiate a best interests review: these plans were never followed through. EU believes there was active obstruction. 

Although pleased he was able to make this intervention, EU did not have the chance to make other points he’d wanted to raise. These included:

  • the fact that senior management staff had been copied into a crucial email thread – part of which Mr Justice Hayden had read out in court – so the ‘excuse’ that the offending email represented an isolated ‘middle management’ view was unconvincing. 
  • that the “evasion” he felt he’d encountered in the Hospital and the lack of accurate documentation when he tried to address questions of best interests was a major obstacle (“in contrast to the reams and reams of detailed documentation of every other aspect of my brother’s care”)
  • and, that, in his experience, not only did none of the clinical team take responsibility for best interests decision-making about CANH, but the whole atmosphere made even considering CANH as a best interests decision “almost unthinkable”. For many staff, he said: “it’s not within their psyche, they don’t even think that way.” 

He remains concerned about other families in the hospital who might never have been asked about their relative’s wishes (or who are perhaps left with the burden of the decision, rather than clinicians taking responsibility). 

He is also critical of what he suspects may be a potential “conflict of interests” given the large amounts of money going to the hospital from CCGs for every patient. He would have liked to ask the CEO about the funding model on which the Hospital might depend. 

I do not think the evidence and questions EU would have introduced would have made any substantive difference to the judgment in this case. However, perhaps there are lessons here about how Litigants in Person can be briefed on court processes and included in correspondence leading up to hearings.

Reflections

The supplementary hearing (which lasted around 2.5 hours) was a thorough and detailed engagement with what the Hospital had done to GU, giving insight into some of the wider issues that affect patient care in many hospitals, rehabilitation centres, and care homes around the UK. 

The judgment may help to address a widespread failure to provide clinical leadership in best interests decision-making about CANH. It could be used to challenge the medical passivity around CANH decision-making in some units where, unless families push for it, the question of whether it is in P’s best interests to continue CANH is often never revisited or reviewed. 

The supplementary judgment may also help to galvanize clinicians who have become frozen in the face of family conflict and sometimes see the court as an option to be avoided at all costs. It may help them to see that not only do they have a duty to refer intractable cases of dispute, but that in fact (as many of the blogs published by the Open Justice Court of Protection Project demonstrate), the court can be an excellent forum for achieving a just resolution that keeps P’s interests at the heart of the decision.

EU is hugely grateful to the Official Solicitor and to the Judge for the way they addressed his brother’s immediate needs for justice in the original hearing and also how, in the July supplementary hearing, they unpacked crucial areas where change was needed. He hopes one outcome might be to create a “legacy” for his brother – prompting improved best interests decision-making for other patients. He believes the judgment may help to ensure that what was done to GU, and to GU’s whole family, is prevented from happening to anyone else.

I hope he is right.

** Postscript **

Previous judgments in the Court of Protection have also drawn attention to the problem of the “ethos” of  units delivering care – in particular to the way this “ethos” can sometimes conflict both with the law, and with respect for P’s prior values and beliefs. 

As in this case, it is a problematic “ethos” that is sometimes implicated in long delays in referring disputes to court.  

This is illustrated very clearly in this reported case:   A Clinical Commissioning Group v P (Withdrawal of CANH) [2019] EWCOP 18. 

In that case,  all of P’s family consistently stated that she’d want to refuse ongoing life-sustaining treatment but: 

“… staff felt that any decision to discontinue CANH in relation to P could apply equally to all patients at the Unit. More generally, Ms PL (Clinical Lead at the Unit) [stated that] she and her staff would not want CANH withdrawn, … not particularly because they felt it was against the best interests, but because “… they are all ‘pro-life’ in general…’ [para 26}

It took several years before this case reached court.  The judge, MacDonald, J, concluded that “Whilst the ‘pro-life’ approach (as they themselves describe it) … is a valid point of view … I am satisfied that it is contrary to the clearly expressed view of P before she lost capacity” (para. 69)

As with GU it turned out that the P in this case had been treated contrary to her best interests for a very long time.

Perhaps a ‘supplementary hearing’ after that case (in Spring 2019) might have helped to prevent what subsequently happened to GU.

I wonder, too, whether the Hospital that treated GU could benefit from learning what the nursing home in this earlier case has done since the hearing to address the shortcomings in the care provided to P – and to ensure that, since the judgment, other residents have been treated in compliance with the law.

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

Image created for the Coma and Disorders of Consciousness Research Centre by Tim Sanders (https://www.timonline.info)

Capacity for Litigation, Residence and Care: Hunger-Striker (WA) back in court

By Jo Beswick, 28th July 2021

On Friday 9th July I observed the third in a series of hearings we’ve covered before Mr Justice Hayden concerning WA (COP 13617268). 

The first time, a year ago on 9th July 2020,  I was one of a number of observers who co-authored a blog about the case (here): there is also a published judgment.

A subsequent hearing, on Tuesday 25th May 2021, was blogged about by Gillian Loomes-Quinn (here).

The man at the centre of the case, WA, claimed asylum in the UK in 2009 and was granted indefinite leave to remain on 23rd July 2009.  According to the published judgment:

 “WA had escaped from his native Palestine where he reports having suffered sustained physical abuse by members of Hamas in consequence of his refusal to act as a suicide bomber. It is said that his Grandmother had been able to provide a bribe to a Hamas soldier to facilitate WA’s escape. His Grandmother was also able to finance and arrange for WA to leave the country. He travelled to Italy, where he initially claimed asylum. In Italy, WA and one other boy were allocated a foster carer. That proved to be a disastrous placement, both boys were physically and sexually abused and the other boy was ultimately killed, having been kicked to death by the foster carer. There is a good deal of corroborative material to support these accounts, not least evidence of extensive injury, including stab wounds and a crudely amputated index finger. WA has suffered post-traumatic stress disorder and depression“. (https://www.bailii.org/ew/cases/EWCOP/2020/37.html)

WA was placed with foster carers in the UK.  They have a close relationship with him and he refers to them as “Mum and Dad”.

WA had been told by his Grandmother before he left Palestine that his date of birth was 29th December 1994. The subsequent age assessments concluded that WA was five years older than he believed himself to be. The Home Office determined that WA’s date of birth should be 19th April 1989. It is this date that now appears on WA’s biometric records.  As Hayden J reports in the earlier published judgment: “For WA the removal of his date of birth is perceived as a fundamental violation of his own rights and an assault on his identity.

In September 2020 WA’s application to have his biometric age changed to the age he believes himself to be was refused by Upper Tribunal Judge Pitt. His appeal against that decision was dismissed by the Court of Appeal on 12 January 2021 (here). WA is currently awaiting a decision from the Supreme Court as to whether or not he has leave to appeal. 

As we reported in the first blog, WA launched a hunger strike somewhat over a year ago to seek to persuade the Home Office to change his date of birth to the one that he believes to be accurate. This led to the first Court of Protection hearing, since doctors wanted to administer clinically assisted nutrition and hydration to preserve WA’s life.  

At the July 2020 hearing, Mr Justice Hayden determined that WA did not have the mental capacity to decide to refuse clinically assisted nutrition and hydration (his hunger strike is “a maladapted response – an attempt to regain control as a result of the trauma he has suffered”) so it was for the Court to make decisions on his behalf.  However, it was very important not to coerce him.  So, despite the fact that he lacks capacity to decide for himself about clinically assisted nutrition and hydration, it should not be forced upon him.  

Hayden J also found that WA did have litigation capacity and is therefore able to instruct his legal team (rather than being represented by the Official Solicitor or an Accredited Legal Representative).  

The issue before the court today was: given the poor state of WA’s health (due to his hunger strike) where should he be cared for? Should he remain with his parents at their home with appropriate home carers and respite care, or should he move into a specialist residential care home? (No capacity assessment has been undertaken regarding decisions concerning his residence or care.)

The issue today – care at home or a nursing home

Mr Justice Hayden said early on that the issue today was centred on the place of care for WA. 

At the previous hearing, WA was in hospital following a suicide attempt (described by Hayden J as a “cry for help”) but was medically fit for discharge and he has since been discharged to his parents’ home.  

The hearing had initially been triggered by a request for a package of home care and for respite care for WA, to support his parents – described in the last hearing as “visibly exhausted and emotionally drained.

But it was made clear at the beginning of the hearing that WA has said that he wants to go into a nursing home, and has specified locations distant from his home town. He believes that his parents have done enough for him, and he no longer wishes to remain living with them.  

Hayden J read out part of WA’s note to him: “I would rather choose to go into a nursing home until God takes my soul”.  According to Mr Justice Hayden, “Speaking with absolute candour, I have the sense that he is letting go – that he doesn’t want any more treatment.”

WA was represented by Arianna Kelly of 39 Essex Chambers. As noted, he has previously been found to have litigation capacity and so is able to instruct his legal team directly (instead of via the Official Solicitor or an Accredited Legal Representative).   She did not represent WA’s current position on residence and care (his wish to go to a care home) but instead argued for a home care package. 

Miss Kelly: “Today seems to be a day where he’s taking a view like that.  In the last 24 hours he has been feeling quite low, and a bit hopeless. But most days that’s not the case.  Last week he was quite clear he wanted to remain living with his parents at home, and was open to the idea of having some carers come in.  I do not think he is letting go of his life.  His mood is not the same from day to day”.  

WA’s evidence

When the question arose about WA giving evidence, the judge asked if WA would prefer to do so without members of the public present, but his counsel said that WA was happy to speak in front of everyone because he “was hoping to draw more attention to his cause”. 

He was seated on a sofa with his mother and was visibly very distressed.  He talked about how hard it had been for him in the hospital, and how badly he felt he had been treated.  At various points he was crying and it was sometimes difficult to work out what he was saying.  “All I want is to get my identity back and live my life” he said at one point, “They have taken my identity and my soul”.  He talked about his pain: “Pain, in my heart, pain in my leg, pain in my arm, pain in my stomach –  I cannot deal with the pain anymore”.  

Sobbing, he said: “It’s better for me to give up, I am in pain. It would be best to die far away from Mum and Dad. I don’t want them to see me suffering any more.  They are suffering along with me.  I want to go far away and die in peace.  There is no other way but to die.  I cannot do this anymore, really I can’t.  They can collect my body when I’m dead”. (WA)

It was very hard to watch.  His mother, too, was crying – wiping his tears, holding his hand, trying to calm him. Afterwards the judge said, “That took a lot of effort and energy to tell me. I think we’ll just have a few minutes break.”

Mother’s evidence

After a few minutes break, Mr Justice Hayden said to WA’s mother:  “one of the reasons WA wants to go into a care home, is because he think you and his dad are exhausted by having to deal with his physical pain and emotional distress.  I know this is very difficult for you, but what do you say about that?

She replied by re-emphasising her absolute commitment to WA:

It’s a big responsibility to have children.  If they become ill or distressed in any way, most parents step up to the plate.  While WA is not our child by birth, he came to us 12 years ago.  We recognised the pain he was in.  We stepped up to the plate. We’ve looked after him. We’ve protected him.  And there is no stepping back on this.  We really truly believe that his life is worth something.  I’ve had to say, ‘it’s me that’s looking after you, not you that’s looking after us’.  I do not want to step away from my responsibilities.  You take children into your home and create an environment where you hope they will be able to recover.  I’ve worked so hard. I’ve turned myself inside out for him, and it’s so distressing that that Home Office won’t help.  This young lad doesn’t want very much.  Just his date of birth, his identity.”

She worries that in a nursing home, the medical procedures risk triggering memories of the abuse in Italy, and re-traumatising him.  One example mentioned earlier in the hearing was the use of suppositories for pain release – his refusal of this method of pain relief is directly associated with the sexual abuse he suffered.  

So it was clear that although WA was now saying that he wanted to go into a care home, neither his mother nor (apparently) his own legal team, supported him in that position. 

Questions of capacity – including litigation capacity

Mr Justice Hayden earlier ruled that WA does not have subject matter capacity in relation to decisions about clinically assisted nutrition and hydration.  The significance he gives to his date of birth (an “over-valued idea”) obscures his capacity to make a decision about tube feeding. 

There has been no assessment of WA’s capacity to make decisions about residence and care, but my understanding of WA’s counsel’s position is that WA does have capacity to make these decisions – and that, like anyone else, his decisions may change from day to day (without this necessarily being evidence of ‘fluctuating capacity’).  

A key issue was WA’s capacity to conduct this litigation.  Having ruled a year ago that WA did have capacity to conduct litigation, Hayden J asked for this to be reassessed. 

The problem was that WA’s counsel,  Arianna Kelly, was taking the position that WA should have a home care package, whereas WA himself, in court today and in a note sent earlier to the judge, said he did not want a home care package but wanted to move to a nursing home. 

The note included these sentences, read out in court by Hayden J: “I’ve chosen this path because I don’t want my home to become a care home. I don’t want to be forced to have care at home”. 

At the moment, that’s his own filed position”, said Hayden J.  “I’m suffused with sympathy for your position, Miss Kelly, but I can’t allow the court to be in a position where the advocate is saying, ‘well this is what he says today, but what he really means is something different’”

Mr Justice Hayden continued:

The oral evidence he gave today is consistent with his written statement, and not with your position.  You are trying to present what he says as part of a wider picture, but that conflates the role of lawyer with that of other professionals.”

Later he said: “There is a difference between the case advanced by WA’s advocate and the case advanced by her client in writing.  I am profoundly uncomfortable with Miss Kelly’s view of what WA’s position is and what WA tells me it is.” According to Hayden J, “The trouble is that Miss Kelly has found herself in an invidious position.  She finds herself submitting very lucidly that what WA says today and in his statement on the last occasion, expressly, is not in fact his wishes.”

It is fairly common in the Court of Protection for counsel for the protected party (P) to take a position that is distinct from – and may be opposed to – the position adopted by P themselves.  (See “Litigation Friends or Foes: Representation of ‘P’ before the Court of Protection“, by Alex Ruck Keene, Peter Bartlett and Neil Allen.) But this situation, if it occurs, is when P has been found to lack litigation capacity and is represented via the Official Solicitor.  That is not the case here.  This P (WA) has been found to have  litigation capacity and is instructing his own legal team.  

Noting the manifest discrepancy between what counsel for WA was saying and what WA himself was saying, there was some discussion about whether in fact WA has litigation capacity and it was agreed that this should be looked at again.  

Hayden J also noted that WA “doesn’t want to be in court proceedings”, that there is “a crushing weight of litigation distress that I would like to minimise if we can” and asked “whether we actually need to litigate at all”. 

At some point another barrister, Emma Sutton appeared in court (“parachuted in” is how Hayden J put it) and it was agreed that she would act as “advocate to the court” for the next hearing on 28th July 2021 – and it was also decided that there should be an expert report available for the next hearing about whether WA has capacity to make his own decisions about residence and care, and whether he has litigation capacity.  

 Jo Beswick is a Senior Lecturer in the School of Law, Policing and Forensics at Staffordshire University. She tweets @DrJoBeswick

Covid vaccination contrary to parents’ wishes

By Celia Kitzinger, 27th July 2021

On Tuesday 13th July 2021, a judge ruled that JS, a fifty-year-old man with a severe learning disability, must be vaccinated against Covid-19 – notwithstanding the firm objection of his parents, who believe that their son’s learning disability was caused by the triple vaccination for smallpox, diphtheria and polio he was given as a baby. 

The parents are not “anti-vaxers” – indeed, both have been vaccinated against Covid themselves –  but they believe that JS is particularly vulnerable to harm from vaccinations and that the Covid vaccine “may cause him more damage”.  

The hearing (Case no. COP 13758986) was before District Judge Glassbrook sitting in Northampton County Court. (These cases are no longer heard only before Tier 3 judges, see para. 35 https://www.bailii.org/ew/cases/EWCOP/2021/31.html)

I also observed the directions hearing (with different counsel) before the same judge four weeks earlier on 14th June 2021. The judge took some pains to ensure that the final hearing was “reasonably speedy” following the directions hearing because “if he’s to have the vaccination, it had better be soon: without it, on the applicant’s case, he’s at continuing risk”.   Both hearings were via MS Teams.

The applicant was the GP Practice, represented in the final hearing by Conrad Hallin.

The protected party, JS, was represented by Joseph O’Brien via his Accredited Legal Representative.  

The parents appeared in court as litigants in person.  

Is JS at risk of covid infection?

Until January 2018, JS lived at home with his parents. Since then, he’s lived in a specialist placement for people with learning disabilities and complex needs.  His mother said: “the only reason we put him in a home is so that he has a place to live when we’re no longer around.  It doesn’t affect our responsibility for him at all.  He’s been coming home every weekend”.

According to counsel for the GP Practice, JS is at risk of covid (as we all are) but this risk is increased by his age, his sex, his severe learning disability, and the fact that he lives in a care home.  It is also increased in part because he is “very sociable”:  prior to the pandemic he attended a day centre four days a week, and he enjoys nightclubs, bowling, swimming, and the local boating lake.  

This description was later contested by the parents.  His mother said:

There’s not been enough investigation of JS’s lifestyle.  ‘Social’ means a very different thing to JS than to another adult in this society.  He’s quite protected in the environment that he’s in – everywhere he goes he’s with at least two carers.  He needs assistance with walking, for balance. If he’s sat down, he will stay sat down.  He won’t be using public transport: if he goes anywhere, it’s in the protected environment of a minibus.  So he has very little contact with a wider public.  When people say he’s ‘socially active’ that makes it sound that he’ll go into supermarkets on his own. I don’t want to put words into people’s mouths, but he won’t go into supermarkets. If he goes to a disco he won’t be standing up and dancing, because he can’t.

Later, she said, “He likes going out, but he doesn’t socialise because he can’t” and when Conrad Hallin said, “He enjoys the company of other people”, his father replied: “At a distance.  He’ll be sat down on a seat, and if he sees children playing, he smiles – but he doesn’t go up and talk to people.

His mother was clear that “I’m not querying in general about how virulent the virus is, but I’m querying how likely it is that JS is going to get it.”

The issue of whether or not, in fact, JS is “sociable” and what that means for him was repeatedly raised as a relevant consideration in making the decision about vaccination.  According to his mother, “JS’s particular lifestyle means he is protected from the wider community” – he doesn’t socialise with strangers, the staff at the care home are all vaccinated and regularly tested.  His father pointed out that he’s been theoretically “at risk for the last 18 months and he could have caught it  – and he hasn’t” – which he puts down to “good management of the care home”.  

The GP Practice and the Accredited Legal Representaive, on the other hand, were concerned about the risk to JS from care home staff (especially with the cessation of covid restrictions from the following week, and the spread of the new Delta variant) and the possibility that, without vaccination, JS would be stopped from doing activities he enjoys (like swimming) which require close proximity to staff who might be carrying the virus.

Capacity

There was no dispute as to capacity.  His mother said at the directions hearing that it was “pretty obvious that he doesn’t have mental capacity”.  But the judge noted that “the COP3 [capacity report] isn’t quite as full as one would ordinarily anticipate” and asked for another capacity assessment in time for the final hearing. The subsequent assessment confirmed that  JS is not able to understand information about the vaccine – despite various attempts at conversations using Mencap easy read vaccination cards, picture and signs as well as words.  A decision was, therefore, required in his best interests. 

Wishes and Feelings, Beliefs and Values

As part of a ‘best interests’ decision, it is necessary to take into account the views of the protected party (s. 4(6) Mental Capacity Act, 2005).  It had  “proved impossible” to ascertain JS’s wishes and feelings about vaccination.  

Apparently, JS is “quite amenable to venepuncture” i.e. having a vein punctured as part of a medical procedure such as to draw blood (this was mentioned by the judge towards the end of the hearing), “so it’s said he’s unlikely to object to being vaccinated, but the idea in the event that he does is that someone should hold his arm to make sure he can be vaccinated”.  This was confirmed by JS’s mother, who said, “you’re not going to have too much trouble vaccinating him: you might have to hold his hand, but he will smile; that’s not our concern.”

As the judge said, JS “may not understand whether the needle is for taking something out or putting something in” so not objecting to the needle is not the same as not objecting to (or agreeing to) vaccination as such.

Counsel for the GP Practice speculated on “the beliefs and values that would be likely to influence his decision if he had capacity” and “the other factors that he would be likely to consider if he were able to do so”  (s.5(6) Mental Capacity Act).  He argued that  “it would be unlikely for any adult to wish to be at risk of severe disease and death” and took the position that JS, if capacitous, would be that hypothetical person of legal fiction, the ‘reasonable man’:

“It is reasonable to consider that any person with capacity who was at heightened risk from Covid-19 would wish to minimise the risk of serious disease and hospitalisation through vaccination, and would be willing to accept the miniscule risk of harm from the vaccination.” (Conrad Hallin, Counsel for the GP Practice)

The parents took the opposing view that it would be reasonable for JS, if he had capacity and understood the damage that had (they believe) been caused to him as a baby by the triple vaccine, and then by the measles vaccine, to decide not to risk another vaccination with the real risk of vaccination damage. 

My own view is that claims about what someone who’s never had capacity would decide if in fact they did have capacity and were acting reasonably are rather nonsensical.  They tell us more about the speaker’s own wishes, feelings, beliefs and values (and what they think ‘reasonable’)  than those of the protected party.

The Position of the GP (and Accredited Legal Representative)

The GP Practice (represented by Conrad Hallin) had “felt compelled” to bring this application to court because “as long as he remains unvaccinated, JS is at serious risk of covid, including serious disease, long-Covid and death”.  Balancing the “minute” risks of vaccination against the very severe consequences of Covid – especially for someone with learning disabilities – the GP Practice came down firmly on the side of vaccination. The Accredited Legal Representative took essentially the same position.

In support of the position for vaccination, the GP presented evidence from the medical literature that “approximately 14% of all people with covid-19 develop severe respiratory disease with T1RF [Type 1 Respiratory Failure], and a further 5% will become critically unwell, many of whom will require intensive care”.  Extrapolating from this, if he were to contract covid, JS would have around a 1 in 7 chance of developing severe respiratory disease and at least a 1 in 20 chance of requiring intensive care – these estimates are not adjusted to take account of JS’s learning disability or the impact of more virulent recent variants.  Counsel for the GP reminded the court “the Delta variant is picking up and we may be on the cusp of another wave”. It was also less than a week before so-called ‘Freedom Day’ in England, with the lifting of covid restrictions likely to mean increased risk of contracting covid.

The risks of vaccination were (said Conrad Hallin) “miniscule”.  According to the Medicine and Healthcare products Regulatory Agency (MHRA), addressing the risk of blood clots: 

By 31 March 2021, a million doses of the COVID-19 Vaccine AstraZeneca had been given in the UK meaning the overall risk of these blood clots is approximately 4 people in a million who receive the vaccine.” (here)

Under cross-examination by Joseph O’Brien (representing JS via his Accredited Legal Representative), the GP described CPAP (continuous positive airway pressure) – the treatment for severe respiratory disease.  It involves wearing a mask “like the Darth Vader mask in Star Wars – it covers most of the face”, and it “forces you to breathe in and out, which feels unpleasant”.  The GP expressed concern about whether JS would tolerate this treatment.  She said he would likely find it “distressing and intolerable” and quoted from an article in the British Medical Journal: 

If CPAP is ineffective, or can’t be used (e.g. because JS resists it) ,the next stage is “intensive care – a tube down the throat and into the lungs, with a machine breathing for you – it’s very invasive”.  

All this, as Joseph O’Brien highlighted,  at a time when “we are coming out of the national lockdown” and the rate of infection in the geographical area where JS resides is “higher than the national average”.

Offered the opportunity to cross-examine the GP,  JS’s mother asked “Have there been any covid trials on brain-injured people?”.  The GP said there had not, but that the ‘yellow card’ system had not indicated that brain-injured people were at any additional risk of damage from the vaccine. 

The mother then asked, “Do you know how many people who have brain injury have abstained from having the vaccine, whether it was they who said ‘no’, their parents who said ‘no’, or their doctors who said ‘no’ – because they wouldn’t be in the statistics, would they, if they said no”.  The GP said she didn’t know the answer to that question. 

The judge intervened to address the GP:

For the GP Practice, then – and also for the Accredited Legal Representative – the risks of vaccination are low and the benefits in terms of protection against serious illness are high.  Their position is that JS should be vaccinated.

Parents’ Position

The parents did not really dispute the statistical evidence.  What they challenged (repeatedly) was its applicability to JS as an individual – a person they know better than anyone else, a person who lived with them for 47 years, a person they love dearly and see regularly.

At both hearings (the earlier directions hearing and this final hearing) JS’s parents told the story of how the triple vaccine damaged JS, and they repeatedly emphasised their sense of responsibility for the harm they allowed to be caused to him by this – and by the subsequent measles vaccine.  Their sincerity and depth of love for JS was beyond question.

Although copies of JS’s medical records had been ordered for the final hearing with a view to uncovering evidence of vaccine damage when JS was a baby, it proved – as the parents had predicted (at the directions hearing) – that “you won’t find any record of vaccination damage”.  They described what happened when they noticed that their son was “floppy” back in the 1970s after receiving the triple vaccination:

 “We were naïve; we thought it was temporary.  The doctors didn’t say it was vaccination damage.  We said ‘look how he is – he wasn’t like this at birth’ and they said, ‘oh he’ll be okay’, but he wasn’t.  We didn’t realise it was vaccine damage and we went ahead and let him have the measles vaccination, and it affected his left eye.”

At both hearings they also referred to a doctor in London who examined JS in the 1970s and found his condition “consistent” with vaccine damage – but there seemed to be no documentary evidence of this report.

When JS’s father received his covid vaccination, he reported side effects  – which also caused his mother alarm for JS: 

I think JS is susceptible to reactions.  His father here, when he had the vaccine he had very severe headaches for seven weeks. That’s an exceptional reaction, I think doctors would agree.  I think JS will have a bad reaction – it may be genetic given the propensity of his father to having a bad reaction.”

Over and over, both parents emphasised their sense of responsibility for JS’s health and well-being and their reluctance to agree to a vaccination that might harm him.

When the judge asked “what about his quality of life if he gets the disease?”, his mother replied: “Well, we are the ones who would take responsibility for that – whereas no one is taking responsibility for further vaccine damage.  The decision-makers wouldn’t be around.”

This reminded me of a similar issue for the daughter of a 70-year-old care home resident in a case before Mr Justice Hayden back in February 2021, when (after the judgment that vaccination was in P’s best interests) the daughter asked who would be liable if anything happened to or went wrong for her mother as a consequence of having the vaccination: “Hayden J’s simple and immediate response was ‘Me’ (see the blog post by Bridget Penhale). 

In this hearing, too, the judge took responsibility for making the decision – either to administer or not to administer the vaccine – and explained the basis on which he was making that decision.

The judge’s empathetic recognition that JS, for his parents remains their “little boy”, and their responsibility – despite the law that makes this decision the responsibility of the judge – struck me as a very helpful and supportive aspect of this exchange (and it came at a point where it might have been tempting to argue about who it is who cares for JS now, and where – in fact – the legal responsibility lies).  

The value of the GP’s evidence (especially under cross-questioning from Joseph O’Brien) was also apparent in displaying for the benefit of the parents how their son would suffer if (contrary to their expectations) he did contract covid.  

When Joseph O’Brien cross-questioned the parents, he toned down his usual robust style – but nonetheless led them to “accept there’s a risk” of JS contracting covid, and created the space for JS’s mother to make a statement subsequently seized upon by both barristers and by the judge.  She said: 

“We’re scared of him having the vaccination. We’re scared of him not having the vaccination. It’s a scary world at the moment.” (JS’s mother)

Closing Submissions

On behalf of the GP Practice, Conrad Hallin’s closing submission first addressed the issue of capacity.  If a person has capacity to make their own decision, then the court has no jurisdiction to make that decision on their behalf. 

In this case, everyone accepted that JS lacks capacity to make his own decision about vaccination, despite the efforts made to support him to do so – and it was agreed that this is caused by “an impairment of, or a disturbance in the functioning of, the mind or brain”  (s. 2(1) Mental Capacity Act 2005), i.e. his learning disability.

This triggers the best interests jurisdiction, i.e. “An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests” (s. 1(5) Mental Capacity Act 2005)

Conrad Hallin pointed out that the question of whether or not JS’s learning disability was caused by the triple vaccine “is not a matter that can be confirmed by the medical records”. Concerns about the pertussis vaccine were real (albeit often rebutted e.g. here and here) and “the reality is that we don’t know”.  The belief that earlier vaccination caused JS’s brain damage does, however, go to the heart of “understanding the motives of [the parents] in this case”. They have, he said, “understandable fears”. 

Despite the parents’ fears, the “objective  evidence” is that vaccination is extremely unlikely to cause JS harm.  Counsel ran through the risks of covid vaccination (a 4-in-a-million chance of blood clots with AstraZenica with a 1-in-a-million chance of dying as a result; the “vanishingly small” risk of anaphylactic shock from the other vaccines; some minor side-effects from all three). He contrasted these with the risks of not having the vaccine: “a 5% or higher chance of dying if a member of the general population contracts covid”.

In their written evidence, the parents say they don’t want to gamble with JS’s life or with his health.  I’m afraid NOT having the vaccine is to gamble with JS’s life and health.  It’s also urgent.  The Delta variant is picking up.  The country is about to unlock in a week’s time – slightly less than a week’s time – and cases are expected to pick up substantially from next Monday.  It’s unrealistic to think that JS isn’t going to be exposed to a very heightened risk of covid in those circumstances.  He should not be kept from doing the things he wants to do in order to protect him.  The reality is that he has close contact with carers who may carry the virus and if they get covid they have been vaccinated and will be protected from serious disease, and his parents have been vaccinated and are protected from serious disease, but JS hasn’t been, and that is simply wrong.” (Conrad Hallin, counsel for the GP Practice)

On behalf of the Accredited Legal Representative, Joseph O’Brien “agreed entirely” and was “as one” with the position taken by counsel for the GP Practice – both on capacity and on best interests.  He took some care to pay proper consideration to the views of JS’s parents:

Their views are very important.  They know their son best. They have cared for him for 50 years. Their wishes and feelings deserve proper respect from everyone in this case. They struggle with this decision. They live in fear of the vaccine and they live in fear of the disease. They are not alone.  Many people share those very same concerns.  At the core of it, for them, is their son’s best interests.”

However, he concluded – for the same reasons as those advanced by the GP practice –  that “the GP should be successful in persuading the court that a course of vaccine treatment is in JS’s best interests”.  

On behalf of both parents, JS’s mother said she wanted to counter the idea that their assessment of their son’s best interests was “just an emotional one”. She referred again to the damage caused by the triple vaccination: 

We were there. We saw how he was before the vaccination and we saw how he was after the vaccination. And we can say categorically that the vaccine did affect him. We were naïve enough to say, ‘well the damage has been done now, and vaccines are in general a good thing’, and so we agreed to a measles vaccination in 1972, and it affected his left eye and he can see very little and that has affected his way of life, and we’re concerned about his quality of life with this vaccination, if he’s that ‘one in a million’.  It’s because we know what happened with the two previous vaccinations that we’re concerned with his quality of life after a third vaccination.”

And JS’s father added, “We’re still not convinced that the vaccine won’t cause JS harm”. 

Judgment

District Judge Glassbrook took a break to prepare an ex tempore (oral) judgment, which he delivered at 3.00pm.  

He accepted that JS lacked capacity to make his own decision and that a best interests decision was therefore needed. 

He acknowledged that it was not possible to ascertain JS’s own feelings and wishes about vaccination and said, “I believe if JS could have his say, his beliefs and values would lead him to choose the route that enabled him to avoid harm and gain the best life overall”. 

In my view,” he said, “the key to the case is balancing the risks and benefits of vaccination against the risks and benefits of the virus itself”.

He was “entirely satisfied that the risk of significant harm from the vaccine is very small, and the risk of the disease is very substantial indeed”.  He pointed to the benefits of the vaccine for JS in reducing his risk of contracting covid, reducing the severity of the disease if he were to contract it, reducing the risk of JS being exposed to the challenges of treatments such as CPAP and intensive care, and reducing his risk of death.  Vaccination would also, he said, allow JS the opportunity to better engage in social activity.  

In conclusion, JS should have the double vaccine “and should have them as soon as possible”.  There is no expectation that he would resist, “but if he does so, I authorise a very limited restraint – no more than the brief holding of his arm”. 

The judge acknowledged that this decision will make the parents (who “clearly love their son dearly and have demonstrated this throughout his life”) very anxious.  “But I have decided what I truly believe is best for their son.

As the hearing ended, JS’s father put a comforting arm around JS’s mother. They both looked upset and anxious.  “We just hope your decision brings benefit to our son, rather than more harm”, said his mother.  “Mrs S, so do I”, said the judge: “Nobody has a working crystal ball, but I firmly believe it’s the decision that’s best for JS”. 

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

Photo by Mufid Majnun on Unsplash

Observing a Court of Protection hearing as year 11 and year 13 students

By Martha Purdy,  Meg Aitken and Claire Martin, 22nd July 2021

Attending a Court of Protection hearing is an excellent opportunity to see justice in action. Two students, Meg – about to start medical training in September 2021, and Martha – starting A levels in September and interested in Law, joined Claire (part of the Core Team of the Open Justice Court of Protection Project), at a hearing before Mr Justice Hayden on 5th July 2021. 

The case (COP 13418695) was about whether it was in the best interests of “M”  to have full dental clearance (which means having all of one’s teeth removed). The applicant NHS Trust was represented by Emma Sutton.  There had been previous proceedings (before Mr Justice Williams on 27th May 2021) at which it had been decided that M lacked capacity to decide upon the treatment proposed. 

Mary Neal has blogged about this case in which she details the ethical considerations and procedural aspects of the case. 

Emma Sutton opened with a summary of the case, which is always extremely helpful for observers. M is in his 30s and lives with his father. M requires 24-hour care and support due to ‘pervasive developmental disorder, childhood autism, mild learning disability and PTSD (due to ICU syndrome over the past year)’. M is said to have a great sense of humour, like music and has an interest in 1980s TV shows. M’s sister, O, was also a party in the proceedings, representing herself, and she brought M to life in her description of him and their weekly time together:

He is my favourite person – I spend Wednesdays with him at the moment. When he smiles, it’s the best thing ever. He has significant difficulties with mild learning disability, autism and communication problems – but he thinks and knows how he feels.”

M has dysarthria and his primary method of communication is via a light writer. He is registered blind and uses a wheelchair. His package of care is jointly funded by the CCG (Clinical Commissioning Group) and the Local Authority (both represented at the hearing by Natalia Levine). 

M was represented, via his litigation friend the Official Solicitor, by Michael Horne QC

The Main Issues 

Mr Justice Hayden wanted to explore, in detail, concerns that he had about ordering restraint for M to undergo the dental clearance, and then subsequently the possibility of M refusing to eat food that he enjoyed. He noted that M’s own wishes are important to understand, as was protecting the quality of his trust in those around him, most notably his family relationships. It was clear that he had wanted a more thorough examination of the case, and although no expert or treating witnesses had been arranged for the hearing, they were subsequently called in what became a hearing that spanned 3 days. 

P is a very young man. He has a loving family. This case needs to be considered very carefully. We are contemplating a plan in which, covertly, he’s taken to hospital – he won’t be told why. The Trust has applied for authorisation to restrain him if resists. He has shown consistent resistance [to other health interventions] – which a capacitous person might show. There has not been much dental examination because of that resistance. Restraint weighs heavily on a judge’s mind.” (Mr Justice Hayden)

I (Claire) know from personal experience that attending a court hearing can be anxiety-provoking for observers – for people like Martha and Meg, who are sixth form students, perhaps even more so than for observers familiar with the Mental Capacity Act and the care system, law, journalism etc. The ‘packaging’ around attending a court hearing, I have realised, is so important: what do I write in my email request? I haven’t got the link what shall I do?! (often the link might not turn up until very close to the start time); I can’t hear anything; Have I muted myself and turned my video off?; Will I have to speak to the judge – how do I address them? 

I have only been doing this myself for about a year, and still feel worried that I will commit a terrible faux pas or get completely lost in the proceedings – or worse, do or write something illegal. Jenny Kitzinger has blogged about mentoring undergraduates, and her suggestions were really helpful when thinking about what would be useful to support our joint observations at this hearing. We set up a joint private chat group on Twitter to facilitate quick communication and for me to be able to explain things (as best I could) as the hearing progressed.   There were tense moments at the start when the link had not reached us all even 4 minutes before the scheduled start:

And then, once in, dealing with unexpected computer setting disruptions right at the start of the hearing: 

For Martha and Meg this was an entirely new world – they weren’t aware of the Court of Protection or the Mental Capacity Act prior to finding out about and expressing an interest in attending a hearing. So, their reflections cast fresh and unsullied eyes over the proceedings they observed. 

Martha

I am passionate about a potential career in Law  and next year when I begin my A levels in year 12, I will be studying History, French, Maths and Chemistry to further my interest in these subjects and also allow me to study Law.

The day before, Sunday 4th July, Claire Martin sent me the details of the hearing that would be the next day, Monday 5thJuly at 10:30am, and then assisted me in drafting an email to request access to observe.  I received an automatic response; however, it was not until 5 minutes before the hearing actually started – at 10:25am – we received the email containing the link for us to join via MS Teams. This was quite stressful. 

Because this was my first observation in the Court of Protection, I was shocked by how thorough Mr Justice Hayden was in his questioning. I was shocked by this because it seemed to me that Mr Justice Hayden’s thorough scrutiny and questioning was evidence of his personal compassion and ambition to do what exactly was in M’s best interest. Although perhaps ignorant, I hadn’t expected the judge to be so thorough, and not to skip over such small details as M’s favourite food for example, in order to bring the case to a close sooner.  I realised the value of Mr Justice Hayden’s deep compassion.

Despite understanding that removing M’s teeth was needed because M’s current pain was unbearable and could not be maintained at the level it was, Mr Justice Hayden was keen to explore whether “less restrictive” options had been considered and importantly, discussed and questioned the impact, after the dental procedure, on M. 

Mr Justice Hayden’s meticulous and forensic exploration of the case was clear to me just by watching him – he paused frequently, clearly to consider. I was also fascinated by Mr Justice Hayden’s scrutiny of each person to look at everything in the whole “sweep of [M’s] life”. 

Because of Mr Justice Hayden, I was inspired to do more research of the role of the judge, and I am in awe of the role. The way in which Mr Justice Hayden considered the personal impacts, not just the medical – evaluating the impact of the dental procedure on M’s relationships with his family and the potential risk of re-triggering trauma  through an understanding of M’s historical trauma and the psychological impact this can have – reminded me that with this particular judge and through Mr Justice Hayden’s meticulous exploration, the outcome of this case would be exactly what was in M’s best interests.

What also stood out to me after observing this particular case, was that there are not always major disagreements in court. I had been under the impression that all court cases have defendants and prosecutors with oppositional views who flatly argued against each other. However, through this observation I was shown this was not the case. There seemed a general consensus that M needed this medical treatment and that that was in his best medical interest, but what was discussed and worked through was in which way to carry out the dental procedure to cause M the least distress as possible. So that it was in M’s “best welfare interests as well as his best medical interests”.

The judge collected as much evidence as possible through speaking to M’s anaesthetist, GP, Dr C (a second opinion consultant in special care dentistry) and M’s sister to try and work through with the barristers and witnesses how the dental procedure could be done in the least damaging way. Everyone present in the courtroom contributed to the evidence and “discussion” as the judge described it and I was surprised to see there was very little opposition. The points of disagreements I observed came mostly from M’s sister. We learned that she was worried about the plan to use diazepam as a sedative for M to take him from his home to the hospital. She believed the diazepam sedative would not be strong enough for M and so M would be in a lot of distress and potentially this could damage the precious relationship between her and M.

I found observing the hearing absolutely fascinating. It gave me a superb insight into real life law and undermined a lot of what I had seen on TV about law proceedings and the court. This experience has widened and deepened my ambition to pursue a career in law and I hope to observe many more cases.

Meg

I’m hoping to study medicine in the future and, when a family friend (Claire) informed me that there was an open court case regarding medical ethics and treatment, I was keen to observe the proceedings. 

I was impressed by how accessible the hearing was to interested members of the general public and how accommodating the solicitors and judge were at each step – briefly describing relevant information in their bundles so that all involved were clear about what was happening. I was particularly interested in the judge’s thinking, which he verbalised as we progressed through the case.

Having heard about M’s medical needs – his teeth are cracked and bleeding, causing chronic pain and limiting his food options – my initial reaction was that he should of course be treated as the doctors recommended, even if this was against his will and therefore involved physical restraint. 

We then heard from his sister, who described M as a person – his interests, his relationships and her deep affection for him. It became clear, and was highlighted by the judge, that M’s relationships were absolutely central to his life and wellbeing. For him to be aware of what he might experience as a betrayal by his sister (in that she hadn’t protected him from the treatment and in fact had supported it) would leave M having to deal not only with the trauma of having his teeth forcibly removed, but potentially the loss of one of the most important relationships in his life.

The four pillars of medical ethics are autonomy, justice, beneficence, and non-maleficence. This case arguably touches on all four: M’s autonomy was being overridden, there was no clear fair outcome, and the judge was being asked to decide on his best interests without causing harm. This suggests that the role of the doctor goes beyond a narrow focus on medical outcomes to incorporate the best overall interests of the patient. This is precisely what the judge sought to do. 

Two drugs were being considered to sedate M: diazepam and midazolam. Dr B (consultant anaesthetist) and M’s GP recommended diazepam, arguing that midazolam is only used in hospitals in extreme circumstances due to respiratory risks, it is off-license, and it has never been used in the community before. Diazepam would, however, not provide the amnesic effects that midazolam would, and would be more likely to require the physical restraint of M. Although post-operative psychological support was offered, the judge emphasised that this could not guarantee the protection of M’s relationships. 

It was interesting to see that the argument put forward by the medics and the ambulance service prioritised the best medical interests of the patient, promoting the physically safer and more common course of action. It was the judge, M’s sister and M’s counsel who emphasised the significance of M’s relationships and so ultimately midazolam was chosen – with the CCG agreeing to source an ambulance and paramedics, meaning that the drug could be administered safely with the fall-back of professionals on site.

It was fascinating to observe the legal proceedings address such complex medical ethics and to see the judge and barristers keep the person at the heart of decision making.

Final Reflections 

Observing this case was a moving experience – M was brought to life as a whole person, not just a body that required a dental procedure. 

Both Martha and Meg refer to this aspect of the hearing: what we might describe as the humanisation of the person at the centre of the issue. It seems that witnessing this has been illuminating for them. 

I know that, prior to the pandemic, some sixth forms offered visits to court hearings to witness law in action. The remote nature of COP hearings perhaps offers wider opportunities to inspire and help to develop students’ ethical and moral thinking. This feels ever more important as part of our civic education. 

Martha Purdy is a Sixth Form student studying History, French, Maths and Chemistry. 

Meg Aitken is applying to study medicine from 2021 

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

A best interest decision about life-sustaining treatment for a person with profound neurological injury following COVID-19 infection

By Jennifer O’Neill, 20th July 2021

At relatively short notice I was afforded the opportunity to observe a hearing (COP 13783897) before Mr Justice Hayden.  The case (in the ‘urgent hearings list’ on 14th July 2021) concerned the proposed withdrawal of life-sustaining treatment from a lady in her mid-fifties (AH) who, having suffered severe neurological complications of COVID-19, may lack the capacity to make her own treatment decisions.  

This was the first time I’d observed a hearing in the Court of Protection and the first time I’d observed a fully online hearing.  Having been told about the hearing at 1.33pm,  I requested a link to join proceedings via email and  received the details within 10 minutes.  

When I joined the hearing via Microsoft Teams at 2pm I was not quite sure of what to expect.  Despite the online setting, it was clear that there was no lack of formality.  Mr Justice Hayden’s clerk emphasised that this was not a meeting and very much a court setting.  All participants were instructed to ensure that they were in a private space with no other persons present, or within range, so as to maintain confidentiality:  those without an active role to play were instructed to turn cameras and microphones off.  Everyone was reminded of the restrictions on recording and reporting.  The hearing commenced with all those present instructed to “rise” as Mr Justice Hayden – who was physically present in the High Court – joined the virtual courtroom.   

Mr Justice Hayden brought an immediate air of authority to the online proceedings, yet he also displayed warmth in how he approached this sensitive case from the outset.   Mr Justice Hayden’s immediate priority was to establish which family members were present, and to ensure that all the family members were visible on screen: he therefore requested everyone else (other than counsel in the case) to turn off their cameras. This meant that the faces and expressions of the family were clearly visible throughout.

The Hearing

The hearing was opened by Sophia Roper, counsel for the applicant Trust.  She provided a brief summary and introduction to the case.  She reported that AH has suffered from a range of “profoundly damaging” neurological conditions resulting from COVID-19 infection and has been in the intensive care unit since December 2020.  As later described by Mr Justice Hayden, these complications were the result of the virus having “attacked every part of AH’s body and every aspect of her bodily functions”.  

The most serious complications were four separate neurological conditions: necrotising myopathy, motor neuropathy, brain stem encephalopathy and cerebral encephalopathy.   The motor neuronopathy had affected at least 90% of AH’s nerve cells, resulting in loss of function from below the neck, including limited movement of the diaphragm.  In addition, the brain stem encephalopathy had also caused permanent and significant damage to the brain stem itself – an area of the brain which contains respiratory regulatory centres.  This means that AH is now permanently dependent upon a ventilator to breathe.  AH has also lost a degree of function in the face, neck, and eyes.  The damage caused to both cerebral cortices, resulting from the cerebral encephalopathy, has placed AH in a condition which is akin to, but markedly more complex than, that of ‘locked in syndrome’.  

Before admission to hospital, AH lived at home with her immediate family members. During the hearing, the importance of those relationships was emphasised to the court.  The court heard how AH’s family were “the centre of her world” and Hayden J commented that it was also evident that AH was at the centre of her family’s world, as evidenced by how quickly those family members had rallied to attend the High Court with less than an hour’s notice.

AH has a medical history which could have predisposed her to the severe effects of COVID-19, having suffered seasonal respiratory infections and acute bronchitis.   However, the effect that the virus took upon her body was rare.  AH initially contracted the virus in December 2020 and was admitted to a leading hospital. She subsequently self-discharged, but then rapidly deteriorated and was re-admitted and has been in a neurological ICU for the past seven months.   Whilst AH was described as “locked in”, Hayden J emphasised his aversion to terms such as ‘locked in syndrome’ which may fail to encompass the associated complexities of these conditions.  The High Court heard that AH could communicate to a degree and was able to respond to ‘yes and no’ questions with eye movements.  AH’s clinical case had been referred to a national COVID neurological team which reached three conclusions about her condition; 

  • although each of her complications has been experienced by other COVID patients, no other patient has experienced the “unique combination” that she had; 
  • there is no additional treatment available 
  • there is no realistic expectation of “meaningful improvement”.

The hearing arose because the Trust no longer considered life-sustaining treatment to be in AH’s best interests.  It asserted that whilst there had been “limited improvement” in AH’s condition, such improvement coincided with greater awareness and subsequently increased suffering and distress.  The treatment required to keep AH alive was also described as “invasive and burdensome”.  Counsel for the Trust referred to one aspect of that treatment – suctioning – describing it as being painful and causing AH “significant and repeated distress”.   Hayden J later acknowledged that this assessment of distress was determined by the physicians’ subjective interpretation of AH’s facial expressions.    

Capacity

Although the issue of capacity was not addressed in any depth at this early hearing, the trust inferred that AH’s capacity was diminished.   In accepting that AH could communicate, there was concern that her “concentration was impaired” to such an extent that she would not recognise when being asked the same question twice. So, the Trust considered that a best interests decision would be necessary since AH would not be able to make treatment decisions for herself. 

Nageena Khalique QC, on behalf of AH (via the Official Solicitor), explained that the family had, in their possession, video evidence showing AH communicating that she did not want to die.   Concern was raised as to the Trust’s apparent focus upon AH’s ‘negative facial expressions’ rather than her positive responses to seeing family members – something which was consistently mentioned in her notes   Whilst medical records indicate that AH lacks the mental capacity to make “all but simple decisions”,  Nageena Khalique QC requested that the expert opinion of a neuropsychiatrist specialised in ‘locked in syndrome’  be sought in order to “interpret her facial expressions and responses to questions”.   It was noted that AH has an awareness that she is in hospital and clinicians acknowledge that she may be “emerging from a minimally conscious state”.    

Family statements

As this was a directions hearing, the court sought to establish what further information was required from the parties in order both to assess AH’s capacity and to decide on her best interests.   In turning to address the family, Justice Hayden explained that an assessment of a patient’s best interests involves consulting a “broad canvas of all the information which is available” and that includes obtaining a full picture of the person at the heart of such decisions.  On these grounds, he advised the family to prepare written testimonies for the subsequent hearing.  

With compassion, Hayden J reminded the family of the evidence that AH is “unlikely to recover any autonomy over any aspect of her life or do anything independently again.”  He said, “The damage she has sustained is enormous and awful to read about” such that she “will never be able to live outside of residential care” and “things that have been dear to her, she will never be able to enjoy in the way she would have contemplated”.  But he clearly stated that this “hypothetical factual matrix” (i.e. even if these facts are all true), “does not automatically indicate a clear best interests outcome”.   

Brief testimony was then provided from each of the close members of AH’s family in turn.   The family provided compelling testimony as to their love of AH who had consistently expressed to them, her wish to “carry on”.   

AH’s sister said that AH “might have been a bit of a worrier, but she was a very strong person who faced problems head on. She had a lot of resilience”, adding: “She’s my big sister. I’ll be there for her. Nobody wants to lose a sister”.

AH’s son said that “the best person to ask is my Mum, and we have video recordings of her clearly saying she doesn’t want to be end of life”.  He started to explain that treating clinician, also present in court, “has applied ridiculous amounts of pressure on the family”, but Mr Justice Hayden intervened:

These are doctors from a centre of excellence, doing their very best. That idea is one I simply don’t accept. Everyone has a different idea of where your Mum’s best interests lie.  Dr A is here in court, in his scrubs, making part of his day available so that he can better understand how to do the best for your Mum.”

Another son, who works for the NHS, described how he moved out of the family home (where he’d lived for 34 years) to protect his Mum from infection.  “She’s a very strong person”, he said.  “She’d want to carry on in case there was some kind of miracle or a cure was discovered in the future.  I absolutely love my Mum.  If she was in pain, I’d say palliative care, but she’s not in pain and the more I see her, the more alert she is.

The oldest daughter, who lives overseas, spoke movingly:

 “Mum caught the virus four days after I gave birth. Mum was really upset that because of covid she couldn’t be here with me to help me when I went into labour.  I was really looking forward to bringing my son to meet my Mum. She was very excited about it. When my Mum went into hospital, the last thing she said to me was ‘I want to see my grandson’.  None of us want her to go into palliative care. We are all holding out a bit of hope that she will recover. We want her to have a shot at recovery.

The youngest daughter “lived with my Mum right up to the day she went into hospital”.  She visits daily during the week (and an aunt takes over at weekends).  “We all want our Mum to get better”, she said.  “We are listening to what the doctors are saying, but at the same time it’s a virus nobody knows about and she would not want them to give up on her”.  Mr Justice Hayden intervened again, pointing out that “nobody is giving up on your Mum”  and that:

There’s lots we don’t know about covid, but when it comes to looking at evidence about the brain, we are in secure territory and we’ve all got to be intellectually honest.  At the end of the day, it is your Mum’s best interests that I have to keep unswervingly in focus.”

Having listened to the family evidence, Mr Justice Hayden said that he had “not come to even a preliminary conclusion on the evidence in this case”.  He noted that “the family has unified around the same position” and said that AH “would be proud of her children – they are testimony to the strong, independent, loving care that she has provided them with”.

Ongoing treatment or palliative care?

Hayden J, with great sensitivity to the plight of AH’s family, set out the choices which were available at the subsequent hearing: that AH be discharged from the Hospital to the care of a highly specialised residential unit – a risk which would not be without significant risk to her life and well-being – or that life-sustaining treatment be withdrawn and AH placed on a palliative care plan which would be followed by the end of her life in a way which was free from pain.  

Hayden J described the options before him as “awful and invidious”.  Of particular concern was that AH’s complex clinical condition – which Hayden J clarified was not to be “confused with long COVID or locked in syndrome’.  The complexity and severity of AH’s condition means that “70% of residential options” are simply not suitable, and therefore more information on specialist residential options is required.  In apologising to the family for speaking bluntly, Hayden J explained that AH “will never be anything like she was ever again [and therefore] is it important to ask whether a life that’s of value to her can be sustained”.

In nearing the end of the hearing Roper QC requested clarification as to the independent expert witness to be consulted.  Hayden J considered that the expert evidence provided by intensivists of the trust provide a “clear picture of AH’s presentation” and that while it was a “stretch” of provisions to say a further expert was required, he considered it necessary to address the family’s anxieties (which he considered to be “entirely unfounded”).  

In closing, Hayden J reminded the family that both his and their primary concern should be AH’s welfare.  He emphasised his hopes that the family would “engage in the process whereby everyone is considering what is best for AH”.  Hayden J also expressed his wish to meet AH, whether in person or virtually, before the next hearing (provisionally planned for the following week).  

Concluding remarks

Whilst familiar with many of Hayden J’s previous judgements, it was a privilege to be afforded the opportunity to attend as a member of the public on this occasion.  Throughout this hearing, Hayden J created a supportive and compassionate environment in addressing what was a sensitive and complex case.  He demonstrated an interest in getting to know AH and her family and spent time to ensure they understood proceedings.  He explained the nature of the hearing, the potential options available and the information he would need to determine which of those options was in AH’s best interests.  Throughout the hearing, he returned to the central concern which was the best interests of AH.  I came away from the court, assured that the case was considered by a judge who cared about all those concerned in the hearing. 

Jennifer O’Neill is a Lecturer at the University of Glasgow.  She tweets @j_o_neill_ 

Photo by Adrien Converse on Unsplash

Delay is inimical to P’s welfare: Guidance on clinically-assisted nutrition and hydration for PDoC patients

By Jenny Kitzinger, 15th July 2020

In a recent hearing (Case No. 1375980T, 10th June 2021), Mr Justice Hayden queried why a man had been given continued medical treatment to keep him alive in a prolonged disorder of consciousness (PDoC) for many years – despite evidence from some family members that he would not want this. 

It appeared that clinicians had not followed legal and professional guidance about how such decisions should be made. 

Whatever the complexities of this case (and I’ve written about it here), it was clear that an application to the court (if necessary) should have been made much earlier, probably around 3 years ago, back in 2018. This patient may have been subject to treatment contrary to his best interests for a very long time.

The delay in making a court application was obviously profoundly troubling and frustrating for Mr Justice Hayden, who referred more than once to the professional guidance about clinically-assisted nutrition and hydration (CANH) produced by the British Medical Association and the Royal College of Physicians (published in 2018) and to his own Guidance about when to refer cases about serious medical treatment to court (published in January 2020).

For me, as someone who often supports families in situations concerning CANH, the depressing thing about the case before Hayden J is not how uniquely delayed the decision-making was, necessitating judicial comment, but rather the reverse: whatever the unique features of this case in particular, the behaviour exhibited by the treating team, which evaded  taking responsibility for making best interests decision for their patient, is widespread in many other units across England and Wales.

Mr Justice Hayden’s frustration is shared by many others working in this area – and it begs several questions: Has the recent legal and professional guidance helped? If so, how? And if not, why not? And what more can be done to improve best interests decision-making for PDoC patients?

I’m going to address these question by drawing on the work Celia Kitzinger and I have done in the Coma and Disorders of Consciousness Research Centre, which includes formal research interviews with over 100 family members of PDoC patients; delivering training about law and ethics to healthcare staff; and acting as volunteer advocates in cases where clinicians or families felt outside help was required (which we’ve written about here). 

My comments are also informed by conversations with healthcare practitioners from 6 different hyperacute, rehabilitation or long-term care centres, who talked with me about what was happening in their own organisations after reading my earlier blog about this case. 

Relevant legal and professional guidance

Clinically-assisted nutrition and hydration (CANH) is a medical treatment. If someone lacks capacity to consent to, or to refuse, such treatment, then decisions about CANH must be made in their best interests (Mental Capacity Act 2005). 

The starting point in law is the strong presumption that it is in a patient’s best interests to receive life-sustaining treatment, but that presumption can be rebutted if there is clear evidence that a patient would not want CANH provided in the circumstances that have arisen.   

Up until a few years ago, the legal advice was that withdrawing CANH from PDoC patients required judicial approval. This created several problems: in particular, it led healthcare staff to abdicate responsibility for CANH decisions, and left some families feeling unable to voice their concerns about ongoing treatment (Kitzinger and Kitzinger 2016)

However, in November 2017 there was a key hearing in the High Court about a patient called Mr Y, which was followed by an appeal in the  Supreme Court in July 2018.  The Supreme Court judgment (An NHS Trust v Y UKSC 46) was that it is not mandatory to seek judicial approval for decisions to withdraw CANH from PDoC patients.

In the same year, the British Medical Association [BMA] and the Royal College of Physicians [RCP] produced detailed guidance about how to make decisions regarding “Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent”. This guidance (endorsed by the General Medical Council) is complemented by the RCP’s (2020) guidance on Prolonged Disorders of Consciousness which includes detailed information about care, diagnosis and best interests decision-making processes for this patient group.

The legal situation which covers PDoC patients is summarised in Mr Justice Hayden’s general guidance on “Applications relating to medical treatment” (published January 2020). Based upon the decision of the Supreme Court in Re Y, this outlines the circumstances in which it is, and is not, necessary to make a court application in relation to providing, withdrawing or withholding serious medical treatment. 

If, however, “at the conclusion of the medical decision-making process” (para. 8) there is doubt, for example because of a lack of agreement from those with an interest in the person’s welfare, and if that lack of agreement relates to the provision of life-sustaining treatment, an application to the Court of Protection must be made.  The guidance goes on to state: “For the avoidance of doubt this specifically includes the withdrawal or withholding of clinically assisted nutrition and hydration” (para. 9).  It presumably is also intended to apply to disagreements about the continuation of CANH (although that is not made explicit). 

Where a court application is necessary the importance of bringing such proceedings in a timely manner is underlined by Mr Justice Hayden. Decision makers are advised “to consider whether steps can be taken to resolve the relevant issues without the need for proceedings” (para. 14(a)) and to recognise that “delay will invariably be inimical to P’s welfare” (para. 14(b).  They should make an application to the court in a timely manner if necessary.

How the recent legal and professional guidance has helped

Our research and other work in this area confirms that the Re Y judgment and the legal and professional guidance that followed have helped in the following key ways:

  • After Re Y, best interests decisions already robustly conducted in the clinical setting could be enacted without further delay. This was a huge relief for the families involved: as one wife of a PDoC patient said,  it felt as if her husband’s best interests were really being put first (see a filmed extract from her interview here).
  • New discussions were started as families felt more able to speak up about what they thought the patient would have wanted. After the Re Y judgment, we experienced a sudden increase in approaches from family members of patients who had been in PDoC for years or decades. These people were explicit that not having to go to court meant they now finally felt able to challenge ongoing CANH. This included, for example, the family of a woman who had been in a permanent vegetative state for over 33 years. 
  • Clinicians were more likely to initiate discussion of CANH. One healthcare professional, for example, told me she had (prior to 2018) discharged dozens of patients in permanent vegetative states into care homes, without ever raising the question of whether or not CANH was in their best interests. (“They’re the ones’, she said, “that keep me awake at night”.) The change in legal and professional guidance, however, means that she and her colleagues now routinely discuss CANH as a best interests decision in relation to all new patients now coming through their centre: “The Y case changed our whole approach. Being able to come to a clinical and family consensus without going to court seems ‘do-able, whereas before the idea of going to court was stressful.” [Allied Healthcare Professional, specialist rehab centre]
  • Guidance about the best interests decision-making process helped healthcare professionals at a very practical level. The detail of the BMA/RCP guidance on CANH (combined with the RCP guidance around PDoC) is seen as invaluable. The comprehensive quality of information, combined with user-friendly formats (boxes highlighting key legal points, flowcharts and checklists) have helped staff to navigate the whole process of talking with families and obtaining the right clinical information and second opinions “I would literally carry the guidelines in my hand to all key meetings with loads of post-it notes.” [Clinical Lead, specialist long term care centre]
  • Specific parts of the guidance also help with documentation and auditingThe BMA/RCP proforma for documenting decisions about CANH was highlighted as particularly valuable because:

 “Not only does it guide you through the process and make sure you’ve thought about everything but it answers my Trust’s question: how do we know when we’ve done this correctly?’ We send the proforma to the Trust Governance Department who then assess whether the process has been done with all due diligence, and decisions can be audited.  [This also means that] if it needs to go to court, all the information is there about the process that’s been followed and it highlights any areas of disagreement that the court needs to address.” [Consultant in a specialist PDoC assessment unit]

The new legal and professional guidance means that many cases are now resolved in discussion between clinicians and patients’ families without the need for court.  This is happening both in centres where robust best interests processes were already established, and in centres where this is developing as a new skill set (since previously they had provided CANH by default).

Healthcare professionals engaging with the guidance say that, even if they were hesitant at first, they are gaining confidence with experience and feel very positive about improvements in patient-centred care and in increased reflective practice across the entire multi-disciplinary team.

Patients’ best interests seem well-served, insofar as the documentation we’ve seen suggests that decision-making where withdrawal of CANH is considered is detailed and thorough. The process followed meets, or sometimes exceeds, what a court might have required. For example, formal diagnostic evaluation designed to detect even minimal consciousness (a “SMART”) was commissioned for a woman who’d been in PVS for over three decades – something which might not have been considered necessary by a court given the length of time since her original injury, the lack of responses observed by family and staff, and the fact that, according to testimonies from her family, some minimal consciousness would make no difference to what she would have wanted – indeed if she were minimally conscious this would be worse for her.

By contrast, we note that some documentation we’ve seen about decisions to continue CANH shows that these decisions are often not robust and display a lack of awareness of the BMA/RCP guidance, or even the Mental Capacity Act 2005. We have seen records of so-called ‘best interests’ decisions to fit feeding tubes,  or to continue with CANH,  which indicate that treatment is in the patient’s best interests simply on the grounds (for example)  that: “Patient cannot swallow” or “Wife consents”.

Alongside the need to monitor the impact of the new guidance, we therefore want to underline the importance of a register for PDoC patients and proper audit of their care and of best interests decision-making (in relation both to discontinuing and to continuing life-sustaining treatment). 

Difficulties with, and resistance to, following the guidance

Compliance with the relevant legal and professional guidance is neither uniform nor comprehensive and the issue of treating patients by default continues to be a problem. 

Healthcare professionals seeking to follow the guidance sometimes describe challenges such as lack of training or resources to permit proper best interests reviews of CANH, so the ‘easiest’ thing to do is not to address the issue at all. 

They may also be discouraged by a lack of clear commitment from their organisation, or even an implicit sense that there is somehow a contradiction between a professional commitment to rehabilitation, on the one hand, and a commitment to best interests, on the other.  

Others find their own sense of identity threatened or they worry that even raising a question about CANH might undermine their relationships with families.

One consultant, just starting a conversation with a family about whether providing CANH to their relative was appropriate any more, described how difficult this was for her in the following terms: “It’s hard to be gamekeeper turned poacher. I feel an internal dichotomy, even though my guiding light is to do the right thing by the individual“.

It can be tempting to wait for the family to raise the issue, or to let years go by in the hope that, eventually, everyone will be “on the same page”, or even that the patient will have moved on to a different setting, so the problem can be passed on to someone else. 

Some healthcare professionals have told me that they explicitly limit their compliance with the professional guidance.  For example, they won’t raise CANH as a best interests decision until at least two years after injury, or simply can’t bring themselves to discuss the issue with any family whose relative has been maintained in PDoC for an extensive period. 

There is also an uneven spread of skills in decision-making. Some GPs, for example, feel that they have neither the time nor the skill to do anything other than continue to prescribe CANH for all patients in the care homes they serve.

Most importantly, perhaps, there seems to be a huge level of inertia built into the system. Years of delay sometimes occur because:

  • No particular healthcare professional feels responsible for decisions to (dis)continue CANH
  • Assessing best interests re ongoing CANH is not seen as urgent so little priority is given to setting up the necessary meetings and second opinion 
  • The legal presumption in favour of life is interpreted as if this presumption can be used to treat indefinitely, regardless of clear evidence that a patient would not want CANH in their current circumstances

 and/or

  • the decision to continue with CANH is seen as “not making a decision” at all. And the act of continuing (e.g. to sign off on repeat prescriptions of formula or routine replacement of old or damaged feeding tubes) is seen as “no action”. This allows some individuals to position themselves as simply “not getting involved” when in fact they are actively involved in continuing CANH.

The way in which continuing CANH is conceptualised is a key problem, with some clinicians or managers not getting to grips with the vital principle that “the fundamental question is whether it is lawful to give the treatment, not whether it is lawful to withhold it”  (Para 20 Aintree https://www.supremecourt.uk/cases/docs/uksc-2013-0134-judgment.pdf)

Outright opposition to the guidance also exists in some quarters. This includes:

  • institutional or management opposition. For example, I was informed by one senior figure that he routinely removes ceilings of treatment for all patients coming into his unit because “we’re a rehab centre not a knacker’s yard”.  In such circumstances, individual healthcare professionals can find it very difficult to follow professional guidance. A GP trying to discuss CANH as a best interests decision was “aggressively challenged” by the care home manager. Other healthcare professionals ran into difficulties with managers who were “hostile” or concerned about a perceived “reputational risk” to the organisation. Another healthcare professional told me the religious ethos of his organisation means he has had to be cautious and strategic in bringing the organisation into line with the guidance, although he has now succeeded and is extremely passionate about how genuine religious compassion was being shown to patients in ways that now fully comply with legal and professional guidance.
  • resistance from some senior clinicians. Some allied healthcare professionals who’ve trained with us subsequently report that there is a limit to what they can actually do with their new knowledge of the legal and professional guidance because they are working with consultants who are implacably opposed to CANH-withdrawal. We’ve some direct experienced of this ourselves when we’ve been in meetings where doctors have informed families that withdrawing CANH is equivalent to euthanasia,  is bound to lead to a painful death, and/or that they don’t agree with the law and have no intention of following it.  Many evoke a medico-ethical position they see as being ‘above’ the law, or a personal morality which means they feel compelled to resist professional guidance.

For any of these reasons, and sometimes a combination of several, patients’ best interests can be ignored, and therefore overridden. This means that families desperate to end what they’ve come to see as a violation of their relative’s dignity are routinely faced with excruciating delays and feel compelled to “lobby” for withdrawal, leaving them feeling implicated in the death of their loved one.  Our interviews display this vividly,  e.g. here, where one person describes the difficulty of getting healthcare professionals to take responsibility for decisions, and here and  here where another describes her experiences and says she wishes the possibility of withdrawing CANH had been raised proactively much earlier.

A case study outside the courts

Although there have been many positive changes, we are still encountering cases of lengthy delay inimical to patient welfare. Many of these cases never come before a judge – and, indeed, we do our best to support robust and timely resolution without involving the courts. What cases we’ve worked on demonstrate is continuing failures in best interests decision-making on the ground. For example, we were asked to help support decision-making for Chris, a man in his 40s, whose wife struggled to get those caring for him to consider his best interests in relation to CANH over several years: her experience is outlined in the case study box below. 

So, what can be done to improve best interests decision-making about CANH?

There have clearly been huge improvements, and there is equally clearly still a huge amount to be done to roll out good practice and to ensure that all PDoC patients receive high-quality, patient-centered care, compliant with legal and professional guidance. 

We’ve outlined many recommendations in earlier publications, but here I want to highlight the importance of the professional guidance and of the BMA/RCP proforma – use of which supports detailed and proportionate documentation of decisions. It is also important that no one is simply ‘warehoused’ indefinitely in a care home, without access to specialist input: this is most likely to happen to patients judged to have ‘no rehab potential’ – the very patients who perhaps most need specialist input in relation to best interests review. There may also be a role for the Care Quality Commission to inspect levels of compliance with best interests guidance. Reluctantly, we’ve come to the view that some referrals to the General Medical Council may be the only way of getting some actively-resistant doctors to take note of their obligations. 

The Court of Protection only ever sees a minority of cases where best interests decisions need to be made. But the court plays a crucial role in exploring, defining and setting standards for best interests decision-making beyond the courtroom – in the clinic and in the community. Alongside challenging delays in bringing cases to court, the Court of Protection can make it crystal clear via its judgments and judicial guidance that:

  • continuing CANH (as well as withdrawing it) is a decision and constitutes ‘action’ 
  • best interests assessments need to be undertaken in order to justify continuing CANH as much as to justify withdrawing it.
  • all such decisions and actions must be robustly evaluated and documented in the best interests of the patient.

In training healthcare professionals, we’ve found that words matter – and that this reorientation towards thinking about justification for giving treatment (as well as for withholding or withdrawing it) can be revelatory, thought-provoking and mobilise a different approach to the issue.

The Court of Protection is also uniquely positioned to promote stakeholder engagement with recent legal and professional guidance. The court can take the opportunity of underlining (a) that CCGs who commission treatment, including CANH, must show that it is in the best interests of the person concerned; and (b) that no organisation (whether a private hospital, NHS rehabilitation centre, or charity-run care home) can simply ‘opt out’ of the relevant legal and professional guidance. The BMA/RCP Guidance puts it like this (p.33)

Finally, it needs to be emphasised that individual healthcare professionals cannot simply ‘follow their conscience’ where that means imposing their values on vulnerable patients. Doctors may not offer a treatment because they don’t consider it clinically appropriate – but they should not, simply based on their own values, either deny the patient an available treatment they would have wanted,  or impose a treatment he or she would have wished to refuse. Approaching each patient as an individual is core to good practice. 

Given the persistence of poor practice, and active resistance from some quarters, the court could also make clear that continued provision of medical treatment when it is not in someone’s best interests is an assault, and that clinicians will not be able to rely on the defence in s.5 of the Mental Capacity Act 2005 – meaning that there is a risk to them and to their organisations of claims for damages.

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

“What is he saying to us?” The ‘voice’ of a hunger-striking man in a best interests decision about his medical treatment

By Gill Loomes-Quinn, 14th July 2021

During the afternoon of Tuesday 25th May 2021, I found myself back in the (virtual) Court of Protection for what was my first observation for several months.

I was expecting to observe the latest hearing in Case Number COP 1275114 Re RD (Emma Heron and Olwen Cockell had written about an earlier hearing in this case here) but was surprised to find myself observing a very different hearing.   The case of the man engaged in a hunger strike over his dispute with the Home Office as to the date of birth on his official documentation (reported by Celia Kitzinger and several others here) was back before Mr Justice Hayden. There was no explanation for the departure from the listings, but the facts of the case led me to assume (as was later confirmed in correspondence with one of the barristers involved in the proceedings) that the matter arising in the case was of an urgent nature. 

So, having logged onto MS Teams via the link I had been emailed that morning (7 minutes after sending my request to observe), I found myself adjusting my expectations rapidly and working out what was happening. It probably helped that the case had been covered on this blog before, and that its facts are particularly distinctive, so I deduced relatively quickly from the introduction of the parties provided by counsel for the applicant, and the introductory summary provided by Mr Justice Hayden (particularly valuable in this instance) that I was about to observe a further hearing concerning an asylum seeker (now with indefinite leave to remain in the UK) who suffered considerable trauma prior to arriving in the UK, is engaged in an ongoing dispute with the Home Office, and is on hunger strike in response to this dispute.   (You can read a summary of the original case concerning that came before the Court of Protection last July, and find a link to the published judgment resulting from those proceedings here).

Introduction to Proceedings

The hearing began with a summary of the case before the court. Counsel for the (applicant) Local Authority (Alison Harvey of No. 5 Chambers) explained that P was represented by Arianna Kelly of 39 Essex Chambers; the Clinical Commissioning Group (CCG) was represented by Benjamin Tankel, also of 39 Essex Chambers; and the NHS Trust was represented by Caroline Hallissey, of Serjeant’s Inn Chambers. There was also a Litigant in Person present in court – P’s ‘mum’ (during his time in the UK, he has lived with a married couple he now calls ‘mum’ and ‘dad’). The decision facing the court (a best interests decision – described by Mr Justice Hayden as being “deep in the welfare stage” of Court of Protection proceedings) was concerned with P’s residence and care. Having stopped counsel from progressing to the matter before the court, the judge announced that he would “like the case opened in context – for the public” according to the “guidance”. This was especially helpful to me as I adjusted my expectations in light of the departure from the published Cause List. Mr Justice Hayden then went on to take over from the barrister and outline the facts of the case himself – apologising to Ms Harvey for doing so but stating that he “had the facts at [his] fingertips”. 

Mr Justice Hayden explained that the case before the court concerned a man who is “fixated” on the refusal of the Home Office to acknowledge that he is the age he says he is. He briefly set out the facts as I have outlined them above – emphasising that P’s “fixation” was an “unbalanced factor” in his reasoning.  P places great weight on his correct date of birth as key to his entire identity.  Mr Justice Hayden pointed out that the acknowledgement of P’s age claim would set no precedent and would place no financial burden on the State (in fact it is likely to reduce such a burden because it would delay his entitlement to a state pension). As P’s dispute has made its way through the court system (an application to appeal is currently before the Supreme Court), WA has been consistently refusing food and fluids and is now in “parlous circumstances”. His ‘parents’, understandably, are “visibly exhausted and emotionally drained – how much they have left to give I don’t know, how much it is reasonable to expect them to give, I don’t know”. 

The judge continued, explaining that the reason the case is before the court at this time is that WA was recently admitted to hospital after what transpired to be a second suicide attempt – described by the judge as “a cry for help” rather than a “serious attempt”. He had required intravenous fluids to address clinical dehydration but was now assessed as medically fit for discharge. He remained in hospital although there was no clinical need for this, as it seemed he did not feel ‘safe’ to leave – the hospital had supported him to stay in acknowledgement of his desperate situation and the acute need of his parents for respite, but this was no longer appropriate as he did not need the bed he was occupying. It seemed that two options were to be considered:

  1. WA to return to his parents with a “reinvigorated” package of support.
  2. WA to move to his own flat with 24-hour support.

Counsel for the Local Authority began to explain that her client will put in a package of care at home and started to speak to P’s views but was quickly stopped by the judge who redirected the discussion back to best interests. Counsel then set out the LA’s position that a move home with a package of care is in P’s best interests but there are concerns about how his parents will cope. Again, Mr Justice Hayden interjected, stating that he wished for a “proper, rigorous consideration of best interests”. 

The positions of the parties were then outlined: P’s barrister explained how P does not feel safe to go home. It was pointed out, importantly, that while P has been deemed to lack the capacity to make decisions regarding his intake of nutrition and hydration, he has litigation capacity and therefore instructs his counsel (rather than being represented by the Official Solicitor). No capacity assessment has been undertaken regarding decisions concerning his residence. A seemingly “intractable” situation therefore seemed to have arisen in which P was not prepared to agree to discharge from hospital but, as Mr Justice Hayden pointed out – “That’s not an option. I can’t order the hospital not to discharge him”. P’s barrister’s argument that responsibility lay with the hospital to look to its own systems and resources was “not at all attractive” to the judge. The Clinical Commissioning Group (CCG) did not offer a view on P’s best interests, but (like the Local Authority) was ready to do whatever it could to help. P’s parents’ position was outlined on their behalf: they wished to have P back in their care but were respectful of his wishes.  

There was a period of discussion during which it seemed that no consensus could be reached concerning P’s best interests. Mr Justice Hayden appeared rather brusque with Ms Harvey (counsel for the Local Authority), as she attempted to explain the Local Authority’s position. Ms Harvey explained that the Local Authority had a “backup” plan of a flat for P (with a support plan in place), but this seemed an unacceptable position to the judge, who maintained that her client must “engage with the facts, not as you would like them to be”. From my perspective, it actually seemed refreshing to see a public body attempting to “be ready with something in our back pocket”.  

It turned out that the difficulty with P going home was that he would not be able to have intravenous fluids ‘in the community’ as these could only safely be administered in hospital. This was apparently set out in documents stating the Trust’s position and an attached email from one of P’s treating clinicians. Mr Justice Hayden explained that he had not seen the information and the court was “besieged by documents”. Ms Harvey also said that the Local Authority had only found out on the morning of the hearing about the issue with accessing treatment in the community and this was the reason for their lack of prepared response – this in spite of the fact that the previous Order had been designed to get this information. From my observations of other court proceedings, I note that it is often the case in proceedings before the Court of Protection that work ordered by way of case management seems to be done at the last minute before a case comes back before the court; but given the rather urgent nature of the matter in this case, it could simply be that the lack of preparedness I observed was indicative of the pace of proceedings. In any case, the judge went off-screen so he could read the documents that were going to be resent by Ms Harvey while Ms Hallissey (counsel for the Trust) contacted the doctor to give evidence. 

A clinician gives evidence

The doctor joined the call and was sworn in by the court associate. He told the court that he was responsible for P during his current admission and that he had previously been involved in his treatment during the last year too. He explained that P had experienced no “serious” consequences as a result of his overdose: when he arrived at hospital his salt levels and kidney function were normal, and he had been assessed by mental health colleagues as being a “low risk” for further suicide attempts. There was therefore no need for P to be admitted, but he said that he did not want to go home. Given the nature of his situation, it was agreed that he should stay in hospital for 48-72 hours to give his parents some “much-needed respite”. He was monitored on a general internal medicine ward with daily blood tests and the day before the hearing had experienced dehydration and ketoacidosis – a response to starvation where the body begins to break down fats rather than proteins and carbohydrates in the diet. He was given fluids, and intravenous glucose to reverse the starvation response and as of lunchtime on the day of the hearing was clinically fit for discharge from hospital. 

Counsel for the Trust (Ms Hallissey) asked the doctor “Could you explain how IV fluids are given, and can they be given in the community?”. He explained that they are a prescription medication with specific uses and risks – a particular risk being ‘volume overload’ where liquid in the system causes too much blood to overwhelm the heart. This can cause death. 

Asked by the judge whether, “If a patient has recently been ketotic are they more vulnerable to cardio problems if there were to be volume overload?” the doctor explained that while this was not directly the case, the answer was “obliquely yes”. However, as P was rehydrated, he was no longer ketotic. Mr Justice Hayden then asked whether P’s “maladaptive relationship with food” may have led to consequent vulnerability of his heart; to which the clinician explained that as P may have undergone physiological adaptation to living with mild sub-clinical dehydration there was a possibility that he may be more vulnerable to volume overload. So, as summarised by the judge – “it’s certainly not going to help”. 

The question was then revisited as to whether fluids could be prescribed to P in the community either at home (with his parents) or in a flat.  The doctor’s response was that he could not imagine a situation where this would be possible in the community – because of the need for close monitoring of the speed and consistency of fluid delivery and ability to respond to changes that can sometimes be serious (e.g., the possibility of hyperkalaemia: elevated potassium levels that can lead to sudden death). It is for these reasons that national guidelines for the treatment of acute kidney injury indicate that intravenous fluids should be administered in hospital. 

Conversation between Mr Justice Hayden and the doctor then became rather difficult to follow, as the judge began to ask about IV pain relief. It transpired that this was because he was conflating IV fluids and pain relief, and this turned out to be key to the direction the case then took. The doctor explained that there was limited (though not uncontroversial) evidence of the efficacy of sub-cutaneous and IV fluids in the community in palliative contexts – as distinct from symptomatic treatment and the preservation of life in medical emergencies. It seemed that the distinction arose from the different balance of risks and benefits in situations where the objective of prescribing IV fluids in the community is to control pain at the end of life, compared with managing acute dehydration in a person not at end of life. Discussion between judge and doctor did not seem to produce progress, and Mr Justice Hayden characterised the situation as an “acutely complex moral and ethical dilemma” as P was simultaneously not eating but accepting IV fluids in a “hunger strike that isn’t a hunger strike”. Judge and doctor agreed that, in their view, the situation is “unprecedented”. 

 Mr Justice Hayden reminded himself and the court that respect for P’s autonomy had been key to the  judgment  made last year concerning him. He then asked the questions that seemed to me to be the turning point of the decision-making process unfolding in court – “What is he saying to us?” and “What is his objective?”. In a weak, vulnerable, fragile state – probably permanently sub-clinically dehydrated, but accepting intravenous fluids; it seems that P is “riding two horses”, and the judge doesn’t “profess to know what he seeks”. P can also resort to “passive acquiescence” as a result of his history of trauma, meaning he acquiesces to decisions that he does not actually wish. This obviously adds a layer of confusion and lack of certainty in attempting to deduce what P wishes to communicate. Is P seeking palliative relief from pain without taking the decision to drink? Has he, in effect, “put himself on a palliative plan”? The clinician confirmed that this could be the case. 

The situation changed dramatically as a result of this exchange. Mr Justice Hayden confirmed that while the primary concern of any clinician is with the preservation of life, this actually refers to “sav[ing] a life that can be saved”, and that the judge himself had determined that P can decide for himself whether his life ‘can be saved’. On this basis, is IV fluid both ethical and consistent with P’s welfare? The doctor confirmed that he could see a role for treatment with IV fluid for the relief of the symptoms of dehydration as distinct from, and recognising that this is not the same as, attempting to cure acute medical illness. This approach would also be likely to avoid the “spiral” situation wherein P became dehydrated while ‘in the community’, needing readmission to hospital for administering of IV fluids, then being discharged when rehydrated only to become dehydrated again while at home leading to further readmissions. As Mr Justice Hayden put it – providing IV fluids on a palliative basis would represent “defeat for those of us who seek him to live but [would] respect his wishes to die”. 

Following some further discussion about the possible length of time P may survive with IV fluids but no significant nutrition intake, and the extent to which prescription of intravenous fluids in the community may impact on P’s motivation for nutrition intake (as a side-effect of nutrition intake is rehydration); the judge thanked the doctor for “having been involved in this dialectic, very properly I may say”. He confirmed what I had felt from my observation – that the case now was “a very different situation than the one we opened with”. The position now was that if P were not to take up the “offer” of life-saving treatment, it would in theory be possible for him to access intravenous fluids in the community for palliative purposes. This was indeed a dramatic shift, and the judge’s call for a five-minute recess to “absorb and think” seemed wholly appropriate. I used that time to reflect on my observations from this powerful discussion – as a seemingly “intractable” ethical dilemma was made tractable with an attempt to ascertain what P may be attempting to communicate. 

Evidence from P’s mum

Mr Justice Hayden then agreed with P’s barrister (Ms Kelly) that he should proceed by speaking with P’s mum and then with P himself (with the public platform being cleared so the judge would speak with P in private). There were some technical problems with P’s mum joining the platform, so she dialled in by phone. She was sworn in by the court associate and the judge began to speak with her.

They began by establishing that an option that may be possible is that P would come home to his mum and dad with support and receive IV fluids, meaning that he would remain hydrated and with diminished pain. P’s mum confirmed that she had followed this in the doctor’s evidence. Then Mr Justice Hayden began to discuss with P’s mum her views: 

Judge: You may want [the proposed plan] for a different reason to [P].

P’s mum: True.

Judge: You might see it as a way of keeping him alive, but he sees it as a way of managing the end of his life.

P’s mum: That’s true.

Judge: [Missed full transcription – reference to “from your perspective” and “risks”]

P’s mum: I would like to take [P] home. My husband and I want to nurse [P] at home as long as possible. We want him to be out of discomfort. It is very distressing seeing him in distress.

Mr Justice Hayden then took a very serious tone with P’s mum. He acknowledged that she “get[s] frustrated and angry” but pointed to the high level of care P was receiving from his clinical team. He referenced the “open-minded” approach of the doctor and described this as “a hallmark of a very good doctor”. He asked, “Do you think P wants to die now?” to which P’s mum responded by asking if she could read a statement she had from P. After ascertaining that this was a brief statement that had not previously been seen by anyone else, the judge allowed her to go ahead, and we heard from P via his mum:

You know when everyone keeps saying ‘Keep going, keep going ‘till the decision on immigration is made’ it’s the only way I can see a little hope.

This statement did not make total sense to me, I think this could be because there are outstanding proceedings in relation to P outside of the Court of Protection, the details of which I have not accessed and were not discussed during this hearing. Discussion between the judge and P’s mum continued with an exploration of the extent to which P may have taken in nutrition while at home. His mum carefully explained in detail how she had supported P to observe Ramadan by breaking his fast with three dates, as well as sometimes giving him instant jelly that she bought for her grandchildren. This exchange characterised the detail in which Mr Justice Hayden often engages when ascertaining facts concerning P and their views, wishes, feelings, and beliefs as he sought to understand how P’s mum had made decisions regarding the types of dates she bought, where from, and the extent to which P had inputted into such decisions; and his enthusiasm (or lack thereof) for choices relating to nutrition. It was also clear to me that P’s mum took pride in her knowledge of P and his views – as she explained that “over the years I’ve helped [him] practise Ramadan…” she had “become accustomed” to his preferences so that she “buy[s] the things he likes”, as over the period of 12 years “I’ve got to know what he likes”. 

The judge listened carefully to P’s mum, but then tactfully raised the possibility that P may have at times been engaging in the “passive acquiescence” that is a consequence of his history of trauma. He reminded her that P “has a habit, because of what he’s been through, of acquiescing to things he doesn’t want”. When P’s mum replied: “But I also know [P] very well” the judge took care to check that P’s mum and he were “still on the same page”. In doing this, he was also careful not to reveal more in open court of P’s personal history than necessary – he checked P’s mum’s understanding of “what he’s been through” by asking her to confirm the country in which these events took place, then telling her she should give no more details of these past events. The interaction ended with Mr Justice Hayden asking if P’s mum would be happy with the proposed plan (for P to come home with support and receive IV fluids in the community when required) and she confirmed she would. 

Court is cleared and the judge speaks to P

At 16.09 the court was cleared in order that Mr Justice Hayden could speak to P (from his hospital bed) in private. This meant everyone was required to vacate the online platform and would be notified when the hearing was to recommence. I received this notification by email from court staff at 16.33 and logged onto MS Teams as the hearing recommenced. 

 Mr Justice Hayden welcomed the parties back, addressing Ms Harvey (counsel for the applicant Local Authority): “We’ve moved towards a consensus that merits a reflection and revisiting of the care plan”. There was a brief discussion – prompted by Ms Hallisey (counsel for the Trust) as to the practicalities of arranging IV fluids in the community, but the judge declined to be drawn into the details of care planning; stating instead that a day was required for the parties to look at the proposal and make a plan, and at that point if they wish to restore the application “I will do my level best to make myself available”. As to the question of where P was to go in the interim, Mr Justice Hayden was adamant that “he’s not going anywhere” – encouraging the parties to meet and reflecting that while the case “seemed intractable at 2 o’clock” there is now support for a way forward, and “it’s a question of how, not if, that needs to be clear”. As an observer, I sensed a tension between the perspective of the judge (seemingly oriented towards what one might describe as the ‘headline’ outcome of the proceedings) and the parties (who, understandably, seemed largely concerned with the practicalities and logistics of how the proposed outcome may be realised within the constraints of their respective legal and policy obligations). I did not, however, see this tension explicated or resolved during the proceedings. 

 The hearing concluded with a brief coda prompted by a question raised by Benjamin Tankel (counsel for the CCG) as to whether, given the determination that P had elected to put himself on a palliative care pathway, he should have a DNAR (a “Do Not Resuscitate” order) in place, as this appeared to be “implicit in the direction” and would “make sense and be consistent” with the reasoning behind it. Mr Justice Hayden, however, expressed his surprise at being asked to deal with this new issue at such a late stage in the proceedings. He expressed doubt that the case was yet at the point where a DNAR order would be appropriate – suggesting this may be “something for the future, but not now”. After discussing again with the clinician who had given evidence earlier the treatment pathway agreed for P, and reviewing the data concerning outcomes of resuscitation out of, and in hospital, the judge indicated that he wished to discuss the question of a DNAR order with P himself, and that he would meet with him tomorrow – virtually (asking that the hospital facilitate this with provision of an iPad or similar), and at a time convenient to P. He was “not going to take a decision on the DNAR until I have heard what [P] has to say”, describing P as “an articulate and engaging young man despite lacking capacity” (the disabled activist in me noted that these are not necessarily mutually exclusive characteristics). The judge wanted to hear “his authentic voice” and emphasised the importance of autonomy for a person who is “incapacitous on the central issue” – remarking that “Incapacitous people have a right to autonomy, just as capacitous people do”. Mr Justice Hayden was “simply not prepared” to make a decision without hearing from P. 

As the hearing moved towards a close, and the parties once again demonstrated their concern with the practicalities and logistical issues arising from the decision of the court – with Ms Harvey (counsel for the applicant Local Authority) asking about the impact of the decision on the timeline set out in the original draft order, Mr Justice Hayden indicated that he was “not going to descend to that level of detail…manifestly there have to be timescales but I am not going to be prescriptive”. Again, I noted a sense of competing priorities. I also observed something of the approach Mr Justice Hayden had taken to his engagement with P – as the judge remarked that “I’m trying to empower him to make these sorts of active decisions”. The judge was clearly keen to emphasise that P’s lack of capacity in certain specific domains did not mean he should be deprived of self-determination, and that he should be encouraged to engage in such active decision-making. It was shortly after this, with some brief exchanges regarding discharge and future treatment planning; and the logistics of putting the “consensus” reached into practice in the coming days, that the hearing came to a conclusion.

Personal Reflections

Unsurprisingly, given the gravity of what is at stake at the heart of this case, I was left with much to consider having observed this hearing. As an advocate and disabled activist, I was pleased to observe the ways in which Mr Justice Hayden facilitated P’s participation in the hearing, and the centrality of P’s “voice” throughout the proceedings. As an academic lawyer I noted the playing out in practice of jurisprudential tensions between “public” socio-political, and “private” individual concerns in the operation of law and its social implications. But – by far most overwhelmingly – as a human being, I can only send P my every good wish and kind thought. I hope beyond hope that the seemingly intractable dispute between him and the Home Office concerning his date of birth may somehow be resolved, and that he might feel able to end his hunger strike. And I hope that he is able to access treatment to manage his physical, mental, and emotional pain and discomfort. But, more fundamentally, I hope above all that he is able to find peace. 

Gill Loomes-Quinn is a disability rights scholar-activist. She is founding co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project. She tweets @GillLoomesQuinn


Image taken from ‘The Art of Speaking Your Mind’: Screen print on canvas by Gill Loomes-Quinn

Dental Clearance with Post Intensive Care Syndrome: A Compassionate Decision by Hayden J

By Mary Neal, 13th July 2021

Over the course of three days last week, I observed a hearing (COP 13418695) before Mr Justice Hayden concerning the proposed medical treatment of a man in his thirties (‘M’) who lacks capacity to make his own medical decisions because of a constellation of complex needs including autism and a learning disability. M also has physical challenges: he has dysarthria and uses a light writer to help him communicate; he is registered blind; and he uses a wheelchair. M lives at home with his father, with other family members also closely involved in his life and care. During the hearing his family relationships, and the trust he has in his close relatives, were described as the ‘pillar on which his life is structured’.

M has a complex medical history and it was strongly suspected that he suffers from ‘Post Intensive Care Syndrome’, a particularly distressing form of Post-Traumatic Stress Disorder that can affect those who have been treated in the ICU (as M has been previously). M is strongly resistant to, and very distressed by, any attempted medical examination or intervention, however minor. He has refused to allow his teeth to be examined for four years, and is now in pain with broken and bleeding teeth, and restricted to a very limited soft diet.

This hearing arose because a hospital trust (represented by Emma Sutton) has applied for welfare orders under the Mental Capacity Act 2005 to permit them (i) to perform a full dental clearance on M in hospital under general anaesthetic, and (ii) to use a combination of chemical and physical restraint in order to manage M’s transfer to hospital. What was proposed was the covert administration of 10mg diazepam in M’s soft drink, and if necessary (the Trust hoped it wouldn’t be) the use of blankets, pillows, and possibly ‘soft holds’ to restrain M physically and enable the 30 minute journey from home to hospital. 

A declaration had been made at a previous hearing (before Mr Justice Williams on 27th May 2021) in accordance with s.15 of the Mental Capacity Act 2005 that M lacked capacity to decide whether or not to undergo the proposed treatment. Thus, the issue before the court was primarily whether or not the proposed clinical treatment was in M’s best interests.  

The other parties were M (represented by his litigation friend, Michael Horne QC, for the Official Solicitor), the City Council and Clinical Commissioning Group (represented by Natalie Levine) and M’s sister, Dr O, who is herself a doctor and was a litigant in person. All parties accepted that dental clearance was clinically necessary and in P’s best interests, and agreed that he would not submit to it without restraint.  The issue was what kind of clinical restraint should be used.

Although I have observed many other court processes, both in person and ‘live streamed’, this was the first time I’ve observed a hearing in the Court of Protection, and the first time I’ve  observed a fully remote hearing. Following instructions provided by Professor Celia  Kitzinger of the Open Justice Court of Protection Project, I requested and received a link which allowed me to join the hearing via Microsoft Teams; thus, I found myself logging on at 10.30 am on the first day with little idea of what to expect.

The hearing

The first thing that struck me was that the virtual format did not result in any lack of formality. Mr Justice Hayden was physically located in the Royal Courts of Justice, and it was emphasised to all present that ‘this is still very much a court’. Everyone was reminded of the usual restrictions on reporting and recording, and the usual procedural formalities were observed, with the court being told to ‘rise’ when the judge arrived: and a witness who referred to a barrister by her first name was gently reminded to use title and surname instead. Although the judge was always courteous and often warm (of which more later), his authority was very clear at all times. The virtual nature of the hearing made it easier to observe than a live stream of an in-person (or hybrid) hearing, in that the faces and expressions of participants were clearly visible and their words clearly audible to everyone on the platform. 

Also noteworthy was that, although Hayden J had been presented with welfare orders for his approval, and there was broad agreement between the parties, the judge had insisted on a full hearing because he felt he could not do the matter justice as a ‘paper exercise’. He was particularly concerned about the plan for restraining M (he indicated that he would be generally unlikely to approve a restraint order without a hearing), and about the fact that everything that was being planned – the restraint, and the subsequent treatment – would be done covertly (because it would be impossible to implement the plan if M knew about it). The court heard evidence from M’s sister, Dr O, that M (who she described as ‘my favourite person’) was ‘someone who thinks, someone who knows how he feels, and someone who has strong views’. The transfer to hospital, she said, was highly likely to require physical restraint if only diazepam was used. This, she said would be ‘hugely distressing’ for M, and presumably also for the family members who would have to assist in it.

These factors clearly weighed very heavily with Hayden J during the three days of the hearing. He asked early on why the balance in the plan was in favour of physical rather than chemical restraint, and, clearly not satisfied that this was justified, conducted a thorough investigation of the options. A major concern was the sense M might have of having been ‘betrayed’ by those he loves most and ‘who have contrived to bring this about against his will and without his knowledge’. There was clear potential for serious damage to the key relationships of trust that are fundamental to M’s happiness and sense of self. Hayden J summarised the best interests assessment in this case as a matter of balancing a small risk of something very serious (the risks associated with deeper sedation, including aspiration pneumonia and a return to ICU) against a bigger risk of other kinds of harm (physical restraint, distress, and erosion of trust).

With Hayden J having made clear his uneasiness about approving an order that allowed for a high degree of physical restraint, Day 2 centred on discussion of what form of chemical restraint was in M’s best interests. The Trust’s plan envisaged the use of diazepam in combination with physical modes of restraint. Although they recognised that Dr O (his sister) had an alternative view, the Trust’s position was that it could be considered ‘micromanaging’ for the court to become involved with the type of chemical restraint required, and that – in any event – a doctor cannot be forced by the court to prescribe something that is not considered clinically indicated/appropriate.  The Official Solicitor accepted that midazolam was not an ‘available option’.  This issue – the type of chemical restraint to be used in the community – was the only difference between the parties.

Hayden J was ‘extremely anxious’ that M may need significant physical restraint, and feel betrayed by the involvement of those he loves most in a very distressing experience. He was keen to explore the possibility of using midazolam, having heard during Day 1 that M had tolerated it without difficulty on numerous occasions in the past. The particular attraction of midazolam was that it has a ‘retrograde amnesiac effect’ such that M would be less likely to remember being transferred to hospital, or the role of his close family members in that process, thus preserving his trust in them. Hayden J saw the retrograde amnesiac effect of midazolam as a ‘very significant welfare advantage’, so was keen to hear further expert evidence on whether it would be medically safe for M.

It emerged that midazolam had only ever been administered to M in hospital settings, not in the community (as would be the case here). Because midazolam provides deeper sedation that might suppress M’s breathing, the Trust did not, at this stage, consider its use to be in M’s best interests. The Official Solicitor considered that, on balance, midazolam was in M’s best interests if (and only if) safe transfer to hospital was available (i.e. transfer by ambulance with paramedics trained to monitor M in transit). At this stage, we were told (i) that such transfer was not available, and (ii) that the GP was unwilling to prescribe midazolam to be administered in the community.

A crucial moment in the hearing came during Day 2 when several experts had been giving evidence on the respective effects of diazepam and midazolam. The evidence seemed speculative and possibly contradictory, and it was unclear whether a higher dose of diazepam – which could be administered safely in M’s home – might also achieve the desired retrograde amnesiac effect, negating the need to consider midazolam. Hayden J cut through this uncertainty and lack of clarity by posing a carefully-calibrated question to the consultant psychiatrist, asking: “If you wanted to achieve a retrograde amnesiac effect, which medicine would you use?” The answer was clear: midazolam. This allowed the focus of the enquiry to shift to how the risks of administering midazolam in the community could be mitigated. This brief but watershed moment impressed on me the transformative benefit of a judge who is clear-sighted in the face of unclear expert evidence, and able to formulate the right question at the right time.

When the hearing began again on Day 3, we learned that the Trust had changed its position, and now agreed that midazolam was in M’s best interests. The rationale for the change was that the Trust, while regarding the question of best interests as ‘finely balanced’, now recognised the need to ‘protect key relationships of trust’, and that the issue of M’s trust in his family was ‘absolutely paramount’.  The Clinical Commissioning Group had sourced ambulance transport with trained paramedics, and the GP was content to prescribe midazolam to be administered to M at home. Thus, the Trust was now seeking approval for a different plan, in which restraint would be primarily chemical rather than physical, and M would have no memory of the transfer to hospital, leaving his key relationships of trust intact. Hayden J made the order accordingly.

Reflections

Having read many of his judgments, and having heard him speak extra-judicially, I wasn’t surprised to find myself impressed by Hayden J’s judicial skill. He had identified that a hearing was necessary (where someone else might have approved the plans on paper); summarised the heart of the best interests calculation; formulated the question that cut through evidentiary confusion and made the way ahead clear; and made effective use of the technique of ‘hot tubbing’ (the practice of examining witnesses concurrently). He also showed professional consideration in making his thinking clear to the parties throughout the process, reflecting that, during his own time at the bar, he had preferred it when judges let counsel in on their thinking, rather than surprising them with their conclusions at the end of the process. 

I also found myself very struck by the compassion Hayden J brought to proceedings over the three days. This was apparent in the meticulous care he took to determine M’s best interests and ensure that they were met, and also in the supportive atmosphere he created for all of those involved in the hearing. He went out of his way to be gracious to the expert witnesses, thanking them for their time, and asking them to convey his apologies to their patients because the time taken to give evidence had taken them away from their clinical practice. He ensured that everyone had ample time to take a lunch break, and that counsel had adequate time between sessions to consult with their witnesses and anyone else they may need to confer with, and to prepare any new or amended submissions following those enquiries. He commended parties when they changed their positions, saying that this was ‘a mark of strength and not a mark of weakness,’ and he modelled humility when he noted that ‘we’ve all got something to learn from this [process]’. 

Perhaps the most heartening moment of all was when Hayden J ended the final day of the hearing by asking to be updated on ‘how it all goes’. I came away from the experience reassured that, when led by a judge who clearly caresabout the people whose interests he is charged with protecting, Court of Protection proceedings can work very well. 

Mary Neal is Reader in Law at the University of Strathclyde. She tweets @maryfordneal

Capacity to Engage in Sexual Relations: A forthcoming Supreme Court hearing

By Charlotte Roscoe and Celia Kitzinger, 9th July 2021

Editorial Note: This blog post concerns a case in the Supreme Court. The Open Justice Court of Protection Project normally covers only cases in the Court of Protection. We have made an exception in this case (as we have before, for cases in the Court of Appeal, e.g. here) because it originated in the Court of Protection and will impact upon future judgments in the Court of Protection.

The image is taken from the website for the Supreme Court hearing listed for 15th July 2021, before Lord Briggs, Lady Arden, Lord Burrows, Lord Stephens and Lady Rose. (There are biographies of the judges here.)

The person at the centre of the case is a man in his 30s, JB, who lives with autism and impaired cognition.  He has a history of “behaving in a sexually inappropriate manner towards women” and he “lacks the insight or ability to communicate appropriately with women to whom he is attracted”.  In particular, there is a question about his capacity to understand that a sexual partner must consent to a sexual act, and continue to consent throughout.

The question before the court is whether an inability to understand that a sexual partner must give consent means that a person lacks capacity to engage in sexual relations.  

In the Court of Protection, on 17th September 2019,  Mrs Justice Roberts ruled that JB does have capacity to consent to sexual relations, and did not consider that understanding the need for consent from the other person was a necessary part of capacity.

On 11th June 2020, the Court of Appeal overturned that judgment.

The case is now before the Supreme Court.  

This blog post is intended as a briefing note for members of the public interested in learning more about this case and perhaps observing it for themselves.  

The Supreme Court

The Supreme Court is the final court of appeal in the UK for civil cases (and for criminal cases from England, Wales and Northern Ireland). 

Permission can be given to appeal against a decision in lower courts, including the Court of Protection (normally after a hearing in the Court of Appeal) if there is “a real prospect of success” in arguing that the earlier decision was “incorrect, or suffered from a serious procedural error or irregularity” or “some other compelling reason why the appeal should be heard” (Civil Procedure Rules 1998). 

The home of the Supreme Court is Middlesex Guildhall, a Grade II listed building in an art nouveau Gothic style, on the South West corner of Parliament Square in Westminster, directly opposite the Houses of Parliament.  It was controversially converted to house the Supreme Court for its relocation on 1st October 2009 – “a defining moment in the constitutional history of the United Kingdom with the separation of judicial power from its historic home in the nation’s legislature, the Houses of Parliament, and its transfer to the Supreme Court’s own building”.  There is lots of information about the history and role of the Supreme Court on its website

Currently, the building remains closed to the public due to the pandemic.  Parties to this case will be admitted to the physical courtroom where the hearing will take place. It will be live-streamed and available as a recording to watch afterwards  (as are many hearings in the Supreme Court).   To observe it you will need to go to the “Watch Supreme Court Live” page on the Supreme Courts website.  The hearing is listed for a full day – probably starting at 10am or 10.30am and running until 4.30pm (with a lunch break 1-2pm).

Background

As a consequence of his autism and impaired cognition and related problems, JB has lived in a supported living placement for the last 7 years. He has a comprehensive care package in place which restricts his ability to live independently. Under his care plan, he is supported 1:1 in the community, particularly when in the company of women, and has further restrictions on his contact with others and his access to social media and the internet. These restrictions have been imposed predominantly due to his tendency to behave inappropriately towards women. 

JB’s main desire for many years has been to have a girlfriend with whom he can develop a relationship and engage in sexual relations. In order to achieve this aspiration, he wishes to have time in the community without his 1:1 support, to have freedom to go on dates and also to have unsupervised access to the internet. However, because of his behaviour, which has reportedly included JB becoming fixated on particular women, contacting them via messages and making inappropriate and sexualised advances, JB has been prohibited from taking part in this range of activities. It should be noted that JB has not been convicted of any criminal offences, although an allegation of assault was made but not pursued by the police.  There is, however, a concern that his behaviours may result in a criminal conviction if left unrestricted.

One clinical psychologist reported that JB was at moderate risk of sexual offending by “sexually touching … without consent”. She said that “in terms of vulnerable women who do not have the capacity to consent to sexual relations, there is a risk of [JB] not recognising or respecting this fact, resulting in the potential for rape to occur.”  Another  clinical psychologist (quoted in the Court of Appeal judgment at para. 14 here), said that JB understands the mechanics of sexual acts and the risks of pregnancy and sexually-transmitted disease, but his “understanding of consent is lacking“. When asked, JB defined consent as “one party allowing the other party to have sex without the other party complaining“. The judgment reports what JB said when asked about withdrawing consent:

The psychologist concluded “there was a high risk that [JB] would commit a sexual assault in pursuit of a sexual relationship” (para 15.).

Capacity to engage in sex

Capacity to consent to sex is something the Court of Protection has ruled on many times before.  The Open Justice Court of Protection Project has blogged about some previous cases.  These include one concerning a woman with dementia who formed a romantic relationship with a man in the care home she resided in. She was found by a court-appointed expert first not to have capacity to consent to or engage in sexual relations (here) but then subsequently, by a new expert, to have that capacity (here).  

Under s.3 Mental Capacity Act 2005 a person lacks capacity if, because of an impairment or disorder in the functioning of their mind or brain, they are unable to (a) understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicatetheir decision. 

In the case of B v A Local Authority [2019],  Lord Justice Cobb confirmed  (just 3 months before Mrs Justice Roberts heard the JB case in the Court of Protection), that the relevant information in relation to capacity to consent to sexual relations includes:

Court of Protection

When the case of JB came before Tier 3 judge, Mrs Justice Roberts, in the Court of Protection, she was asked to consider a single issue: ‘does the information relevant to the decision [to consent to sexual activity] include the fact that the other person engaged in sexual activity must be able to, and does, consent to such activity?’ 

Mr Vikram Sachdeva, on behalf of the local authority, argued that  information relevant to the capacity to consent  to sex should include an understanding of the  fact that the other party must and does consent to the sexual act, in part because, for those with learning disabilities like JB, understanding this is key to protecting them from committing a criminal offence.

Mr Parishil Patel, on behalf of the Official Solicitor acting for JB, argued that the local authority’s attempt to expand the test for capacity to consent to sexual activity is an attempt to incorporate a requirement that those who pose a risk of sexual offending must have a sufficient understanding of criminal law. Mr Patel stated that the Mental Capacity Act 2005 should not be used to avoid the risk of criminal offending. Mr Patel further argued that adding this element of consent into the “relevant information” raises the bar from a deliberately low level which has been set in order to avoid discrimination against vulnerable adults, who should be entitled to exercise one of the most basic human functions.

Mrs Justice Roberts concluded that if issues regarding consent were difficult for capacitous people to grasp, then great care should be taken before imposing a requirement to understand the concept of consent on those who are potentially incapacitous. She stated that to include  in the “relevant information” an understanding of consent sets the bar too high.  The judge did not accept it as appropriate to potentially deprive those without capacity of a fundamental and basic human right merely because raising the bar for capacity might provide protection for P or for a victim of non-consensual sex. 

She said; 

To require him to demonstrate as an aspect of his fundamental capacity in this context a full appreciation of both his own and a partner’s initial and ongoing consent throughout the course of that sexual activity would be to impose on him a burden which a capacitous individual may not share and may well be unlikely to discharge. It is true that knowledge of the absence of consent might expose either to the risk of criminal prosecution but in both cases each is entitled to make the same mistakes which all human beings can, and do, make in the course of a lifetime. (A Local Authority v JB [2019] EWCOP 39)

Mrs Justice Roberts further concluded that it is not part of the function of the Court of Protection to seek to exclude P from future harm or exposure to the criminal law. 

The judge held that:

For the purposes of determining the fundamental capacity of an individual in relation to sexual relations, the information relevant to the decision for the purposes of section 3(1) of the MCA 2005 does not include information that, absent consent of a sexual partner, attempting sexual relations with another person is liable to breach the criminal law (para. 87, A Local Authority v JB [2019] EWCOP 39)

The case proceeded to a subsequent hearing at which Mrs Justice Roberts made final declarations as to JB’s capacity in the other areas identified in the proceedings and declarations that his care plan, which included provision for close supervision in the community and education to improve his social awareness to mitigate risks posed to others, was in his best interests. 

Court of Appeal

The Court of Appeal (Lord Justice Baker, Sir Andrew McFarlane and Lord Justice Singh) disagreed with Mrs Justice Roberts’ ruling in the Court of Protection.  The judgment is here: A Local Authority v JB [2020] EWCA Civ 735

Lord Justice Baker began his judgment by stating that in order to consider the question of capacity to decide to engage in  sexual relations they had to balance three fundamental principles: 

  1. The principle of autonomy. 
  2. All vulnerable people in society must be protected.
  3. The Mental Capacity Act and the Court of Protection do not exist in a vacuum; it is concerned first and foremost with the individual however it must adhere to general principles of law. 

Mr Vikram Sachdeva, on behalf of the local authority, submitted that the relevant information regarding the nature and character of the sexual act includes the fundamental characteristic that it is a mutual act which requires consent of both parties. Mr Sachdeva submitted that a fundamental aspect of sex is consent and that including this in information relevant to the decision is not discriminatory against people who lack capacity because whether the other person is consenting is a strong and determinative factor in a decision made by a person with capacity. Thirdly, the local authority argued that a person who lacks capacity to understand that consent is required should be protected from being placed in a situation where they could inadvertently commit a serious sexual offence. It was further submitted that including the other person’s consent as relevant information does not raise the bar too high and it should not be seen as a more difficult concept than, for example, the potential to fall pregnant. 

Mr Patel and Mr Ian Brownhill on behalf of JB submitted that capacity to consent to sexual relations should be assessed on a general and non-specific basis; information relevant to the decision should be kept at a relatively low level reflecting the simple and fundamental nature of the act.  Decision-making in consenting to sexual relations is, they said,  largely visceral rather than cerebral owing more to instinct and emotion than analysis; issues of capacity are different in criminal and civil law and that there is tension between the potential for exploitation of the vulnerable and P’s right to a sexual life. Mr Patel further argued that consideration of whether someone is consenting would turn the test from being act-specific to person-specific and it would add complexity to a test which needs to be kept simple. He further submitted that it would run contrary to the focus of the Mental Capacity Act 2005, which is to empower P and encourage autonomous decision-making. 

Lord Justice Baker summarised that the capacity in issue in this case was in relation to JB’s capacity to decide to engagein sexual relations rather than capacity to consent. 

The analysis of capacity with regard to sexual relations in the case law has hitherto been framed almost exclusively in terms of the capacity to consent to sexual relations. But as this case illustrates, giving consent to sexual relations is only part of the decision-making process. The fundamental decision is whether to engage in sexual relations. (para 92)

The word “consent” implies agreeing to sexual relations proposed by someone else. But in the present case, it is JB who wishes to initiate sexual relations with women. The capacity in issue in the present case is therefore JB’s capacity to decide to engage in sexual relations. In my judgment, this is how the question of capacity with regard to sexual relations should normally be assessed in most cases. (93)

He concluded that information relevant to the decision inevitably includes the fact that any person with whom P engages in sexual activity must be able to consent to such activity and must in fact consent,  as sexual relations between human beings are mutually consensual. A person who does not understand that sexual relations must only take place when the other person is consenting is unable to understand a fundamental part of the information relevant to the decision.

 Lord Justice Baker accepts that the test for capacity with regards to sexual relations needs to be as straightforward as possible but he states that that cannot justify excluding information which is clearly relevant to the decision. He further states that it is a responsibility of the Court of Protection to protect P from harm so such a matter cannot be left to the criminal justice system alone. Lord Justice Baker does not agree that including this aspect in the relevant information is discriminatory as it is a restriction which applies to all regardless of capacity and that we all accept restrictions on our autonomy which are necessary for the protection of others. 

There were three reasons for setting aside the judgment by Mrs Justice Roberts.

This decision by the Court of Appeal – that an understanding of consent from a sexual partner is necessary for a person to be deemed to have capacity to engage in sexual relations – is the ruling that JB (via his litigation friend the Official Solicitor) has appealed to the Supreme Court.

Why it matters

As was acknowledged in the Court of Appeal judgment, the issue of capacity to engage in sex “is of great importance to people with learning disabilities or acquired disorders of the brain or mind” (para. 3). As things now stand, since the Court of Appeal judgment,  capacity to engage in sex does require an understanding that the other person must have the capacity to consent, and does in fact consent, before and throughout the sexual activity.

This decision has been widely discussed, with commentators divided as to whether (as David Lock QC says) it is “sensible, balanced and should be welcomed by those acting in this difficult area” or whether it unfairly raises the bar for people with impairments in the functioning of the mind or brain who want to engage in sexual activity.  Some commentators are very concerned – like barrister Sophy Miles who analyses a subsequent case (Re HD) that was decided with reference to Re JB, and worries that there may be those “who may have previously enjoyed sexual relationships who now find themselves on the ‘other side’ of the capacity test and are expected to leave this aspect of their lives behind”.  

Feminist researchers have previously argued that “the approach under the Mental Capacity Act 2005 fails to place appropriate focus on consent as central to understanding sexual capacity” (Lindsey & Harding 2021) and have commented that “requiring an understanding of mutual consensuality is a crucial step in the right direction to ensure an added layer of protection, particularly for vulnerable women” (Subhi, 2021)   And from a social work perspective Lorraine Currie comments that the Court of Appeal decision in “makes it more challenging, but it makes it more real”.

If we are preparing young people for the ‘real world’ then consent of partners is part of that world. It says to me that we are actually considering that people may engage in sexual relationships and so must be prepared to think through what’s involved. That it is now more than the physical possibility of pregnancy and sexually transmitted infections, it is about the possibility that the other person may say ‘no’ or they may say ‘stop’. This has to be a good thing.” ( Lorraine Currie, Capacity, Consent and Sexual Relations: How latest case may help social workers navigate challenges, 17 June 2020, Community Care)

There’s also a fascinating video-discussion about the JB case (and other cases involving capacity for sex) between Nicola Kohn and Victoria Butler-Cole QC – the latter of whom points out the “peculiar” fact that the case in the Court of Appeal was “argued entirely by men and heard entirely by men –  not a single woman appeared, sadly, at any point in the Court of Appeal process, either as counsel or in terms of the judges”.   Victoria Butler-Cole also points to a gulf between the way in which professionals “on the ground” (psychologists, psychiatrists, speech and language therapists) have approached these questions in carrying out capacity assessments, and the “abstract” approach mandated by the court thus far, and speculates that the Court of Appeal judgment “will probably make more sense” to people working with those with mental disabilities whereas “previously there’s perhaps been more of a disconnect between the law and the way in which things are done on the ground”.   

Listening to this half-hour video-discussion would be really useful additional background for anyone intending to observe the Supreme Court hearing, or simply wanting to learn more about issues relating to capacity to engage in sex.

Note: Given the importance of this case to people with learning disabilities and cognitive impairments, the Open Justice Court of Protection Project has asked the Supreme Court to produce an “Easy Read” introduction to the issues, and we understand this will be produced before the hearing. We will link to it from here.

Charlotte Roscoe is a paralegal in the Public Law and Human Rights Department at Irwin Mitchell in Newcastle She has worked at Irwin Mitchell for nearly 5 years and works in areas such as mental capacity, judicial review and education law. She tweets @charlie_roscoe

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

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