‘Last chance saloon’: One more attempt at kidney dialysis or a move to palliative care?

By Celia Kitzinger, 25 May 2023

The person at the centre of this case (CG) is in his fifties with end stage kidney disease.  He’s been having kidney treatment since 2014 and dialysis since around 2016.  In January 2022 he suffered a hypoglycaemic brain injury, likely precipitated by self-neglect and poor management of his diabetes.  He’s currently in a hospital renal unit, where he’s been for almost a year,  and he’s increasingly resistant to the care package and in particular to renal dialysis, which is supposed to take place three times per week, for four hours per session.  

The Trust (Epsom and St Helier University Hospitals NHS Trust) applied to the Court of Protection on 20th April 2023 for a declaration that CG lacked capacity to make his own decisions about dialysis, and that it was in his best interests to be discharged to a nursing home and for dialysis to be administered to him as an outpatient.

But that changed just the day before this hearing.  

Having obtained a second opinion from a doctor at the hospital, and an assessment from an independent expert psychologist, the Trust’s position at the beginning of the hearing was now that continued attempts at dialysis are not in CG’s best interests and that he should be moved to palliative care. His survival without dialysis is estimated at between 7 and 10 days. At the time of the hearing, his last dialysis was 5 days ago.

There are two problems with continuing dialysis. One is that his femoral veins, and left jugular vein are compromised and can no longer be used for dialysis.  There’s only the right jugular vein now available.  The other problem is that CG keeps pulling out the dialysis lines.  He’s had around 12 lines over the last few months and they’ve all either failed, or he’s removed them.  He pulled one out last week and another was inserted on 12th May 2023 and he soon removed that one too. The Trust’s earlier position was that there should be one last attempt to insert a line, and that occurred on 15th May 2023, when a line was inserted – with no active resistance from CG – but he pulled it out the next day before it was possible to conduct dialysis.  He is described by the Trust as “increasingly resistant to care, shouting and spitting at nurses without apparent provocation”. 

The hearing

The case was heard (remotely) by Mr Justice Moor on 17 May 2023 at the Royal Courts of Justice.  The applicant Trust was represented by Nicola Kohn of 39 Essex Chambers. The first respondent, CG, was represented via his litigation friend, the Official Solicitor, by Ian Brownhill, also of 39 Essex Chambers. The Integrated Care Board (ICB) was represented by Sian Davies and the local authority by Rachel Baker.  Three witnesses were available in court – two doctors and the renal matron.

There was a characteristically helpful summary from Nicola Kohn (counsel for the Trust) at the beginning of the hearing.  She said that the Trust had hoped until very recently to seek authorisation for further steps to facilitate reinsertion of a line and continuation of kidney dialysis, with a view to discharge and ongoing care of CG as an outpatient.  But because CG is now actively and consistently resistant to treatment, the proposal instead is to move CG to palliative care.  She explained that CG has had no dialysis since 12th May.  Clinicians had discussed whether or not dialysis was still possible and agreed that the subclavian route was too dangerous because if CG pulled out the tubes (as seemed likely), it would not be possible to access the vein to staunch bleeding – so that is not a viable option.  This leaves only the right jugular vein and “if ordered by the court, there are still clinicians that will insert a line into the right jugular so that dialysis can be attempted, but the Trust is of the view that it’s not in his best interests”. 

All parties agree that as a consequence of his brain injury, CG lacks both the capacity to conduct the litigation and capacity to decide on his medical treatment.  He’s said, for example, that he does not think he has any health problems. He told the psychiatrist that he didn’t know what treatment was being undertaken or its purpose. When it was explained to him, he could not repeat what he was told.  However, in terms of best interests, the Official Solicitor has a question about whether it’s worth “one more go” at putting the line in, perhaps with distraction techniques to avoid him pulling it out again – and in particular, whether it might make a difference to CG’s ability to accept treatment if he could be discharged from hospital.

It became apparent that CG is very unhappy in hospital.  He is fit for discharge into 24/7 care, but no community placement is available – partly it seems because of some dispute between the ICB and the local authority as to who should pay for it.  (The judge was clear on this point: “I’m not having any truck with arguments between the two of you as to who pays for this. That is simply not on my agenda for today”.) The local authority’s search for a placement has been unsuccessful, with a number of placements refusing to accept him on the basis that his needs were too great.  

Witness evidence

The first doctor on the witness stand said that when he initially met CG he was “happy, sociable, had a sense of humour” but that as time has gone by, and CG has spent longer and longer in an acute setting, he’s become increasingly “disruptive and angry”.  “He’s wanted to be home. He repeats it in every conversation – and it’s said with the frustration of realising he can’t go home”.  A second doctor also gave evidence – unfortunately I missed most of that, though I did hear her agree that one more attempt to insert a line and deliver dialysis would be “a reasonable thing to do”. 

The renal matron, who knows CG very well, described him as “unpredictable”: “One day he says he doesn’t want to die and would welcome another line.  Other days he’s screaming, ‘I can’t do this anymore, take the line out, take the line out, take the line out’”.  His behaviour has “escalated” over the past three or four weeks, she said,  and said it’s been “very difficult to calm him down”: he’s “broken television screens where he’s smashed them, probably because he can’t change the channel”.  Asked by counsel for the Trust whether she thinks it would be in CG’s best interests for doctors to make one last attempt to insert a line into his jugular vein, she said: “If I thought he was going somewhere rather than here, somewhere with a good quality of life, then yes, I think by all means put in another line.  But if he’s going to sit here and languish for another couple of months, then no.”  Counsel asked “Do you think if there was somewhere else for him to go, he wouldn’t pull the line out?”.  “I can’t answer that”, she said.  “I would hope it would be motivation for him to leave the line in, but CG is a very difficult book to read”.  Counsel for CG via the Official Solicitor asked the same sort of questions:

OS:  Do you think it’s worth one more go at putting the line in, with staff members around him who know him best and perhaps distraction techniques?

Mt: If you had somewhere lined up for him to go.  Being here is very hard for him to bear.  You can see him gradually deteriorating.  He’s gone back to repetitive shouting, aggression, he can lash out at staff.

OS: Is he the most long-standing patient on the ward?

Mt: Yes.

OS: And some staff he gets on better with than others?

Mt: I spend a lot of time with him.  We’re of the same age group, so you have that rapport.  If I hear him screaming and shouting, I’ll go and sit with him to calm him down.  Because usually you can talk him down.  But the last few weeks, there has been no talking down.

OS: If he had a community placement, could you put a plan in place?

Mt: That would be no problem.

Counsel for the local authority asked what his “minimal level of nursing need” in the community would be: “round the clock one-to-one, but with someone else nearby for if he became aggressive”.  She followed up by asking if it would take time for new carers to build up rapport: “He’s the original chatty man. He will talk to anyone and everyone, and he is a very sweet guy when he’s feeling well”. 

Arrangements were then made for the judge to speak with CG (without observers present, so I left the hearing for this).  Before doing so, he checked that “there is no placement ready and able to take CG as of this week”, and it was confirmed that there was not.  “That’s the greatest frustration of this case”, he said.  “Last December all of the public bodies were aware that somewhere needed to be found for this man. It would be a great shame if he were denied this one alternative for want of a placement”.   After seeing CG, he reported back that he found him “quite weak”, and that CG “asked me if it was all being sorted out” and “wanted to remain alive”. 

Closing submissions

After the lunch break, counsel made closing submissions.  

For the Trust, Nicola Kohn said that CG’s wishes about treatment were unclear.  Sometimes he says “I just want to lay down and go away… I don’t want dialysis, it’s too much, I just want to die”.  Other times he says he doesn’t want to die and “just need[s] to take a chill pill”.  She emphasised that “the court has to choose between available options – which are between having another line inserted, and remain in hospital, and he’ll inevitably remove it.  Or a palliative care pathway.  And with a very heavy heart, the Trust position is that the palliative care plan is in his best interests”.

For the local authority, Rachel Baker made no submissions on best interests. She mentioned several placements that had been explored, none of which was actually an available option at this point in time (and two would only accept people over 65).

For the ICB, Sian Davies said there was no dispute on capacity or about the treatment plan.  “In the event of the court deciding on further treatment, as the Official Solicitor favours, the role of the ICB would be to continue to work with the local authority to identify a suitable placement. … We are not in a position to put forward anything more concrete in terms of a discharge destination. At the moment there isn’t anything that I can put before the court.”

On behalf of CG via the Official Solicitor, Ian Brownhill raised the “slim chance” presented by “one final attempt” to dialyse CG via his jugular vein.  Even if the judge were to accept the Trust’s evidence that he’d pull it out, at least he’d have that one chance – and if he did pull it out, “he switches at that point onto palliative care”.  It is, said Ian Brownhill, “a last chance saloon”.  He quoted from case law: “There is without doubt a very strong presumption in favour of a course of action which will prolong life” (Re J (A Minor) (Wardship: Medical Treatment) [1991] Fam 33 at 46E-47B, Lord Donaldson) – acknowledging that it “may be a very short prolongation of life” but that the Official Solicitor “considers the relatively minor burdens of reinserting the tube one more time to be in his best interests”. He also expressed “disappointment” that CG is in hospital, “when frankly he ought not to have been there, and ought to have been in the community”.  There was a brief discussion about whether, if CG were to move to palliative care, it might be better for him to die in hospital with people who know him, or whether there would be more benefit by being out of hospital, in a hospice setting.

The judge said he would take 15 minutes to reflect before giving judgment.

Judgment

When the judge returned at 2.45pm to give judgment, there had been an apparent development.  Completely unexpectedly (to me, anyway), counsel for the ICB reported that there were two nursing homes with vacancies that could be considered as options.  I got the impression this was rather tenuous – and counsel for the local authority immediately raised the point that the placements would need to assess CG and there would need to be some decisions made about restraint, and other “holes” in the care plan would need to be filled.  It may be that neither care home would actually be able to offer a place to CG but nonetheless, this seemed a rather dramatic eleventh-hour breakthrough!

“I consider this very important”, said the judge.  “Until this information was available, I was minded to find that there was no nursing home available”.  

In a careful and detailed judgment, Mr Justice Moor declared that CG lacks capacity to litigate this case and to make his own decisions about kidney dialysis, and he summarised the evidence presented in court and the best interests decision facing him. He said he had found that CG wished to live if possible and “life is precious and should be preserved if it’s not unduly burdensome”.  He was “encouraged to hear that these care homes have spaces” and wondered “if the possibility of moving to nursing care would offer [CG] fresh hope and enable him not to remove the line”.  His conclusion was that “it would be wrong for me this afternoon to give up on treatment completely.  I take the view there should be one last attempt – but it is absolutely clear to me that it is one attempt, and there is to be no further one”.  So, the Trust will insert a new jugular line “and then full speed ahead to move him to a care home… I hope he’ll leave that IV line in place for long enough for that to happen.  He may not understand what is happening, and may not be able to prevent himself from removing the line.  It may be that there is not a care home in place. If he removes the line at any point, then there is to be no further attempt to reinsert it, and he should be moved onto a palliative care pathway.  I cannot be clearer about that.  It is the last chance saloon.”

The judge gave liberty to apply to court at short notice to authorise a move to a care home, either for ongoing dialysis or for palliative care.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 430 hearings since 1 May 2020 and has written many blog posts about them. She tweets @KitzingerCelia

New home for man who lives in bathroom

By Celia Kitzinger, 23 May 2023

In July 2022, the man at the centre of this case (I’ve referred to him before as “Brian”) “retreated” to the communal bathroom of the care home where he’s lived since 1993, and has, in effect, been there ever since. I wrote about him a few months ago: “Man lives for months in care home bathroom“.1

He’s in his 50s, with a long-standing diagnosis of a learning disability, plus autism with “unusually acute sensory needs”, and he “exhibits challenging behaviours”.  My understanding is that the bathroom is the only place he feels safe.  His parents are both dead. But for Brian’s Relevant Person’s Representative (RPR) bringing this application in October 2022, when Brian had already been effectively living in the communal bathroom for well over two months, the court might never have known of his situation.

At the previous hearing, on 9th February 2023, everyone expressed concern about his “horrible situation” (Sophia Roper KC, counsel for the man via his litigation friend, the Official Solicitor), which was “hugely regrettable” (Toby Kippax, for the local authority) and “egregious” (Her Honour Judge Barlow).  At that stage, a solo-occupancy bespoke placement had been found, which met with the approval of the Independent Social Worker (Eleanor Tallon), but there was still quite a lot of work to be done to get it ready for him.  Also, arrangements needed to be made for how he would move from his current to his new home (‘the transition plan’).

This hearing, on 10 May 2023, was mostly concerned with the transition plan, about which there was some disagreement, in particular relating to risks associated with the possible use of restraint.  The plan is that Brian will be “encouraged, supported and asked” to get into the car to be driven to his new home.  It may be that he won’t agree to get into the car – and it seems quite likely that, even if he does, he won’t be willing to get out of the car on arrival.  If he won’t get into the car on the first day, the authorities plan to try again on a second day.  But then, if he won’t leave the car (on either day) there is a private provider standing by to restrain him and transport him to his new home. The Independent Social Worker (ISW) has identified a number of risks associated with (especially) restraint and “recommends that a wider multi-agency risk assessment should be formulated with everyone involved, so all the risks to which he’s exposed during the move, which are inevitable, are recognised and mitigated as much as possible”.  

Counsel for Brian via the Official Solicitor said that  the minutes of the MDT (Multi Disciplinary Team) meeting at which the ISW’s report was discussed “caused us some concern… the tenor of the meeting was quite hostile to the ISW’s recommendations”. She continued: “There is a strong flavour of ‘we are bored of this and we have worked very hard and done everything recommended and she just tells us to do more’”.  The local authority had not yet implemented all these recommendations.

Counsel for the local authority said the MDT “did and still do feel the plan will work on their analysis” and “don’t accept their plan was likely to fail”.  They acknowledge that the ISW recommendations “can only improve it” but are concerned that the additional work required to meet them could not be done in time for the following Tuesday, and would necessitate delaying the move.  This would be very far from ideal – not only because Brian would continue to live in a communal bathroom, but also because “he’s been given this count-down sheet with how many sleeps until the move, and so it’s about balancing that against the risk of things going wrong during the move” (Judge).  Counsel for the local authority added: “I don’t think there was ‘hostility’ to the ISW, merely ensuring that the implications were considered”.  As it turned out, however, having agreed at the MDT that “all professionals would use all reasonable endeavour to comply with the recommendations as set out by Ms Tallon”, it seems more achievable than had been expected, and it was hoped that it could all be ready on Monday so that the transfer could go ahead on Tuesday. 

The judge gave permission for the move to go ahead, with the proviso that if the Official Solicitor was not satisfied with the revised plan on Friday, she would make court time available at 4pm on the Monday to resolve any remaining disagreements. I was subsequently told the Monday hearing would not go ahead, so I deduce that the Official Solicitor was content with the final transition plan.  I assume, further, that the move did go ahead on Tuesday 16th May (or on the follow day) and that Brian is now in his new accommodation.  The Official Solicitor asked for an immediate update on the move and the case will be back in court in mid-June to check on how Brian is doing.

I was dismayed by how long Brian had been left in the bathroom and horrified by some of the details of his life there. It was good to see professionals acting decisively and (the judge thought) speedily to resolve the situation once it reached court. The judge acted very much as a facilitator and mediator between parties in this hearing, supporting them in coming to an agreement about the transition plan. Her (placatory) view was that “this is one of those cases where no one’s quite as cross with each other as they think they are”.  She addressed the apparent frustration of the local authority by recognising their “remarkable achievements” in pulling out all the stops to get Brian rehoused quickly – at least after the lamentable delay in bringing the case to court in the first place, which was dealt with in the previous hearing (and was not mentioned today). She referred the “Herculean effort to get to this point”, commended the speed with which furniture and white goods had been purchased, and said “I don’t for a moment fail to appreciate how much work has gone into this case”, asking for that comment to be passed back to members of the MDT.  She also acknowledged that the professionals involved with Brian have other cases on their books and that because of their work with Brian, “other people are having to wait for their needs to be met”.   I recognise this concern. It seems to me that people whose cases come before the Court of Protection often get ‘gold star’ treatment – the court does its very best for them – but when there aren’t enough resources to go around, this may come at a cost to other vulnerable people.

Although this case clearly exposes some of the problems with the social care system, it’s also an example of the use of the Mental Capacity Act 2005 and the Court of Protection at its best. Brian had access to the justice system because, under the Deprivation of Liberty Safeguards (DOLS), he had been assigned – as should everyone in his situation – a (paid) Relevant Person’s Representative, i.e. “representation and support that is independent of the commissioners and providers of the services they are receiving” (Code of Practice (2008)). His RPR made an application to court under s.21A of the Mental Capacity Act 2005, challenging the standard authorisation for his deprivation of liberty in the care home – and Brian was provided with a legal team, through the Official Solicitor, to address his best interests. The court found it was in his best interests to move to another home, appointed a Panel deputy to support the financial planning for the move, and an Independent Social Worker who, as well as advising on the type of accommodation that would be suitable and making recommendations for the transition plan, also addressed his support needs and risk assessment more broadly, and the need for a positive behaviour support plan. An immense amount of time and effort has gone into putting right what has gone wrong in this case – and of course that has to be the right thing to do.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project and has watched more than 430 COP hearings in the last three years. She is a prolific blogger and tweets @KitzingerCelia

1In my previous blog post about this case, I expressed concern about what I understood to be a proposed ‘retrospective’ transparency order. I would like to put on record here that the revision to the transparency order did not in fact retrospectively prevent us from reporting any information from the earlier hearing. The revision added the name of the private care provider to the list of people/organisations that could not be identified, on the grounds that identifying this small private care provider was one of the pieces of information likely – in conjunction with other information in the case – to identify Brian (and preventing the identification of Brian has always been the underlying aim of the transparency order).

On not authorising restraint for bowel surgery

By Celia Kitzinger, 17 May 2023

A man in his 70s with schizophrenia (Mr Clarke, not his real name) was diagnosed with malignant tumours in his bowel in mid-2022.  The applicant Trust (University Hospitals Plymouth NHS Trust) recommended surgery, but Mr Clarke declined it, stating variously that he did not have cancer, that if he would heal himself, and that even if he did have cancer, he would not want surgery due to his poor quality of life.  

After some delay – attributable I believe in part to some uncertainty about whether or not Mr Clarke had capacity to make his own decision about surgery – the Trust applied  (jointly with the Community Mental Health Services provider) on 17 April 2023 for a declaration that Mr Clarke lacks capacity to make his own decision about surgery, and that it would be in his best interests to have surgery.   I watched two hearings in this case (COP 14075898). 

The first hearing was on 24 April 2023 before Mr Justice Moor. It was very short and did not progress matters much because the Official Solicitor had not yet been appointed.  The judge simply made an interim declaration that there was reason to believe that the patient lacked capacity and put arrangements in place for another hearing as soon as possible.

On 10 May 2023, the matter came before Mr Justice Hayden, with Rhys Hadden of Serjeants’ Inn acting for Mr Clarke.  As at the earlier hearing, Jack Holborn of 39 Essex Chambers represented the applicant Trust, and Ian Brownhill of 39 Essex Chambers represented the mental health services provider.  By this time, the parties were all in agreement that Mr Clarke lacks capacity as to his care and treatment (and also lacks litigation capacity) and they had also reached a consensus position that surgery was in his best interests.  Moreover, Mr Clarke had recently had a change of heart, and agreed to have the operation.  As he told the Official Solicitor’s agent: “Every time I have turned it down because I just didn’t think I was worth it, but I have felt bad a few times, so I have said I will have the operation, I don’t know whether it is the same thing, or it has got worse, but yeah I will have the operation”.  

The issue in court was whether, if it turned out to be necessary, the court would give permission for physical restraint to be used to get Mr Clarke to hospital if he says, on the day, that he doesn’t want to go after all.  There might also be a need for restraint once Mr Clarke is in hospital but before he has surgery, and as part of his post-operative care. The application asked the court to pre-authorise restraint if it turned out to be needed.

The judge said at the beginning of the hearing that he was “not persuaded of the need for physical restraint” and that he was “by no means sure that compelling him into this operation against his will would be in his best interests”.  He pointed out that he had “proffered a view that is plainly different from what is said by all counsel.  Physically restraining people to compel them to have operations is something from which I instinctively recoil, but that doesn’t mean I’m right.  Occasionally, with psychotic mothers and caesareans, I have made such orders, but there is something intrinsically different in the context of motherhood and another life.  I would like to ensure that everyone has a chance to reflect on this…”. 

The doctor who was in the (virtual) courtroom raised his electronic hand at this point, and said he “completely agreed” with the judge in relation to physical restraint to get Mr Clarke to hospital and to keep him there during the 2-day period of tests and preparation prior to surgery.  But “in the time leading up to the operation, when he’s in the anaesthetic room or operating room – well, even the most sane people tend to wonder whether that’s the right thing to do at that point”.  

The judge took this on board, characterising it as “a realistic scenario of compliance until the scary bit – and then the panic”.  He gave counsel 15 minutes to discuss this between themselves while he went away to think about it.

On returning to court, Rhys Hadden said that the revised plan was for attempts to persuade Mr Clarke to come to hospital of his own free will, and that there would be no physical restraint – with the proviso that if the first attempt to admit him failed because he resisted, a second attempt would be made no more than a week or two later.    “On the specific point of physical restraint to administer the anaesthetic – if he reached that point and then said he was changing his mind, we would like to explore if light sedation pre-general-anaesthetic could be offered to calm any agitation he might have.” The doctor saw this as “entirely reasonable”.

However, counsel for the remained concerned about not authorising restraint “in that last ten minutes before surgery” (what the judge had called “the scary bit”).  Mr Justice Hayden gave a brief  oral judgment to resolve this issue.

“The essence of the contested view is whether, following sedation and admission for general anaesthetic, if at that final point, Mr Clarke, who has bowel cancer, ceases to cooperate with the process, it would be in his best interests to restrain him until the general anaesthesia inevitably does its work.  In my judgment, while that approach might have a certain seductive attraction, it fails to recognise that surgery, preparation for surgery and recovery from surgery are part of a continuum, and no part of the process can be viewed in isolation.  Mr Clarke has delusional beliefs which are powerful, and one facet of those beliefs is persecutory.  There are a number of potential outcomes following this surgery, but one is that it may be necessary for Mr Clarke to have a stoma. The risk of that in his case is happily very low. That is not in any way to denigrate the stoma – merely to emphasise that Mr Clarke’s capacity to live with it is very limited, and such an outcome would be, for him, very problematic.  Establishing a cooperative, trusting relationship to the extent possible for someone with his condition is absolutely essential, and so to restrain him at any point in the procedure strikes me as corrosive of the relationship between doctor and patient.  Physically restraining someone against their will to have general anaesthesia for a serious operation is something that most of us instinctively recoil from, and for good reason – namely, that it is the repression of an individual liberty and it is disrespectful to individual autonomy.  People who lose capacity for whatever reason don’t necessarily lose autonomy, and accordingly, and for all these reasons, I consider that the plan which has been forged in discussion today, which contemplates the use of midazolam prior to general anaesthetic, is the right level of intervention.  I don’t in fact consider midazolam in these circumstances, properly analysed, constitutes chemical sedation, but it if does, then it is necessary and proportionate and I authorise it.  Post-surgery, it’s anticipated that the post-operative pain may result in combative behaviour which is difficult to manage, and in those circumstances I approve a level of sedation that may be higher than that required for other people as necessary and appropriate. That would constitute chemical restraint, but is balanced and proportionate and I authorise it.  There is no authorisation of restraint for conveyance to hospital.  I’ve made the order and it has effect as of now, even if not sealed by the court.”

Finally, Hayden J asked for arrangements to be made for a lawyer to visit Mr Clarke and tell him face-to-face what the court has ordered as being in his best interests.  From what the judge had read in the papers before the court, he had formed the view that “he is a man for whom a court order would appear to have a lot of significance. That is not so for everybody, but for him it clearly is” – adding “it comes to something when (laughs) respect for court orders is regarded as part of a delusional belief system, but it does seem to weigh very heavily in his mind”.  The judge said that more than one attempt ought to be made to encourage him to cooperate with surgery voluntarily.  If he does not, then the case can come back to court to seek authorisation for restraint.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 420 hearings since 1st May 2020 and is a prolific blogger.  She is on LinkedIn (here), and tweets @KitzingerCelia

“What I need to decide is whether it’s her call or not”: Capacity in the context of anorexia

By Ruby Reed-Berendt, 15 May 2023

Editorial note: This blog post has been temporarily removed. The matter will be back in court on Thursday 18 May 2023 at 10.30am and is open to the public. See our home page for how to observe the hearing.

You can read about this case in detail in the published judgment. Please click here:

North East London NHS Foundation Trust v Beatrice (Rev1) [2023] EWCOP 17 (09 May 2023)

“A lively personality” in a complex medical case

By Daniel Clark, 13 May 2023

This case (COP 14013508) concerned serious medical treatment: namely, whether it was in P’s (we decided to call him Isaac) best interests to have a kidney transplant. As such, the hearing was replete with complex medical evidence provided by a range of specialists, and the medical evidence has been summarised and discussed in an earlier blog post: The most complex of best interests: Organ donation, learning disability, and the options on the table.

It would be easy for the protected party at the centre of this case to ‘go missing’ amongst a sea of expert opinion. However, I was struck how diligently the judge (Hayden J) worked to ensure this did not happen. Indeed, this hearing was the first time I’ve seen a protected party ‘come alive’ in a hearing despite their absence in court. 

The expert evidence
The judge’s commitment to discovering who Isaac is was evident during an exchange with one of the Consultants. Towards the end of his evidence, the judge asked the Consultant for his view of Isaac: his personality, who he gets on with, and how he “enjoys life”. The Consultant’s response was that Isaac enjoys life “in its current form…It will be different if he is coming to hospital for haemodialysis.” This is because Isaac “hates” the hospital environment, and going to hospital regularly (as is required of somebody receiving haemodialysis) “would be very distressing”. This was not, however, what the judge wanted to know, replying that “I’m trying to bring you away from the medical and look at the patient…the man who enjoys life would want to have the best shot at maintaining it”. 

To me, this speaks to an inherent tension between the medical model and a more holistic social model. This is not to say that this doctor did not want what was in Isaac’s best interests; rather that he saw the situation through the lens of Isaac’s relationship with medical treatment. As a result, Isaac the person was just out of view. The judge, on the other hand, was attempting to transcend the strictly medical, and seek an understanding of how Isaac’s personality could instruct us what his views might be if he were able to express them. 

Isaac’s parents
Both parents had joined the hearing via video link, and throughout the hearing the judge ‘checked in’ with them to ensure that they were able to hear and follow everything. They had one camera and it was the mother who took the lead role, but the judge ensured that both were ‘affirmed’ (i.e. made the statement that they would tell the truth, the whole truth and nothing but the truth), so that “if he [Dad] wants to chip in he can”.

The judge started by asking for “a pen portrait” of Isaac. His mother explained that “he’s quite a bubbly young man. He likes to interact and laugh…Not one single carer has said other than that he’s a wonderful young man. He seems to have a light, a personality – even though he can’t talk it just seems to shine through”. He enjoys spending spend time at a day centre and, when he’s home, he relaxes “like most of us”. 

Isaac also likes people watching, both at home and whilst out-and-about, and enjoys looking at street scenes on his iPad. He also enjoys watching videos of Boris Johnson and Piers Morgan, which the judge jokingly referred to in his judgement. 

The judge was particularly keen to understand in what ways Isaac can be affectionate, with his mum explaining that “some people he just really takes to and really loves”. He’s often affectionate to his mum but not so much with his dad, who explained that Isaac’s affection disappeared when he became a teenager (prompting the judge to joke that it sounded like perfectly normal teenager behaviour). However, Isaac does hug his dad when is unwell or in hospital, and his dad feels this shows that he is clearly a safe space for him in those times. 

Isaac’s mum explained that Isaac tolerated a RIG (insertion of a feeding tube) following desensitisation work with a specialist team, and continues to deal well with the site being cleaned. As she put it, “it’s beyond all my expectations of what he would’ve coped with”. Ultimately, this suggested that further work could be done to try and help Isaac tolerate the process of haemodialysis, and his mother would do research to see what could help keep the tube safely in place (as she had done following the RIG). 

Two things were apparent during the course of Isaac’s parents giving evidence. The first was that the judge was clearly eager to ensure that they both felt comfortable and relaxed in what can be an intimidating environment. He made jokes with them, was obviously interested in hearing about their son, and made frequent references to videos of Isaac he had been sent. The whole exchange was an exemplary demonstration of making somebody who was absent feel very present.

The second thing was that Isaac enjoys life. He’s supported by loving parents who help him to live as well as possible, and want to keep that up for as long as possible. His mum said that “if it doesn’t work it doesn’t work. But we have to try our best”. 

The judgment
In his oral judgment, the judge placed Isaac front-and-centre. As the judge put it, ‘descriptions of [Isaac] are not simply a backdrop. They are the way in for the professionals, the Official Solicitor,  and the Court to understand something of what [Isaac] himself would want’.

The judge stated that Isaac ‘is able to communicate in a variety of ways, through his behaviour, through his expressions, through his demonstration of love, approbation and indeed disapprobation’. All of this makes it very clear that Isaac ‘is a young man who wants to live. He has created, with the support of his loving and devoted parents, a life that is full and fun.’

The judge treated Isaac’s personality extremely seriously. To state what Isaac is like was not simply a tick-box exercise but a fundamental step to understanding what is in his best interests. Ultimately, the judge made me feel as though Isaac was present (in spirit) in the courtroom.

At the end of his judgment, in which he ruled that it was in Isaac’s best interests to continue with the desensitisation work to see if he will become able to tolerate haemodialysis, the judge referred to Isaac as “a lively personality” who’s “very fortunate to have parents who are as loving and committed to him as you are”. For an observer, those two things were very clear to see. 

Daniel Clark is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research takes seriously Iris Marion Young’s claim that older people are an oppressed social group, and is funded by WRoCAH. He also works as a carer. He tweets @DanielClark132

The most complex of best interests: Organ donation, learning disability, and the options on the table

Ruby Reed-Berendt and Bonnie Venter, 12 May 2023

To our knowledge, the Court of Protection has only once before grappled with the issue of capacity and organ donation in the context of learning disability: when it considered the case of William Verden last year. You can read the judgment in that earlier judgment here: Manchester University NHS Foundation Trust v Verden & Anor [2022] EWCOP 4. The Open Justice Court of Protection Project has published a selection of commentaries from observers who watched the William Verden hearings (e.g. here, here and here). 

Following in the footsteps of the William Verden case, the individual at the centre of this case, who we will call Isaac (not his real name), is 28 years old and has a diagnosis of learning disability and “Autistic Spectrum Disorder”. He has end stage kidney failure and the key issues before the court concerned what treatment would be in his best interests.  The usual options would be to provide renal replacement therapy via dialysis (where the role of the kidneys in cleaning blood is taken on externally) or transplant. 

Isaac was receiving treatment at his local trust (Trust W), but the potential transplant would take place at a specialist team at another nearby hospital (Hospital X), which was part of Trust Y. 

This was the third hearing in the case (COP 140113508). Bonnie observed the first two and we both observed the final hearing which was attended by all the barristers in person before Mr Justice Hayden on 21 April 2023, with the video-link for Isaac’s mother and observers.

No party was disputing that Isaac lacks capacity to make decisions about his medical treatment, so the evidence focused on what course of action would be in his best interests. 

In this blog, we focus on the medical evidence before the court and how the various options were explored through the examination process. You can also read Daniel Clark’s blog on the parent’s evidence here. 

Beginning the hearing

At the start of the hearing, we could see a large number of people in the physical courtroom, and were grateful that Ms Katie Gollop KC, counsel for the two NHS Trusts, introduced each in turn. In terms of counsel, also present were Mr Scott Matthewson, counsel for the Integrated Care Board, Ms Nicola Kohn, instructed by Isaac’s mother, and Mr Parishil Patel KC, instructed by the Official Solicitor, who was appointed to act as Isaac’s litigation friend. Each was accompanied by their instructing solicitor. Ms Gollop also introduced four healthcare professionals who were available to give evidence to the Court. These consisted of the consultants who either were involved in Isaac’s care, or would be involved if a transplant went ahead. Two independent experts were also involved in the case, Dr Antonia Cronin, consultant nephrologist, and Dr Steven Carnaby, a Consultant Clinical Psychologist specialising in intellectual disabilities. Isaac’s parents were in attendance virtually via Cloud Video Platform (which we also used to observe the hearing).

Ms Gollop began by explaining that prior to the hearing there had been a “productive meeting” with all parties including Isaac’s parents, and that the clinicians had answered their questions and furthered all parties’ understandings. She confirmed that the details of the issues were as set out in her position statement: however Hayden J requested that she provide an outline for the benefit of the observers, which was greatly appreciated. 

Ms Gollop first confirmed Isaac’s age and diagnoses, including Williams Syndrome, that he is largely non-verbal and sensory-seeking. She explained that discussions had been taking place over the past two years as to what could be offered to treat Isaac’s kidney failure. The usual treatment would be dialysis, provided either peritoneally (via insertion of a catheter tube into the stomach), or through haemodialysis (HD), which requires attendance at hospital three times a week for a 3-4 hour session on a machine. Ms Gollop explained that peritoneal dialysis was not an option in this case, because Isaac already had a tube inserted into his stomach to support his gut (known as a Radiologically Inserted Gastrostomy or RIG), and to introduce a second would create a high risk of infection; this was agreed by all parties. The discussion was focused on HD or a transplant – or palliative care. 

During the first hearing in November, all parties agreed that Isaac would be unable to tolerate HD. As Ms Gollop summarised, “he does not like going to hospital, at the time it was hard to get him to go, he doesn’t like being messed about with, he doesn’t like unpredictable noises, it has taken an enormous amount of work to get him to the state where he would accept a blood test”.[1] Concerning transplantation, the options on this front had been narrowed to organs from a dead donor (known as cadaveric donation). Donation via a family member had already been ruled out, and Ms Gollop reported that Isaac’s blood type made him less matchable for altruistic donation (i.e. receiving an organ a living donor who was not known to him). When it came to a transplant, she explained “the difficulty is not the actual operation itself, it is incredibly safe. The difficulties and risks are everything that happens around that. The work up before and post-operative period, and the post-post operative period.”  

Since the previous hearings, there had been a change. With input from the Learning Disability team, “desensitisation work” had been carried out with Isaac to get him into a position to cope with going to hospital and medical interventions. This had successfully allowed him to undergo the insertion of his RIG, and meant reconsideration of whether Isaac could cope with a transplant operation. A further report had been produced by Dr Cronin, the day before the hearing, however her view (which was shared by the clinicians at Hospital X) was that the obstacles to placing Isaac on the waiting list for a transplant were “prohibitive”. This was because Isaac was not established on HD, it was doubtful that he could tolerate HD. There was a realistic prospect that some form of HD would be required post-operatively, and without this, Isaac would die. Ms Gollop confirmed that on this basis, “having considered this carefully, with regret the team at [Hospital X] is not prepared to put him on the list for a cadaveric transplant unless he is able to do HD”.  

At this point Hayden J interjected, leading to the following exchange: 

Hayden J: Does that mean that anyone with severe autism would axiomatically not get on the transplant list?

Ms Gollop: No, because some people with severe autism – like William Verden –  are able to tolerate haemodialysis and he got on the list. It’s a bespoke thing. 

Hayden J: Is it the case that anyone at this end of the autistic spectrum would not be able to receive a kidney transplant?

Ms Gollop: If autism is the reason why you can’t do haemodialysis, that’s right. But there are other reasons why people can’t do haemodialysis. And some people with severe autism CAN do haemodialsyis.   It’s not “he has severe autism, ergo we can’t do transplant’. I don’t know that I’m in a position to say this. 

Hayden J: It’s an important question. 

Ms Gollop: No-one is saying this at [Hospital X]. 

Hayden: No they wouldn’t, but the result of your argument appears to mean that someone at this end of the spectrum would never be placed on the list.

Ms Gollop: Then that’s right.

Hayden J: And that’s an ethical issue that has to be confronted in this case. 

Ms Gollop: And it is being confronted. It’s precisely because people are treating [Isaac] as an individual that this is being discussed. They have suggested that we reconsider his ability to undergo haemodialysis in relation to this stark fact that if he is unable to do this, then his end stage kidney failure will take over.  His mother has said she sees haemodialysis as a ‘non starter’.  Dr B is prepared to engage with this process against his better judgment. He is very worried about the risks

Hayden: So let me follow. Are you contemplating a further assessment of his capacity to engage in haemodialysis? 

Ms Gollop: Something like that. His mental capacity won’t be there but if more desensitisation could be done then it might be possible

Hayden J: I shouldn’t be asking any doctor to engage in a process against their better judgment, nor am I likely to do so.  In the context of end-stage kidney failure, there are no good options. 

Ms Gollop: There are no good options here. There are questions about the demands and burdens of treatment and the effect on [Isaac]’s quality of life. [Isaac] is someone for whom routine is important. He gets enjoyment from his current routine, his visits to his day centre, going out and about, visiting people.  Dialysis would interfere with that routine.  It’s unpleasant and tiring.  There are risks associated with it. All that needs to be weighed in the balance of choosing the least worst option for him now.  It’s a question of a higher quality of life and a shorter one,  or distress and medical procedures and a lot of time in hospital with the possibility of a  longer life. 

Hayden J:  Ms Gollop, you and I have done some very complicated cases together but I don’t recall any that are more complicated than the best interests decision in this case.

This was a very important discussion and demonstrated clearly the issues that were being grappled with. It was good to see Hayden J noting the potential implications of the stance being taken by the clinicians: Isaac was said to be unable to tolerate HD as a result of his ASD, and because of this, the clinicians would not put him on the list for transplant. It could be said therefore that his autism was the barrier to him receiving treatment, and the reason why it might be decided that he should be placed on end-of-life care instead of being given active treatment. The clincians themselves are also constrained by the policies in place regarding the transplant pathway, and as Bonnie has previously written, there are significant barriers to individuals with learning disabilities accessing transplantation. As such, it was important to confront this head on when considering what the options were for Isaac. A consideration of whether he could tolerate HD seemed crucial to whether transplant could be contemplated. It was noticeable that Hayden J considered this one of the most complicated he had ever dealt with – quite the feat given his considerable experience .  This comment from the judge really hammered home how difficult this case was.

Evidence from the medical witnesses

The judge then heard evidence from each of the four clinicians who would be involved in the transplant or were involved in Isaac’s treatment. They were: 

  • Dr A, Consultant Transplant Surgeon at Hospital X
  • Dr B, Consultant Nephrologist at Trust W (who was currently involved in Isaac’s care)
  • Dr C, Consultant Intensivist at Hospital X
  • Mr D, Consultant Transplant Surgeon at Hospital X

We will discuss the evidence from each in turn.

1. Dr A: “It is not safe to embark on desceased donor kidney transplant as things currently stand”

Dr A gave detailed evidence regarding the transplantation procedure and allocation system. Concerning the latter, he explained that the allocation of organs is done by NHS Blood and Transplant (the specialist NHS authority) by means of a complex algorithm on the basis of seven factors, the most important of which are the time the person has been on the list, and a calculation on whether the organ is a match, for example considering blood group, age etc. He confirmed that the waiting time for an organ varies regionally, but in their local area, it is shorter than the national average, because their policy involves using organs which may have been rejected by other centres. He explained for individuals in Isaac’s blood group, the average national waiting time is 729 days, but in their local area it could be as low as 12 months. 

Dr A then described the reasons that the team would not to add Isaac to the organ transplant waiting list. The first was that Isaac would need to be well enough to have a transplant when one became available, and given the timescale there was a risk he would not be. The second was “the practical business of doing it”. Isaac would need a period in intensive care post-operation, and there was the possibility of further treatment including HD. There was some discussion between Dr A and Hayden J about the post-operative environment and complications, however it was not possible to follow this because there were issues with the audio of both the judge and Dr A. The clerks in the courtroom were very responsive when we raised this issue, and with some swapping of microphones, we were able to pick up the conversation after a few minutes. Hayden J was trying to understand at this point when Isaac’s kidney function was likely to deteriorate. Dr B confirmed from the back of the courtroom that he would “fall below the threshold to start dialysis in the next 6-12 months”. Hayden J then put to Dr A: 

“Taking the conservative 6 months estimate and putting it into the time frames you have given us [on transplant waiting times], it seems that there is a realistic prospect that we will know the answer to [Isaac]’s capacity to engage with haemodialysis by the time the kidney is available?”

This appeared to be geared towards exploring the possibility of listing Isaac for a transplant at the same time as the desensitisation work for HD was taking place – what Hayden J referred to as “running options in parallel”.  Dr A confirmed that they would need to be confident Isaac could tolerate HD – not for the purpose of long-term treatment but so that a transplant could be offered safely. He added however that he could not place Isaac on the waiting list unless they were satisfied of his tolerance. The judge pushed him on this: “I don’t get the logic of that. If he’s on the list he doesn’t get matched, but the longer he’s on the list, the shorter the timescale.”

After some discussion, Dr A agreed that it would be possible to place Isaac on the waiting list but have him as a suspended patient, meaning he would still accrue waiting time for the purposes of allocation, but would not be made ‘live’ and able to receive an organ until the clinicians were satisfied he could tolerate HD. Hayden J summarised: “whilst it might be unorthodox, the prospect of getting [Isaac] on a suspended waiting list would be a realistic objective.” Dr A reiterated “that would be straightforward, but does not mean we are prepared to transplant him, we would need to be confident he could be safely dialysed.” 

The judge then stated “in simple terms, last November, I would not have thought there was any prospect at all of [Isaac] being able to comply with haemodialysis. That was Mum’s position. [His mother can be seen nodding at this point]  My thinking, which I’m stating  for Mum in simple honest terms, is that it strikes me as a rather uphill struggle for Isaac to be able to achieve compliance with haemodialysis, but we do sometimes find that people surprise us. If [Isaac] could not tolerate it, the focus would then turn to establishing the best possible package of palliative care for him.”

It seemed that Dr A was also supportive of this course of action; he noted that other benefits could be accrued through the desensitisation work as it would provide reassurance that further interventions, if needed, could be attempted, such as treating Isaac for infection. 

We were both pleased to see the potential for the options to be explored simultaneously, to allow Isaac the benefit of being on the waiting list to accrue time and thus be further up the list for allocation whilst the possibilities around HD were further explored. This seemed to be a reasonable way forward so as not to disadvantage him. Dr A also noted that the approach to transplantation in Hospital X potentially increased the need for post-operative HD to get the kidneys working (as they may have been in storage for longer). He noted that although another unit elsewhere might be willing to accept Isaac as a potential candidate, because waiting times vary dependent on the part of the country that a unit is in, it would be likely that Isaac’s total waiting time could be longer. 

Dr A was also keen to point out that “we have transplanted patients with similar learning and psychological difficulties to Isaac’s, one of two a year he suggested, in every case they have been established on haemodialysis.”  

Dr A was then cross-examined by Ms Kohn for Isaac’s mother, and Mr Patel, for the Official Solicitor. Ms Kohn pushed him on the potential that post-transplantation HD could be needed (which she stated was around 50%) and why establishing Isaac on HD was absolutely necessary: “my understanding is that you consider him theoretically fit for transplant, it is technically possible but the surrounding treatment issues are the impediment”. To this Dr A replied that they could not envisage placing Isaac on the list and then allowing him to die post-operatively because they could not dialyse: “there is a real risk of unpleasant distressing admission leading to his death with us trying, some might say recklessly, to perform a transplant.” It was again emphasised that whilst Dr A would be happy to give him the ‘advantage’ of being on the list, this is “not an acknowledgement that we think he is fit to receive a transplant”.

This line of questioning continued with Mr Patel who noted that in order to make Isaac active (instead of suspended) on the transplant list, the doctors would need to conclude that it would be safe for Isaac to have a transplant, but putting him on the list was a recognition that he might be able to reach that point (to which Dr A replied “conceivably”). It was clear from their discussion that placing Isaac on the list should not be construed as an agreement that he would get a transplant, but rather that it signalled a commitment to assessing him further following the desensitisation work. Dr A suggested 3-6 months would be a reasonable timeframe for re-assessment. Ms Kohn then finally asked “is establishment on dialysis is an essential requirement for transplant to be safe and practical a requirement [for Isaac] or for all patients?” Dr A replied “in our view the ability to perform some form of renal treatment in the peri-transplant period is essential. Otherwise, we would be in a situation where you carried out a kidney transplant and patient would die if it did not work. We could not countenance that.”

2. Dr B: “Haemodialysis is fraught with considerable risk: it is not possible to safely administer it to get him fit enough for transplant”

Dr B’s evidence, from his perspective as Isaac’s nephrologist, focused on HD. Counsel for the NHS Trusts, Ms Gollop,  began the questioning by raising HD as a precondition of transplant and what the risks were. Dr B’s view that HD should not be considered came across strongly in this exchange. He stated: 

“It would involve [Isaac] being stationary for 3-4 hours each time. Initially we would do it once or twice a week, but eventually it would need to be 3 times a week for 4 hours. And this would move up rather soon, it could be in a matter of weeks. If we start on HD with the intention of long-term treatment, it is with the idea of doing it 3x a week for 4 hours. Knowing [Isaac] and reviewing the clinical psychologist’s report, I do not think that’s going to be achievable. It is  fraught with risk.”

Even when pushed by Ms Gollop on whether he would be prepared to offer it, Dr B replied as follows: “There is the dignified palliative route that we adopt when we know that contemplated  medical interventions are going to do more harm than good. It’s an estimate how long [Isaac]’s kidneys will give him time, it’s possible he has a period of stability, if that’s years with a good quality of life, starting him on a treatment which we know might be dangerous and impact on quality of life is not sensible, and that’s a view shared collectively by the renal unit. I don’t think it would be appropriate to embark upon long-term HD.”

We both found this exchange confusing, because it seemed that Dr B was focused on the unsuitability of HD as a long-term treatment, but that was not what was being proposed here, as far as we understood the plan was to try and get Isaac to tolerate HD such that it could be given post-operatively if needed. It seemed odd then that Dr B’s evidence was heavily focused on Isaac’s inability to tolerate it in the long-term, and that he suggested that attempting it was not appropriate, even though his position as far as Ms Gollop understood was it was worth trialling. Hearing his evidence, the judge put to him: 

“What was being canvassed earlier was a possibility, predicated on what he has achieved thus far, that [Isaac] might surprise us, and with the desensitisation work and increasing familiarity with hospital situations, he might manage to find a way to compliance with haemodialysis. The prospect of that is not a good one, but the question is whether it should be discounted. If it is not to be discounted, and he starts on it, what are the risks at that stage? The risks for a compliant 27-year-old on haemodialysis.

To this, Dr B responded that if Isaac did tolerate HD (and there was no physical or chemical restraint) then there are no contraindications.

At this point, the hearing was adjourned for lunch, with Dr B’s evidence to continue in the afternoon.

On our return, Dr Cronin (the independent expert) was now visible in the court room, having arrived to give evidence if needed. Further issues with the microphones again made it difficult to hear the discussion. As far as we could make out, Dr B gave evidence about how he envisaged the desensitisation work would progress to enable what Ms Gollop termed a “trial of limited haemodialysis”. This included work on getting Isaac to be familiar with the machine, having a dummy line placed on his tummy, then moving towards an actual line being put in. The judge asked some questions regarding the experience of dialysis for individuals and what would happen if Isaac was well, versus unwell when receiving it. During his responses, Dr B suggested that although Isaac appeared more cooperative recently, this could be a result of his kidney disease, which could make him fatigued. Hayden J challenged this, noting that in videos he had been sent of Isaac by his mother he did not appear lethargic and had been “full of beans”. His mother confirmed when asked that the clips had been taken recently and that “he had one taken yesterday with his carer at the day service, he was happy and boisterous”.  

A discussion also took place regarding the use of sedation during HD. Dr B stated he was not willing to use chemical restraint (i.e. medication) to achieve compliance. The judge once again challenged this stance, leading to the following exchange: 

Hayden J: A General Anaesthetic seems to be beyond coherent argument. But what about a situation where there had been a pattern of compliance but [Isaac] has a bad day, would you consider an oral sedative? 

Dr B: Oral sedation from time to time is frequently required to bring [Isaac] into hospital, but once someone comes in, there’s a specific timeframe to start dialysis (as we understood, the sessions run at specific times in the hospital). Administering another sedative isn’t practicable.

Hayden J: What I am saying is that [Isaac] may have an inconsistent pattern of compliance. So, whilst there might be strategies for achieving compliance, he might on some occasions need sedating, would you rule that out? 

Dr B: There would have to be a protocol in place in terms of what we are and aren’t prepared to do, and the anaesthetic team would need to be closely involved. Intravenous sedation is out of the question. 

Ms Gollop also raised practical challenges regarding support from the learning disability team, as Isaac’s main contact in that team is only part time, and discussions were ongoing with the ICB to make plans and contingencies for this. Dr B reiterated that HD is not in Isaac’s best interests and that his parents would need to be on page. Hayden J noted to this “The Trust has tacked in a different direction, [Isaac’s mother] has got to hear about it late in the day and is absorbing as it goes along. I wouldn’t assume she’s hostile now, I can see she’s shaking her head that she’s not”. Dr B reiterated that if Isaac was non-compliant in the process, he would not prepared to attach him to a machine three days a week, but up to that he would be willing to try it. The judge asked if Dr B thought Isaac would comply, to which he responded: 

“Knowing him, I don’t think he will comply. One of the things brought up is consistency of environment  for [Isaac]. His environment shouldn’t change, he doesn’t like being messed around with, he doesn’t like loud noises. Even with adjustments, my viewis that he will not comply with treatment. Dialysis would need to be done in same room same time. But there would be change in staff, machine will frequently have alarms, and he may not take kindly to that. We have unexpected occurrences which result in unexpected dialysis on unexpected days, which will be disruptive. Some end up with hospital admissions, which would be in completely different place, times. There is only so much we can simulate and only so much we can aspire to in terms of consistency. It will be distressing for him and us if we cannot safely deliver it. And he is likely to have a death in a medical environment.”

Despite this, however, it seemed that Dr B would be willing to trial dialysis as the “least worst option” as far as active treatment was concerned, while also pointing out that the court could alternatively acknowledge that active treatments are not in his best interests.

Hayden J then moved to a new line of questioning and asked Dr B how well he knew Isaac. Dr B began to reply “I first assessed him in late 2019 when admitted for chest infection, he had a long stay in hospital and under my care, that’s when we identified kidney failure…” But the judge interrupted his answer “I’m not asking about how you know him medically, but about Isaac as a person”. Dr B replied that he had met Isaac once a year. This led to the following exchange: 

Hayden J: Have you made an assessment of his personality?

Dr B: I haven’t bonded as much as some of the nurses. He recognises and remembers people. 

Hayden J: And looking at his interactions with others, what kind of personality does he have? 

Dr B: He enjoys being around certain people, people he loves and knows. He loves his iPad, he loves listening to certain things…

Hayden J: Do you know what sort of things he likes to listen to? 

Dr B: [pauses] I’m sorry I can’t remember 

Hayden J: Can he communicate?

Dr B: He is not verbal, he has limited insight into what is happening, he doesn’t know why doctors assess him, but he feels that a doctor is someone that he has to be on his guard around. 

Hayden J: Can he interact with and tease people?

Dr B: I would say so. 

Hayden: So he enjoys life?

Dr B: Yes, in its current form. But if I were to bring him into hospital 3 times a week and connect him to a dialysis  machine I don’t think he would. 

Hayden: What’s proposed here is that we don’t close the door on a potential transplant at this stage, but we keep it open for now. Do you think that’s what [Isaac] would want?

Dr B: I can’t pretend to know what Isaac would want.

Hayden: Well you know he enjoys life. 

Dr B: Knowing [Isaac], bringing him to hospital 3 times a week is going to severely impact his quality of life. He will hate it.

Hayden: I am trying to get you away from the medical and look at the patient. [Isaac] cannot communicate his wishes and feelings in the way some 27-year-old men are able to. That doesn’t relieve me of the obligation to drill down into  what I can find about him and his wishes and feelings. I’m drawing from your evidence that the man who enjoys life  would want the best shot at maintaining it. 

Dr B: If we embarked on this treatment he would cease to enjoy life. 

We both found this interaction difficult to listen to. It seemed that Dr B was entirely focused on Isaac in the context of medical care, referring to his compliance, his insight, his behaviour, and he seemingly struggled to think about Isaac as an individual person outside the context of medical care. Whilst he was agreeing to trial HD, it was clear he had significant reservations and appeared to be even constrained by starting dialysis at certain times of the day. It wasn’t clear why this was so rigid and could not be varied to accommodate Isaac’s needs or any potential sedation. 

3. Dr C – post-operative care issues

Dr C, the Consultant Intensivist at Hospital X, was the next to give evidence. At this stage, we both had to step out of the hearing at times and therefore will only provide a summary here  based on the evidence we were able to observe.

Dr C’s evidence focused on post-operative care for transplant patients in intensive care (ICU), including the potential risks of distress and disorientation, the process of bringing a person out of their induced coma, extubation and regaining of consciousness. He also discussed the physical space of ICU, how many visitors Isaac would be allowed when he woke up, and the potential long-term effects of being cared for in ICU, such as post-intensive care syndrome.  

During her cross-examination, Ms Kohn mentioned having spoken to the paediatric intensive care consultant involved in the William Verden case (who was known as Dr Z). Further information on his evidence during the Verden hearing can be found here.  Ms Kohn explained that in the Verden case, Dr Z found it acceptable to sedate and ventilate William for two weeks, if necessary, post-transplant. Dr C was asked whether he would be confident to carry out the same treatment. 

Dr C: I think confident would be an overstatement.  I work in pediatrics with a different patient population.

Ms Kohn: if you had a 3-year-old who was acting up, you’d contemplate this kind of procedure, so do you have a view why you wouldn’t for adults?

Dr C: These are the first patients of this kind coming through…

Hayden J: Why is that? There’s no demographic reason why that should be the case.

Dr C: Because transplants are now being considered for groups of patients for whom it was not previously considered.

Hayden J: Yes I think that’s the only inference it’s possible to draw.

Hayden J then continued to ask Dr C about the treatment William required after receiving his transplant. During this exchange, some confusion seemed to arise relating to whether sedation and ventilation was considered in William’s case to to administer HD post-transplant. Ms Kohn referred to Hayden J to the useful diagram that was presented by Ms Victoria Butler-Cole KC during William Verden’s case which laid out the various treatment options that were being considered. 

After a bit of back and forth between counsel and Hayden J, there was still uncertainty as to whether one of the options was to sedate and ventilate William to administer HD. Fortunately, Dr Cronin  stepped in and provided a full explanation from her seat at the back of the court. Dr Cronin clarified that in William’s case, sedation and ventilation had been considered, as it would be required to administer plasma exchange therapy. 

Here, it’s worthwhile noting that the cause of William and Isaac’s kidney failure is extremely different. William’s diagnosis of steroid-resistant nephrotic syndrome had a much higher likelihood of leading to graft rejection post-transplant and this would have been treated by providing one or more sessions of plasma exchange. By contrast, plasma exchange was not being considered for Isaac – in this hearing the focus was rather that Isaac might require HD post-transplant and whether he would be able to tolerate it. 

4. Mr D – do no harm

The final clinical expert who presented evidence was Mr D, consultant transplant surgeon. As he later explained, a transplant surgeon’s role is primarily to decide whether a patient is suitable for transplant by looking at their anatomy, as well as, ensuring that that the transplant would be safe for the specific patient. 

In Isaac’s case, Mr D had conducted his physical exam and was also involved in the multi-disciplinary team (MDT) discussions about whether a transplant would be considered safe for Isaac. Regarding the examination, Mr D explained that he first met Isaac at Trust W’s Transplant Assessment Clinic where he spent about 30 minutes conducting an examination to determine whether there was any physical reason that would not allow for Isaac to receive a kidney. Isaac’s mother assisted Mr D by providing details of Isaac’s full clinical history. Mr D told the court that despite experiencing some difficulties he was able to examine Isaac. 

Mr D: [Isaac] was very pleasant when I saw him…we struggled a bit to get him to lie down to examine…it was a quite difficult to examine…but he allowed me to do it…

Hayden J: What happens when you try to get him to lie down?

Mr D: He wasn’t unhappy at all. He just didn’t want to sit down, he wanted to walk around. He just wasn’t co-operating in a way to allow me to do a full examination. 

Hayden J then asked Mr D to explain why the MDT had reached the decision that they would not perform a transplant unless Isaac is able to tolerate HD whilst awake. Once again, it was emphasised that there were no contraindications except safety reasons in relation to HD. As Mr D put it, “it’s not safe to go into the process of transplant without knowing [patients] can be dialysed…it’s the safety of being able to deliver dialysis or any other therapy. It’s not something we’ve entertained previously“.

Soon after this exchange, we returned to comparisons between Isaac’s situation and that of William Verden. Hayden J noted that although there was a difference in the fact that William was established on dialysis, he thought there were similar concerns between the two, taking into consideration that there were concerns about William’s behaviour towards his HD. When making this point, Hayden J was clearly erring on the side of caution and commented on the fact that he only had a document with a few bullet points explaining Verden’s case and continued to state that these points “could hardly be reflective of such a complex case”. 

Hayden J continued to push Mr D on how the MDT had reach their decision that Isaac was not a suitable candidate and put to Mr D: “In this case, you say it simply could not be reconciled with the patient’s interests, because to sedate a patient on a long-term basis throughout dialysis would be pressing your ethical boundaries.”

In response to this, Mr D explained:  

“Yes, you don’t know the length of time that dialysis will take, and the question is, would we treat adults or children differently? I think if [Isaac]’s scenario had been the same as [William’s] where there was established dialysis and the referring team was saying they are struggling with dialysis, I think that is something we would entertain because dialysis is already established.” 

Continuing to compare William and Isaac, Hayden J took the opportunity to (as he put it) play devil’s advocate. He suggested that if we were comparing patterns, then surely Isaac was in a more favourable position:  William went from compliance to non-compliance, whereas Isaac is moving from non-compliance to compliance. Hayden J did of course emphasise that Isaac’s shift from non-compliance to compliance was primarily due to the desenitisation work that was done.

Listening to Hayden J’s explanation, it was useful to reflect on how much progress Isaac had made with medical interactions since the first hearing in November 2022. During this hearing we had heard that Isaac’s fear was deeply rooted following a procedure he had when he was fourteen, and that even as an adult, his parents sometimes could not get Isaac within a quarter of a mile of the hospital as he knew every route. Yet, the recent desensitisation work had managed to overcome this, offering a glimmer of hope and Hayden J felt strongly that we should not devalue Isaac’s progress.

He returned to the comparison that Mr D had made earlier between how children and adults are provided medical treatment, leading to the following discussion: 

Hayden J: “There might be a progressive revolving understanding of the needs of adults with complex needs which is catching up with our instinctive response to offer children a chance at life. Do you think?”

Mr D: “Things evolve all the time. We’re surely doing transplant and dialysing people we would not have entertained years ago. But what we have to do, is act with the knowledge we have now, with what is the right thing and what is the safest thing. I, as a transplant surgeon did not enter transplant to not transplant people. It would be wonderful if we can transplant Isaac safely and it would be a success, but the principle is ‘do no harm’,  and that is the concern.” 

Mr D confirmed he was satisfied with the plan that was emerging in court, but whether Isaac could be transplanted would still depend on the success of the desensitisation work and whether Isaac could comply with HD. He confirmed that only then would the MDT be able to reconsider its approach to the potential transplant. 

At this point, Ms Gollop interjected and said that she had one point to make while Mr D was providing evidence: 

“[Isaac’s mother]’s solicitors had the benefit of acting on behalf of Verden’s parent and they’ve put that question directly to Dr Carnaby. They asked him ‘having provided evidence in the Verden case, do you see any difference between these two cases?‘ [Dr Carnaby’s] response was that the key difference is one of insight and understanding. Isaac’s level of disability is of such that he lacks any measurable awareness of his health condition and the risk it poses to his survival. At the time of my assessment with William he was able to engage in conversations about his kidneys – where they are, their function, and that they weren’t working as they should and the need for both dialysis and transplant. This level of understanding meant that William was able to see, to a limited extent, the need to cooperate…”

Hayden J stopped Ms Gollop and said that Dr Carnaby’s response was indeed compelling. 

Following this exchange, Mr D was cross-examined by Ms Kohn who further pushed him to explain what it was exactly about Isaac’s presentation that led the MDT to make their decision. She posed the following question: 

“…there are two elements arising out of this, the one is the ability to withstand dialysis and the other is the ability to understand the nature of the operation. The reality is that somebody like Isaac will not understand it. Can I take it that part of your reasoning is if a patient doesn’t understand it’s not ethically appropriate to do it?” 

In response to this Mr D explained his approach and understanding of treating patients with limited decision-making capacity: 

“No, the lack of understanding is the ability to cope with scenarios that arise. If there is a need for dialysis, or a need to go for a CT scan or to have another operation, if there is a level of understanding, then they may be able to comply or demonstration of complying with things that they might not understand. For instance, complying with dialysis is complying with a treatment they might not understand. To say that if someone lacks understanding, it’s not ethically right to treat them, I wouldn’t agree. Everybody has a right to medical treatment if that treatment is right and safe and proper for them.” 

After this exchange, the only aspect Mr D was left to discuss was whether there were any other impediments that would exclude Isaac from transplantation. He briefly referred to the fact that there could be other issues concerning Isaac’s bladder and reoccurring infections in the past but that neither would act as a contraindication to transplant. 

Isaac’s parents were the last people to give evidence to the court. This part of the hearing is covered in Daniel Clarke’s (forthcoming) blog post – but it was the first time we got a real sense of who Isaac was a person, rather than hearing medical evidence about risks, and what he might or might not be able to manage. It served of an important reminder for all parties as to whom this decision was for and the person that was at the heart of the discussion. 

Reflections: the options on the table[2]

This was a challenging case and the ultimate decision made by Hayden J was that it was in Isaac’s best interests to proceed with the desensitisation work and be placed on the waiting list for transplantation, albeit in suspended form, in the hope that he will become able to tolerate HD. This plan, he found, was “far more consistent with his best interests than that which had been committed to paper before today”.  The outcome was testament to the careful probing of Mr Justice Hayden to push the doctors on what the options were, and what elements of the process could be adjusted to accommodate Isaac’s needs.

Beyond these positives, however, what was apparent to both of us the ways in which the options that were available to Isaac were shaped by the doctors before the court, with certain possibilities discounted by the medics from the outset and excluded from the court’s consideration. A simple way that this happened was through three doctors simply stating they would not be willing to do certain things; they would not place Isaac on the transplant waiting list – except in a ‘suspended’ form – unless or until he is able to tolderate HD, and they would not sedate him to allow HD to take place. It is well established in case law that the court cannot force a doctor to provide treatment against their clinical judgement (see R (Burke) v GMC [2005] EWCA Civ 1003). In this instance, it meant certain options were simply not contemplated. 

A number of other possibilities were also constrained, with some concerning implications for what was possible for Isaac. 

  1. Only cadaveric donation

An interesting shift occurred from the first to the third hearing in relation to the donor options that were on the table for Isaac. Ordinarily a recipient, based on their circumstances, will be provided a choice between a living or deceased donor.  A living donor can be someone the recipient knows (known as an altruistic directed/specified donor) or it can be a complete stranger (referred to as a non-directed/unspecified donor – although various other terms exist). 

Back in November 2022, at the first hearing observed by Bonnie, we heard that Isaac’s sister was being considered as a potential donor. Hayden J helpfully reminded the court that if this was the case, he would have to understand Isaac’s perception of his sister’s best interests as part of his determination of Isaac’s best interests.

When we returned to court for the second hearing in December 2022, Isaac’s father had also indicated that he would be willing to act as a donor. At this stage, there was no certainty that either of these family members would be considered as a suitable candidate, but there was also no reason to believe that they would not pass the required assessments. As part of this discussion, the legal requirements to donate (as stipulated by the Human Tissue Act 2004) were also brought to the court’s attention.

It bears emphasising that in order for the donor to provide valid consent, they should not be coerced into the donation. All potential donors must initiate their own donation by either calling or sending a mail to their nearest transplant centre. Unfortunately, it was acknowledged in court (at the December 2022 hearing) that there had been somewhat of a ‘communication gap’ and that neither Isaac’s father nor his sister had understood that they had to take the first step and contact a transplant centre to indicate their willingness to donate to Isaac. This sadly meant that neither of them, at the time, had the opportunity to contact the NHS but we were told that Living Donation Information packs had been sent to them a few days before the hearing. Towards the end of the hearing, when Isaac’s father spoke to Hayden J, he profusely apologised that they had not made contact with the centre but explained there were so many emails going back and forth as part of the case that it made it difficult to stay on top of everything. 

Today, however, with rather little explanation, Ms Gollop confirmed that living donation pathways were no longer being considered, either via donation from a member of Isaac’s family or via an unspecified donor. As observers, we are only able to form our views based on the information relayed in Court. It might well be that there were more nuanced discussions as to why a deceased donor was the most appropriate decision, but this information was not provided in court. Despite this, we would make two observations. 

First, it was disheartening to learn in the December hearing that Isaac’s family was not made fully aware of how to approach the living donation process and the various living donation options. During the final hearing, Ms Gollop informed the court that even though his sister had been suggested as a possible donor in November 2022, some miscommunication had occurred that it was of utmost importance that pressure on the donor should be avoided. It’s worth noting that research shows that  individuals often experience difficulties when first coming forward as a living donor, and it is well-documented that barriers including knowledge on donation, patient activation, and perceived social support[3] can create inequity in access to living donor transplants. No individual should feel coerced to donate an organ and if members of Isaac’s family did not feel able to act as a donor, then it is entirely correct that this option was not pursued. However a lesson that can perhaps be learned here, especially given Isaac’s father relayed to Hayden J how overwhelming the legal proceedings can be, is that families who find themselves in a similar position could benefit from additional support and guidance on how to understand and approach the donor options in a timely manner. The living kidney donation process is difficult to navigate under ordinary circumstances, and whilst it is vital that no coercion take place, guidance and support ought to be provided from the outset ensure that a person and their family are placed in the best possible position to make informed decisions regarding living donation. 

Our second observation relates to the unspecified donation pathway. Research shows that unspecified donation is often not discussed as an option with potential recipients,[4] however the evidence suggested that this was explored to some extent. Dr A for example suggested that altruistic (unspecified) donors were a small number of the overall donor pool and that it was further complicated because the sharing scheme had to be taken into consideration. One option that was not mentioned in any of the hearings was the the alternative route of using a public campaign to find an altruistic donor.  This method is not reliant on the sharing scheme or a donation by a family member and was initially advocated for in the William Verden case; a public campaign was launched via traditional media outlets, such as the BBC, but social media platforms like Facebook have also proved to be successful in the past. It is worthwhile to note that pubic campaigns are legally valid. 

The reason why unspecified donors are often considered is because a living donation can provide for a more controlled environment. We heard in the Verden case that a controlled transplant environment is often more desirable for patients with learning difficulties and ASD – (interestingly though William eventually received a kidney from the deceased donor list). Of course we do not know whether this possibility was discussed between the family and the healthcare professionals and simply not relayed in Court. But when reflecting on how the living donation options discussed above were approached with Isaac, we cannot help but to wonder if there was perhaps a missed opportunity in this case to first exhaust all possible avenues of living donation before moving forward with the deceased donation route, or indeed run the options concurrently to maximise Isaac’s chances, as was done in William Verden’s case.

2. Transplantion only if he can demonstrate tolerance for HD

The second key limitation was the question of Isaac’s best interests in relation to transplant became inexorably linked to his best interests in relation a trial of HD, because the doctors would not list him without first establishing tolerance for HD. This limitation was ultimately accepted by the judge. It was further argued in the medical evidence before the court that no patient who could not tolerate HD would be listed for transplant – it is a standard that all patients would need to meet – perhaps as a means to push back on Hayden J’s question to Ms Gollop at the start. Whilst this might seem to be an equal approach on paper, it bears remembering that in practice, patients without learning disabilities can be listed for transplant without being established on HD beforehand. This is known as a pre-emptive transplant, and is primarily achieved by means of living donation. Due to the waiting time for a deceased donor, a recipient will often have to undergo dialysis in the meantime whilst they wait for a kidney to become available. Living donation provides an opportunity to avoid dialysis altogether, as it can be planned for in advance. In such cases, there is also a lower risk that the kidney will be rejected. 

This example demonstrates that not being established on dialysis can be no impediment to receiving a transplant, most likely to our mind, that it is assumed that such patients would tolerate it if necessary. But for Isaac, because the doctors expressed an unwillingness to list him without this evidence, he is placed in a position where he needs to actively demonstrate his tolerance for HD before transplant can be contemplated. This was further justified through comparisons to William Verden and other patients with learning disabilities and/or ASD, who were all on dialysis before transplantation. When considered in this light, it seems that Isaac, and potentially others with such disabilities, are placed in a different position where they must have dialysis before transplant, and arguably must satisfy a higher threshold (of compliance) to be considered a candidate for receiving an organ. We acknowledge the evidence of Isaac’s fear of hospitals does perhaps justify the heightened level of concern, and agree that careful decision-making is required as a transplantable organ is an incredibly scarce and much needed resources given the ever-growing waiting list. But this should not mean that patients in Isaac’s position should be overlooked or that they should be held to a higher threshold when access to transplant is being considered, and indeed raises questions as to how the process could be adjusted to accommodate Isaac’s needs.   

This also begs the question of what exactly Isaac would need to do to satisfy the doctors that a transplant would be safe – i.e., what level of compliance he would need to show to indicate a tolerance for HD. It seemed, listening to the evidence of Dr B in particular, that assumptions were circulating about what Isaac was or wasn’t capable of, that the plan would not work, and limitations were placed on what sedation could be given to cope with HD because of the challenges this would create in scheduling dialysis. This creates a concern that he might never be compliant to a level that the doctors are willing to make him active on the list. 

The question of what a sufficient level of tolerance would look like wasn’t something that was bottomed out in the court process, or what level of variable compliance would be considered management. However, it seems important to think this through carefully, given the potential different between tolerating HD and establishing Isaac on HD. The latter adheres to the scenario mentioned by Dr B, three times a week for four hours in the long term – which nobody thought would be in Isaac’s best interests. Yet if what is trying to be achieved is getting Isaac to a point where he could manage HD post-operatively, including familiarity with the machine, an understanding of the process, this seems to require a much less intensive regime, and it is not clear why establishment on dialysis as if it was the long-term treatment plan should in fact needed here to allow Isaac to manage it after a transplant operation. 

Whilst it comes as a relief that the door has not been shut to transplantation, there remains a great deal which is constrained by medical opinion and willingness. We can only hope that these questions are further explored as the desensitisation work commences, in conjunction with Isaac’s family, so he is given every chance of active treatment. 

Ruby Reed-Berendt is a PhD Candidate and Research Associate at the Mason Institute for Life Sciences and the Law, Edinburgh Law School. Her PhD research analyses mental capacity law from an intersectional feminist perspective. She tweets @rubyreedberendt

Bonnie Venter is a PhD candidate and Teaching Associate at the Centre for Health, Law and Society situated within the University of Bristol Law School. Her PhD research is based on an empirically informed evaluation of the legal and regulatory framework guiding the living kidney donation pathway in the United Kingdom. She tweets @TheOrganOgress 

[1] All quotations are from contemporaneous notes taken by Ruby and Bonnie, and then cross-checked with Celia Kitzinger’s notes from the hearing. Although we have done our best to ensure their accuracy, the quotations should not be taken as verbatim records.

[2] If you are interested in the question of ‘options on the table’, Beverley Clough has written about it further in her book ‘The Spaces of Mental Capacity Law: Moving Beyond Binaries’ (Routledge 2022)

[3] For more information on barriers to accessing living kidney donation see Living Organ Donation, UK Parliament POSTNOTE Number 641 (April 2021). Also see, Bailey PK and others, Investigating strategies to improve Access to Kidney Transplantation. 

[4] See Zuchowski M and others, Experiences of completed and withdrawn unspecified kidney donor candidates in the United Kingdom and Bailey PK and others, Better the donor you know? A qualitative study of renal patients’ views on ‘altrusitic’ live-donor kidney transplantation

A family at breaking point

By Celia Kitzinger, 23rd April 2023

This was a distressing hearing to watch because as it unfolded it became increasing clear that the parents were at breaking point in trying to care for their disabled daughter.  The Official Solicitor was clearly pushing for more support for the family from the local authority – who seem to have made some steps in that direction, but clearly not enough to prevent what the judge thought might develop into a “dramatic situation”.  

My understanding is that the court cannot order a local authority to provide additional support, but the judge emphasised his view that it would be in the protected party’s best interests that they should do so, and asked that the order be drafted to reflect that, with the hope and expectation that some additional support would be put in place before the next hearing (which isn’t for another three months).  

I had asked to observe two hearings before HHJ Marin on the afternoon of Wednesday 19th April 2023,   one at 2pm and one at 3pm, both listed as public hearings and both dealing with “Section 16 Health and Welfare”.  This refers to the section of the Mental Capacity Act that says the court has the power to make decisions if a person lacks capacity in relation to either their personal welfare or their property and affairs.

At 10.09am, I sent a request for the links to these two hearings to the email address given in the listing, and I resent my email (with “URGENT” in the subject header) when I hadn’t heard anything from the court by 13.51, just nine minutes before the first of these hearings was supposed to start.  I received the MS Teams link for the first hearing at 13:59 with a message saying “Apologies we were awaiting the Judge’s consent” – which is odd, because I don’t think there was anything for the judge to consent to.  It was a public hearing!  (The link for the second hearing followed at 14:06.) Because I received the link so late, it was all a bit of a scramble to get into court on time, but I made it for the start of the hearing, and was able to request a copy of the transparency order (which arrived at 14:09) and is in the standard terms.  This blog post is just about the 2pm hearing (COP 14062580) 

The hearing

Usually, the judge asks counsel for the applicant to introduce the people in court. In this case that introduction was done by Alex Schymyck of Garden Court Chambers who said he was acting for the applicant local authority, London Borough of Wandsworth.  The barrister for the person at the centre of the case (I’ll call her “Lizzie”) was Zimran Samuel of Doughty Street Chambers, acting via the Official Solicitor. There were also some other people in court including professionals from the local authority (one was a social worker), and (on separate screens) Lizzie’s mother and father.  

Usually the applicant barrister also provides a short background and summary of the case, as recommended by the former Vice President of the Court of Protection, Mr Justice Hayden, who points out: “Whilst the judge and the lawyers will have read the papers and be able to move quickly to engage with the identified issues, those who are present as observers will often find it initially difficult fully to grasp what the case is about’.  Unfortunately for me, this didn’t happen in this case.  (However, I was very pleased that HHJ Marin was responsive to my email – sent via the court administrator –after this hearing and before the 3pm hearing explaining that an opening summary would support transparency: at the invitation of the judge, counsel for the applicant provided an excellent summary for the 3pm case).

In this case, though,  the court moved quickly on to consider the “agreed draft order” – leaving me with no idea what it was all about.  I learnt that the order agreed between the local authority and the Official Solicitor provided for “the ICB to be joined as a party…. for a variety of further evidence to be obtained and put before the court… a s.49 order for an updated capacity report and the usual provisions regarding wishes and feelings”.  I think counsel also said that the plan was for the parents to be asked to join as a party to the proceedings. At this point, I thought the judge would just approve the order and I would be left none the wiser what it was all about. In fact that didn’t happen.

Instead, counsel for the Official Solicitor (offered the opportunity to speak after counsel for the local authority had completed his submission) referred to “a family very much struggling to cope… a vulnerable young lady on a broken bed with mould growing around her”.  He felt the court should act with “a view to helping that sorry situation” by ensuring “the right support from the applicant” so that the family is not “set up to fail”.

The judge responded by saying: “The parents are under immense pressure here and it’s really unfair to expect them to do so much.  It’s a long time before this case is back in court.  What can be done between now and then to alleviate their burden?  I appreciate the broken bed isn’t going to be sorted out in 10 minutes, but in terms of actual human support, what can be done so they can have a breather and spend time with their other children?”

“It’s within the applicant’s gift to provide support”, said the Official Solicitor, “and I know Lizzie’s mother would jump at extra support”. 

The judge checked that the parents understood the order.  Both had, apparently, attended a pre-hearing meeting at which (they said) it had been explained to them, and they were “fine with it” (father). 

The judge said: “The parties have agreed a whole package of information that will be collected so parties can sit down with all the information they need to decide what to do.  My concern is the pressure you’re both under, and the case is not back before July. What can be done between now and then to provide the family with extra support because – forgive me if I’m wrong – but it looks to me as if this family is coming up to breaking point”.

It was established that there had recently been an increase in direct payments to allow Lizzie to attend a day time respite centre, but that was only available during school holidays – which (as the judge said) meant that between now (April) and the next hearing in July “you’ve got the bulk of the caring haven’t you?”.

I realised at this point that Lizzie’s mother was becoming tearful.  “Ask the social worker”, she said to the judge: “I’m a bit emotional”.

The social worker explained that the current package involves

  • 48 nights per year at a respite centre (with one-to-one overnight care for Lizzie)
  • 20 hours per week term-time care
  • 30 hours per week during school holidays
  • 2 days per week at day respite during holidays

“That’s still very little,” said the judge, “given the high level of care that Lizzie needs. I accept the Court of Protection can only go so far, but in terms of best interests I’m wondering if I could make a declaration that the local authority and the Official Solicitor should meet and see what can be done.  If these parents break down because they can’t cope with looking after Lizzie any more, it’s going to be a much more dramatic situation – and on my reading of the papers, we’re on the road to that situation”.  He turned to the parents and told them to get in touch with the Official Solicitor’s representative “and set out what else you need”.

The mother was openly weeping and clearly distressed at this point, wiping her eyes on her sleeve.  “We’ve asked for all these things before”, she said, “but it’s never been done”.  

There was then a discussion about signposting the family to solicitors and offering them assistance in finding legal aid.  “Thank you for your very kind consideration”, said Lizzie’s father.  “We need help with our child, so we can carry on. We are trying our very best”, said Lizzie’s mother.

“All the professionals recognise that you and your husband are doing a very good job”, said the judge. “But you are being asked to do something superhuman, and it’s not fair on you.  Before the next hearing there must be a professional’s meeting about what can be done immediately. I want a recital in the order and I will be very concerned if, when we come back, I hear nothing’s been done”.  

Background to the case

After joining the hearing, I googled both lawyers and sent them emails asking for their Position Statements and received one the next day, and the other the day after that. Reading the Position Statements gave me a much better understanding of this case.

I learnt that Lizzie is a teenager who lives at home with her parents and two siblings and has a diagnosis of “spastic quadriplegic cerebral palsy affecting all four limbs, developmental delay, asthma and occasional focal seizures, food allergy, severe speech and language impairment and severe learning difficulty…. [She] has significant mobility difficulties and often falls to the floor. She requires 1:1 at all times.”  

This case started (I think only a few months ago) when the local authority made a court application to authorise Lizzie’s deprivation of liberty in a specially-designed cot bed with doors on all sides that cannot be opened from the inside.  This is to prevent Lizzie from falling out and suffering harm during the night – and Lizzie’s parents support its use.

But when the Official Solicitor’s representative visited Lizzie at home a few days before the hearing, the parents told him that the bed is not safe. It needs servicing.  There is mould in Lizzie’s bedroom and bathroom. It became clear that the parents were struggling. The mother stated that everything looks good on paper, but that’s not the reality. Carers don’t show up, they’ve asked for training on restraint and none has been provided, they haven’t had a carer’s assessment since before the pandemic, and Lizzie is sometimes self-harming.  The Official Solicitor concluded “there is concern for the long-term stability of the care package. It is recorded in the care plan [Lizzie’s mother] seems as though she is burning out…. The applicant is requested to consider a carers assessment on her to consider how she can be supported…. For example, Lizzie loves music, it could be explored if there are any music groups she can attend… Lizzie gets distressed when she is unable to mobilise [and] it may be that the applicant can explore how they can support Lizzie to mobilise…. It is submitted that there needs to be a deeper exploration into the behavioural issues Lizzie has….”.  The Official Solicitor also wanted consideration of adaptations to the garden to support Lizzie in accessing the garden with minimal support (the parents would like to put in a sensory garden for her).  There is a long list of “further evidence” required along these lines (including reports from Lizzie’s occupational therapist, physiotherapist, speech and language therapist, and from her school) to try to work out what support she needs.

It seems as though a case that started as a relatively contained single-issue case concerned with “authorising the deprivation of liberty arising from the arrangements for Lizzies accommodation and care”, i.e. the cot bed (according to the Transparency Order issued on 13th March 2023) has become, just over a month later, a much broader concern about a care package at risk of collapse.  It was good to see that the Official Solicitor and the judge recognised the family’s situation and were doing what they could to address it.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 420 hearings since 1st May 2020 and is a prolific blogger.  She is on LinkedIn (here), and tweets @KitzingerCelia

Opaque justice in the Court of Protection: A dispute about the validity of Lasting Power of Attorney

By Daniel Clark, 21st April 2023

At 2pm on Friday 14th April 2023, I observed a directions hearing (COP 13795316) via MS Teams before Deputy District Judge Chahal sitting at First Avenue House in London.

I simply couldn’t follow it.

Wittgenstein’s notion of language-games proposes that language only has meaning when applied in its context. In other words, it is action that establishes meaning. In the context of the Court of Protection, ‘open’ and ‘transparent’ only has meaning when it is connected with actions that make its work open and transparent. Simply admitting observers to a hearing is not enough: the hearing itself must be accessible to observers. One way that this can be done is by way of an introductory summary. The (former) Vice President has advised that an introductory summary is good practice, particularly because, ‘Whilst the judge and the lawyers will have read the papers and be able to move quickly to engage with the identified issues, those who are present as observers will often find it initially difficult fully to grasp what the case is about’.

That was certainly the case in this hearing.  In this blog I will first explain how the lack of an introductory summary resulted in a very confusing experience for me as a public observer;  then I’ll explain the background to this case (only possible because one of the parties kindly sent their position statement); and then describe the substantive content of this brief hearing. I’ll end with some brief reflections.

My experience of the hearing

I knew, from the listing, that this hearing concerned a dispute about Lasting Power of Attorney (LPA).

A Lasting Power of Attorney is a legal document wherein someone (a ‘donor’) appoints attorneys to make decisions on their behalf at a possible future time when they will lack mental capacity to make those decisions. There are two (separate) types. A health and welfare LPA concerns decisions such as those regarding medical care, including life-sustaining treatment, and residence. A property and financial affairs LPA concerns financial decisions, such as the paying of bills or selling a home. The donor must have the mental capacity to make the decision about the LPA when they sign the documents. 

LPAs are a very good way to ensure that, should you be unable to make a certain decision in the future, someone you know and trust will be able to make decisions in your best interests. It is worth pointing out that each LPA has a fee for registering. I mention this because despite knowing quite a lot about the intricacies of LPAs, the fee came as quite a surprise when a family member was registering their LPA. There are exemptions and reductions available, so you can still apply even if you may need financial assistance. 


I was sent the transparency order along with the link to the hearing well in advance, which is unusual and positive. This instilled in me a sense of optimism, and I felt that this signalled a clear commitment to open justice. 

At the beginning of the hearing, DDJ Chahal immediately acknowledged the presence of two public observers. However, this was only to tell us not to record the hearing,  before she dove straight into the substance of the matter. The judge was clearly familiar with the material, and did not ask Counsel for an introductory summary.

This had two negative effects. 

First, I had no idea what the actual substance of the disagreement between the parties was and it took me some time to work out who the barristers were representing, which made the hearing almost completely inaccessible.  

I knew from the transparency order that the applicant was the Public Guardian, and that there were four respondents. I deduced, from the fact that Courtney Step-Marsden was the first of the Counsel to address the judge, that she was the applicant representing the Public Guardian. I later deduced that Joss Knight, the other Counsel present, was representing the first and second respondents. 

However, that’s all I was able to know for definite. 

Due to the lack of introductory summary, I wasn’t able to follow the discussion between the judge and Counsel, and I wasn’t entirely clear what the nature of the disagreement was. I thought that this was a dispute about one LPA though, as I will discuss below, this was wrong. 

When public observers are admitted to a hearing, but no attempt is made to ensure they will be able to follow it, they are essentially being admitted as an act of lip service to the idea of transparency. This is not open and transparent justice; instead, it is closed and opaque justice. 

The second problematic effect of the lack of introductory summary is to do with the role of the protected party. It’s widely accepted that the protected party (P) should be at the centre of decision-making in the Court of Protection. However, it struck me at the end of the hearing that I did not know who P was – he was almost completely absent from the discussion. Counsel and the judge discussed ‘the LPA’ and ‘the Order’ but didn’t once circle back to P. 

Of course, this is probably because this is not the first time the parties have been in Court. Nevertheless, I feel very strongly that introductory summaries not only make hearings accessible to the public but also inevitably have an effect of re-establishing P as the person at the centre of the decision-making. But in this case, I didn’t notice a single mention of P: I didn’t even know he was a man until I was sent a position statement. 

This hearing was listed for one hour but only took half an hour. An introductory summary would have added a couple of minutes but would have ensured these proceedings were open and transparent for observers. In an email, Counsel for the Public Guardian wrote that they were instructed not to send the position statement of their client, and apologised that ‘the judge did not provide an opportunity for an introductory summary’.

It is regrettable that this was not done, and another observer has written about a similar experience with the same judge. However, I think it’s important that Counsel remember that they can offer to provide introductory summaries whether or not the judge signals that they should. Indeed, that happened in this case.


Background to the case

I am grateful to Counsel for the first and second  respondent (R1 and R2, two of P’s adult children) for sending me their (joint) position statement, which has allowed me to report on the details of this case.

P is a gentleman in his eighties who is living with late-stage dementia. He currently resides in a care home that provides specialist dementia care, and he is physically frail but receives commendable care. 

Strictly speaking, this case begins in 2016 when P appointed R1 and R2 as his attorneys for property and financial affairs. Three years later, he appointed them as attorneys for health and welfare. Then, a year later, ‘there was an attempted deed of revocation’ (quote from the position statement) of both LPAs (in effect, an attempt to make the LPAs null and void). 

But that same year, a doctor appointed by the Office of the Public Guardian (OPG) concluded that P ‘lacked capacity to execute the deeds of revocation’, and the OPG rejected them.

However, a month later, a revocation of the LPA for health & welfare was ‘produced’ (again, this is quoted from the position statement), and P signed a new (purported) LPA. This LPA appointed the 3rd and 4th respondents (R3 and R4, another of P’s adult children and P’s partner respectively) as attorneys for health & welfare. Finally, in mid-2021, the OPG applied to the Court of Protection in order to determine the validity of both the revocation and the new LPA. 

I do acknowledge that there’s some ambiguity in the above timeline. The position statement does not mention who attempted the deed of revocation, and what the attempt consisted of. Furthermore, the position statement does not explain who produced the final revocation. There is mention of a full chronology, which I assume clears up these ambiguities but I (of course) did not have access to that.  

The position statement explains that R3 does not challenge the original rejections of the deeds of revocation, and all parties accept the LPA for property & financial affairs first signed in 2016. 

The dispute, therefore, is whether P had capacity to revoke the original LPA for health and welfare, and appoint R3 and R4 as attorneys for health and welfare in a new LPA. It is the position of R1 and R2, as well as the Public Guardian, that P did not have capacity to do this.

Hearing of 14th April 2023 

In addition to the judge (DDJ Chahal) and the two lawyers, Courtney Step-Marsden of Outer Temple Chambers for the applicant, the Public Guardian and Joss Knight, of St John’s Chambers, for the first and second respondents), there were three other people present (on one screen, seated around a table) who I could not identify but who I think included at least one of the respondents. R3 and R4 were not present.

The Judge was clear from the outset that “this was only ever intended to be a directions hearing”. She did not have all of the information because not all of the relevant assessments were in the bundle, and therefore she was “not in a position to make an order”, not least because the parties disagree. 

Counsel for the Public Guardian explained that “there won’t be much further in terms of evidence”, and that the Public Guardian is broadly in step with the view of R1 and R2.

Counsel for R1 and R2 acknowledged that “there’s certainly contest between the parties”; namely, between the Public Guardian, R1, and R2 on the one hand, and R3 on the other. It was mentioned later in the hearing that nobody has been able to ascertain a position from R4, possibly due to ill-health. 

At this point in the hearing, it became clear that R3 had initially signalled her intention to attend but, when submitting her position statement the day before, said that she no longer would be attending. What was also clear was that R3 is diametrically opposed to the Public Guardian, R1, and R2: she wants the Court to appoint a deputy to make decisions. 

Counsel for R1 and R2 explained, “my position is that…the third respondent wants to make various allegations and comments about the first and second respondents”, wants the Court to make final orders without being present, and “doesn’t appear to question the LPA.” R1 and R2’s position statement states that ‘none of this bears any relevance for the hearing and the proceedings….no concerns have been raised…about R1 and R2’s ability to carry out their duties under the LPAs’. Furthermore, the OPG has previously expressed the belief that it was not in P’s best interests for a deputy to be appointed. In sum, Counsel state that “this is a case where the Court should grasp the nettle and do what it will inevitably do.”

The Judge, however, disagreed. As the missing assessments were from R3, and apparently deal with the question of capacity, she would not make an Order. She decided that whilst there was no need for any further witness statements, she is going to give the opportunity for R4 “to file a witness statement within 14 days of the order”.

Finally, Counsel for R1 and R2 suggested that the Order from this hearing should encourage R3’s attendance at the next hearing. He was concerned that parties will prepare with the expectation that R3 will be present, and that they will be left in a similar situation of R3’s unexpected last-minute non-attendance. The Judge agreed to this, saying “if you indicate when position statements should be filed, and bring them forward a couple of weeks, that should notify us of the third respondent’s position”.

This case will return to Court, virtually, at a date to be set.  

Reflections
There are three things worth remarking upon. 

First, this situation has been going on for quite some time now. I find it quite remarkable that concerns about the validity of somebody’s LPA have been allowed to continue over a couple of years, during the course of which many decisions must have been made about health and welfare matters without any clarity about who should be making them.  It seems to me there has been an unacceptable delay. 

Second, knowing about this case is clearly in the public interest. This case illuminates the tensions within the role of the LPA, and the relevance of mental capacity in the making (and revocation) of LPAs. The substantive content of this case could be quite educational for members of the public who are considering appointing LPAs, as well as those who are acting as LPAs.

Finally, the experience of observing this hearing has demonstrated to me that there is still more work to be done in making the work of the Court of Protection open and transparent. I am grateful to Counsel for R1 and R2 for providing me with their position statement but I find it disappointing that the Public Guardian instructed their Counsel not to do so (especially given that their position is much the same). And of course, an introductory summary would have made the hearing much more accessible: judges and Counsel should aim to ensure that an introductory summary, in line with the advice from the (former) Vice President is provided, for the benefit of observers and to re-centre the discussion around P. It doesn’t need to be long; it just needs to allow public observers to be able to understand what we are hearing. 

Daniel Clark is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research takes seriously Iris Marion Young’s claim that older people are an oppressed social group, and is funded by WRoCAH. He tweets @DanielClark132

Unplanned disclosure and (still) no agreed ‘exit plan’: Re A (Covert medication: Closed Proceedings) [2022] EWCOP 44 continues

By Celia Kitzinger, 18th April 2023

The case concerns a 23-year-old woman (“A’), deprived of her liberty in a residential placement against her wishes, who is being given medication, covertly, that she consistently says she doesn’t want.  

The court has already made declarations that she lacks capacity to make decisions about residence, care, contact, and medical treatment (as a result of a Mild Learning Disability and Asperger’s Syndrome, plus ‘undue influence’ from her mother).  This was based on the report of an independent expert, back in September 2018.

She’s been refusing treatment for primary ovarian failure (also known as primary ovarian insufficiency).  The recommended treatment is hormone medication designed to ensure, first, that she goes through puberty, and then to reduce the risk of osteoporosis, cardiovascular disease and other health conditions associated with this diagnosis. Due to covert medication, she has now gone through puberty, but doctors recommend ongoing ‘maintenance’ treatment for the next thirty years or more.

Every day for two years she’s been offered the prescribed hormone treatment tablet and every day so far, she has declined to take it. That’s more than 700 treatment refusals. Each day, she is then given the medication covertly via her food or drink. 

The problem the court, and the professionals caring for her, face now is how to manage the situation long-term.  Obviously,  she can’t be kept in a care home and covertly medicated for three decades.  The question weighing on everyone’s mind is whether and how to tell her that she’s been covertly medicated, and how to persuade her to take the maintenance medication voluntarily.  

In an earlier judgment, Mr Justice Poole said that covert medication was “unsustainable in the long run”.  He directed that:
 “… a treatment plan should be devised, for review by the court, for how to exit the covert medication regime with the least possible harm being caused to A. The plan will cover the question of imparting information to A about the past use of covert medication – should that be done and if so, when, where and by whom….” (§48(iv) Re A (Covert medication: Closed Proceedings) [2022] EWCOP 44  15 September 2022)

The judge laid out detailed directions as to the work that needed to be done on this in preparation for a hearing in November 2022, but in the event, very little progress had been made by the time of the November hearing. and the judge expressed his disappointment with how little had been achieved.

So, the hearing of 13 March 2023 was primarily concerned with the same thing – what was the plan for telling A about the ongoing covert medication, and how was she to be persuaded to take it voluntarily. 

Background

When someone lacks capacity to make their own decision about whether or not to take medication, and they are refusing to take it, and attempts to persuade them have failed, carers are faced with a choice: either abandon the attempt, or hide the medication in the person’s food or drink so that they take it without knowing.

Each case is different.  The benefits of medication (or the risks of not taking it) vary depending on what the medication is for and the physical health of the patient.  These benefits need to be weighed up against the harm caused by deceiving the patient, and violating their wishes by secretly administering the medication they’ve refused.  There are other risks of covert medication too: unknown or variable amounts of medication may be ingested; the person receiving it cannot monitor possible side effects; and there’s also the risk of the patient discovering the pill ground up in the yoghurt or dissolved in the apple juice – and losing all trust in the people who are caring for them. 

Covert medication can be lawful if it’s determined to be in the best interests of someone who lacks capacity to make decisions for themselves, and in this case the young woman has been assessed as not being able to understand, retain or weigh the information necessary to make a capacitous decision about medication. (For a lawyer’s view on covert medication, take a look at the blog post by Aswini Weereratne KC.)  In this case, it’s lawful because a judge (HHJ Moir) considered the evidence, decided that A lacked capacity in relation to medication, and ruled that covert medication was in A’s best interests – and also that it was in her best interests that she should remain in residential care and have no contact with her mother, who was considered to be a bad influence on her, and that her mother should not be told about the covert medication. It was feared that the mother would tell her daughter about the covert medication, and that she would then stop accepting food and drink from carers.

The judge, HHJ Moir, made these decisions in a secret closed hearing – a hearing that wasn’t open to the public, and that neither the mother, nor the mother’s legal team, knew anything about at the time.  The case is now before a different (more senior) judge, Poole J, and is being heard in public.

This has been a long-running and complex case.  Observers blogged about hearings we’d watched in May 2020 before covert medication was authorised, and then in April 2022 after covert medication had been authorised but we didn’t know that it had because the court deceived the mother and her legal team into believing that her daughter was not being medicated, and we were deceived too (see “Medical treatment, undue influence and delayed puberty”).  In October 2022, we discovered the true facts and published a correction (“Statement from the Open Justice Court of Protection Project concerning an inaccurate and misleading blog post”). 

This case has raised challenging issues about covert medication.  It’s also highlighted the way in which the Court of Protection can use secret (‘closed’) court hearings to make decisions without family members being present and without them even being told that a hearing is happening – and how this can breach a family member’s rights to a fair trial.   We raised the alarm about ‘closed’ hearings when we discovered what had happened in this case, both via our blog post (Reflections on open justice and transparency in the light of Re A (Covert Medication: Closed Proceedings) [2022] EWCOP 44) and on the Radio 4 Law in Action programme (“Secrecy in the Court of Protection?” 27th October 2022).  The matter was then considered by a sub-committee of the Court of Protection Rules Committee (to which I made a submission: Closed Hearings: Submission to the Rules Committee).  In February 2023, the (then) Vice President published new Guidance on closed hearings.

Meanwhile, hearings for this young woman continue.

The last hearing was in November 2022 and it felt (as I wrote in my blog post, “No ‘exit plan’) “thoroughly dispiriting”.  Despite the efforts of counsel for the Trust (Joseph O’Brien KC) to inject a note of positivity into the proceedings by reminding everyone that the strategy of covert medication and secret hearings had “worked” and been “successful” (in the sense that A has now gone through puberty, which was certainly a key goal), the tone of proceedings felt (to me) rather muted and despondent.  The positive aspect (attainment of puberty) has to be weighed against the deception that has been involved and the public opprobrium the case has occasioned.  

I was very concerned, as was the judge, that no adequate and agreed exit plan had been put before the court, in line with his directions, at the November hearing. The judge pointed out – as he had previously – that if A were to discover in an unplanned way that she’d been treated without her knowledge and after explicitly refusing treatment, this could be harmful to her: the longer covert medication continues, the longer that risk continues.  At the end of the November hearing, it was agreed that there would be a hearing in mid-March at which (the judge said) the court will “review the updated medication plan, its implementation, issues of contact and whether there’s a need for any directions in relation to the residence application”. 

The hearing of 13th March 2023

This case (COP 13236134) was heard, remotely, at 10.30am on 13th March 2023 before Mr Justice Poole, sitting in Leeds.  

The parties and their representatives were the same as at the previous hearing. The applicant local authority was represented by Jodie James-Stadden.  The first respondent, the protected party in this case (“A”), was represented (via her litigation friend the Official Solicitor) by Sam Karim KC.  The second respondent was A’s mother, represented by Mike O’Brien KC. The third respondent was the hospital trust, represented by Joseph O’Brien KC.

A key part of this hearing was supposed to be a review of the updated plan for moving from the current position in which A is being given involuntary covert medication, to the ideal position in which A voluntarily agrees to take medication.  Some work had been done on this plan during February – but 10 days before the hearing (on 3rd March 2023), the situation suddenly changed.  Staff conducting an ‘educational’ session with A informed her that she had reached puberty. This hadn’t been anticipated in the plan, so it’s back to the drawing board to determine how the plan should now be developed. There is an additional problem now in that A seems to believe that, as she has gone through puberty ‘naturally’ (she has no reason to believe otherwise), she does not have Primary Ovarian Failure (POF).  The Multi-Disciplinary Team (MDT)  “is now required to decipher how to overcome A’s resistance in accepting the diagnosis of POF” – and with it, the need for continued endocrine treatment (Official Solicitor’s Position Statement).

Instead of reviewing an updated plan, the hearing covered a number of issues that I’ll deal with separately: (1) transparency matters; (2) the unplanned disclosure to A that she’s gone through puberty; (3) expert reassessment of A’s capacity and related issues; (4) contact between mother and daughter; (5) permission to appeal out of time against earlier decisions by HHJ Moir.

1. Transparency Matters

I almost didn’t get to observe this hearing because it hadn’t been listed properly.  This is a repeated problem when Tier 3 judges (who usually hear cases in the Royal Courts of Justice in London) sit in other courts across England and Wales.  These hearings are not included in the Royal Courts of Justice cause list (which is where we normally find Tier 3 judges’ hearings) but are supposed instead to be listed in the Court of Protection list in CourtServe – which is the only way for members of the public to find out about court hearings outside of London.  They are often not there.  I’ve blogged about the problem previously (e.g. here) and raised it with the (former) Vice President and with His Majesty’s Courts and Tribunal Service (HMCTS).  I’ve also written previously to Poole J about this very problem when it affected a different hearing before him.

Poole J opened the hearing by stating that it had been “noteworthy, given the history of the case” that he’d not received any observer requests and that he’d learnt it was “because of the way it’s listed”, which he described as “an unsatisfactory situation” that  occurs “regularly” and “needs to be remedied”.  I’m very pleased (finally!) to see a judge take listing problems seriously and hope communication with HMCTS  from Poole J might be more successful than my communications with them in effecting change. I only found out about the hearing when the judge’s clerk emailed me shortly beforehand to let me know it was happening, and I was able to drop everything and attend. (I think the judge also delayed the start of the hearing by 45 minutes to allow me to be there from the beginning.)  I’m very grateful to Mr Justice Poole for supporting open justice in this way – but of course it shouldn’t be necessary – and other members of the public who wanted to observe hearings in this case were excluded because it wasn’t listed correctly.

I also note that there continues to be a draconian set of reporting restrictions relating to this hearing.  In addition to the usual restrictions on identifying the protected party at the centre of the case, and her family members, we are prohibited from identifying the public bodies (the local authority and NHS Trust) and the expert witness (Transparency Order signed by Mr Justice Poole, dated 15th September 2022). 

2. Unplanned disclosure to A that she’s gone through puberty

Counsel for the local authority said that the plan had been that A was not to be told that she’d achieved puberty “and if she raised questions that was to be taken back to the MDT for responses to be formulated”.  Now that – contrary to the plan – she has been told she’s gone through puberty, “there needs to be an urgent MDT to revisit the plan”. Meanwhile, everyone agrees (said counsel) that the maintenance medication should continue to be given covertly while the MDT works out “what narrative she is going to be told”.  

“At the moment, there’s a confusing narrative before her, as she’s been told she has POI and that without taking the medications – the medications she’s been offered and refused daily – she would not experience puberty.  Now she’s been told that while she still has POI, she has experienced puberty – and she’s gone through puberty without taking medication, as far as she’s concerned.  That is a difficult and inconsistent position to be in.  The MDT needs to reconsider the plan and come up with a coherent explanation to help P make sense of what is happening to her.” (Counsel for the local authority)

The mother’s Position Statement describes what happened in more detail.  

“At a session on 3 March 2023, A suggested to health staff that she had breasts and that she had therefore reached puberty.  A therefore now knows she has reached puberty.  Staff implied it had occurred naturally in order to keep the covert medication secret from her.  They said she continued to need to take the medication for her heart and bones.  It looks like A was left with the impression that she had achieved puberty naturally but late and therefore she seemed to think she did not have Primary Ovarian Insufficiency (‘POI’ or ‘POF’).”

The Position Statement goes on to quote from an email from the local authority’s solicitor describing what was reported to him about the conversation with A.  Apparently during the course of a health education session involving a talking mat, A was asked what Primary Ovarian Failure was and placed the response “a ladies breast will grow” (sic) under the “don’t know/depends” category.  She was then informed that “if you have POF breasts won’t grow” and “immediately questioned this as she stated I have breasts”. Asked whether she thoughts she had gone through puberty, A said, “I’ve not given it a thought, but subconsciously thought I had. But I don’t have the problem [i.e. POF]”. When told she does have a diagnosis of POF, “she continues to fail to accept the diagnosis”.  One of the professionals working with her explained that she’d gone through puberty later than other girls and explained that a review of her medical records confirms the diagnosis, to which A said, “You are going to say something completely different to what I’ve said in an extremely long-winded way”. 

Her mother is concerned that A has been told that puberty happened naturally but late, and consequently thinks she has not got POI and does not need medication to deal with it. She’s also worried that A will guess that she’s been covertly medicated. She wants to be involved in explaining to A why she should (voluntarily) take the maintenance medication, and believes that she would be able to persuade her – whereas professionals have failed to over the last four years.  She’s currently forbidden to talk to A about medication issues.  This is because the  MDT members distrust A’s mother, and don’t believe she really wants A to take the medication. The Trust “continues to have some concerns as to whether [the mother’s] wish to support A in taking the maintenance medication reflects a genuine recognition and acceptance on her part that such medication is life sustaining and enhancing for A” (from the Trust Position Statement).  

In court, Counsel for the mother described “an incident on Friday where A confronted her mother about the fact that she’s reached puberty”.  He said:

“[Mother] had been picked up in a bus with two care staff and A joined them.  She turned to her mother and said she’d been told she’d achieved puberty and she was wondering why, then, she was still detained and whether she could come home.  [Her mother] realised that carers had reacted in some alarm, and said ‘what can I say?’. Carers then cut off the discussion and [the mother] changed the conversation to what they were doing next.  So this signals that A is well aware of the implications of having achieved puberty, and her mother is concerned about this.”

He added that the concept of covert medication is not new to A and that – at some time in the past – she had avoided drinks that could have been tampered with in this way and insisted on bottled water.

The judge intervened to say simply (as he has said before) that “covert medication cannot continue for ever.  It is not sustainable in the long term. It is best that it should come to an end in a managed way.”

Counsel for the Trust was also concerned that “A believing that she has gone through puberty without medication may lead her to become entrenched in her position that she does not need maintenance medication”. Despite concerns about the mother’s involvement, he accepted that she did now need to be involved in the collective effort to “get A on side in terms of taking medication voluntarily”. 

The Official Solicitor (appointed to represent A’s best interests) now believes that the mother “must be intrinsically involved, and be at the forefront, of any plan that seeks to promote A accepting the diagnosis of POF and the need for treatment… Her positive involvement is of magnetic importance”. 

So, the matter of the revised plan (with the mother centrally involved) will return at the next hearing.

In the closing judgment, Poole J said that the situation needed to be handled both with urgency and with delicacy, sensitivity and professionalism.  He directed that there should be an MDT meeting and then a round table meeting with the legal representatives from all parties with a focus on communication with A and formulation of involvement of the mother.  “The ideal outcome is that A will accept maintenance medication in a sustained way for the rest of her life. That will be achieved most easily – or most effectively, I should say, not easily! – in full knowledge of the truth.  The worst outcome is that she finds out inadvertently and reacts with hostility.  I leave it for the professionals to work it out and the plan will be reviewed by me in four to six weeks from now.”

(3) Expert reassessment of A’s capacity and related issues

The impetus for reassessment of A’s capacity (in all the relevant domains) came from the Official Solicitor.  It was motivated, in part, by the independent expert’s observation (back in September 2018) that “A may gain capacity having regard to her young age, and if a range of support structures are in place to empower A, including increasing her skill-base and knowledge”. The expert also said that “achieving puberty may improve cognitive maturation and help her to gain capacity”.  An independent expert could also be asked to consider related issues e.g. the likely consequences of A being informed that she’s been covertly medicated, why she’s resistant to treatment, and what can be done to change her mind. 

Counsel for the local authority said they were neutral on the subject of an expert being appointed, but were “not convinced that further professionals are going to assist in the mix”.  The local authority has “some concern with overwhelming A with professionals, as she is quite resistant”.  However, if there is to be appointment of an expert, then they are in favour of appointing the same one as last time.

Counsel for the mother said there were fears that A would not cooperate with the previous expert and that “a new set of eyes” were more likely to elicit her cooperation.  The mother would also like the  expert appointed to assess the effects on A of a four-year separation from her family.

The Trust took the position that this was an appropriate time to revisit capacity because “the current evidence is quite old” and “puberty may be relevant to her cognitive functioning”; and that there are compelling reasons for appointing the same expert as previously because “he knows the background; he is aware of the relationship between mother and daughter; he knows where to tread delicately.  There are considerable dangers in inviting another expert without that knowledge and experience”.  This seemed to resonate with the judge who said he “wouldn’t want the involvement of an expert assessing capacity and having to discuss issues of medication with A at this delicate time to interfere with the MDT process of deciding what information should be imparted and how.  “This sounds disrespectful but (laughs), I don’t want an expert crashing in, as it were, on this delicate process”.  With the previous expert, it seems, that is “less likely to happen”.  Counsel also said that the Trust “don’t see the point of asking the expert to look at the impact of four years separation from her family – that’s not relevant to capacity or to the medication plan”. 

In the closing judgment, Poole J said that he had to be satisfied that it was “necessary” before appointing an expert to give further evidence.  “On the issue of capacity, I am persuaded it’s necessary.  She’s achieved puberty and it was foreseen in earlier expert evidence that changes and maturation of the brain with puberty may impact on her capacity. I am not persuaded that the other issues floated need to be revisited but an assessment of capacity, especially in relation to residence, care and treatment, is necessary.  As to the identity of the expert, Mr Mike O’Brien says on behalf of the mother that A distrusts the expert who saw her last time, but he has knowledge of the context and there is a benefit to continuity.  The qualification is that he should not meet A until after the next hearing.  Priority should now be given to providing information for A.  I am a little fearful that involvement of an expert, even [the same one as last time], at the same time as that process is ongoing could disrupt it inadvertently.”

4. Contact between mother and daughter

Current contact arrangements are two half-hour supervised telephone calls a week, and supervised weekly face-to-face visit of one hour, with discretion to extend that up to two hours.  Contact has generally gone well, and the mother would like to increase the weekly visit for up to three hours.  She also wants A to be able to attend her grandfather’s funeral.

Counsel for the local authority said they do not recommend any changes to the contact arrangements because “the focus should be on enhancing the health promotional work, and there shouldn’t be additional distractions to A at the present time. She has an awful lot going on at the moment. She’s been informed she’s gone through puberty. Her grandfather passed away a week ago, and there’s the suggestion of additional experts. So, the local authority would prefer to restrict contact to up to two hours and review this in four to six weeks.”

Counsel for the mother said that in fact contact has never been two hours:  “the longest visit has been an hour and a half”.  He drew attention to the Official Solicitor’s view that the mother’s involvement in persuading A to agree to maintenance medication is of “magnetic importance” and said  that longer visits would make it more likely that the mother can fulfil this role.  “[Mother] knows A can be stubborn and difficult, particularly about professional advice.  It may take her a bit of time, but she thinks she can persuade her.” 

In the closing judgment, Poole J reflected on the fact that contact has gone well.  “There’s no evidence that [A’s mother] has given inappropriate information. This is a suitable time for contact to be extended to supervised face-to-face contact once a week for up to three hours. Arrangements should also be made for A to attend her grandfather’s funeral.”

(5) Permission to appeal out of time against earlier decisions by HHJ Moir

Counsel for the mother asked for permission to appeal against the decisions made by HHJ Moir in the closed hearing of 25th September 2020, from which the mother and her legal team were excluded.  He set out detailed reasons why permission should be granted.  The judge did not grant permission and gave a full and separate judgment giving his reasons for not granting permission to file an appeal.  A transcript of Poole J’s decision will be made available to the parties and (the judge has said) to me when it is ready.  I will blog separately about this aspect of the hearing when I have received the transcript and can be sure that I am entirely accurate in reporting the reasons for the judge’s decision.

Concluding remarks

In his closing judgment, Poole J effectively pursued the same line of reasoning as in previous hearings.  He remains concerned that A might realise that she has been covertly medicated and lose all further trust in professionals.  He wants a plan as to how she is to be told about the covert medication and an ‘exit plan’ to enable a move from covert to voluntary medication.  He continues to request this of the MDT,  which has so far failed to provide an adequate (and agreed) plan despite this having been requested since November 2022 – and subsequent events have overtaken the draft ‘exit plan’ they had expected to present to the court.  He’s also increased face-to-face contact between mother and daughter, which is surely necessary given the central role the mother is now envisaged as having in implementing the ‘exit plan’ with her daughter.  Meanwhile, covert medication remains in place, as does A’s deprivation of liberty which the judge considers “necessary, proportionate and in her best interests”.  The question of where A will live “will be considered once there’s more clarity on the use of medications and communications with A”.  

It seems to me that the court is now in the unenviable position of trying to help the MDT extricate itself from the entirely untenable situation it’s in following the directions of HHJ Moir.  I am left wondering how everyone thought this would be brought to a satisfactory conclusion.  What  ‘exit plan’ was envisaged at the point the judge set the wheels in motion for covert medication?  Nobody can have imagined that A could be detained and covertly medicated for the next 30 years – but nobody seems to have planned for any alternative.  

Celia Kitzinger is co-director of the Open Justice Court of Protection Project.  She’s personally observed more than 420 hearings. You can follow her on Twitter @KitzingerCelia

After the kidney transplant: The view from “Team William”

By Ami McLennan, 16th April 2023

Editorial note:  This is a blog post by Ami McLennan whose son, William Verden, was at the centre of Court of Protection proceedings in 2022.  The key issue before the court was whether it was in William’s best interests to have a kidney transplant (if a donor could be found so that this would be possible).  Several observers blogged about the hearings from a range of difference perspectives (e.g. Introducing an upcoming hearing: Is a kidney transplant in his best interests?; Is a kidney transplant in his best interests?; Listen to him, listen to his mother: The William Verden hearing; Advocacy in the William Verden hearing: Observations from a trainee barrister).  The judge concluded that a transplant would be in William’s best interests.  The judgment is publicly available: Manchester University NHS Foundation Trust v William Verden & Amy McLennan [2022] EWCOP 9.  (Note: There’s an earlier judgment which explains why  – unusually – we can name William and identify him publicly: Manchester University NHS Foundation Trust v Verden & Anor [2022] EWCOP 4).  The transplant took place on 7th August 2022.  In this blog post Ami McLennan reflects on the circumstances that led up to the court case, and brings us up-to-date on what’s happened since William had his kidney transplant.  

In December 2019, my son William Verden was diagnosed with a rare kidney disease which required kidney dialysis to keep him alive. He also has autism and a learning disability. This means he finds it more difficult to cope with going to hospital and receiving medical treatment. 

William began to show signs of anxiety and occasionally aggressive behaviour while he was in the hospital as an inpatient for an infection whilst on peritoneal dialysis.  It was all unknown to William and he had no idea he was so poorly and no idea why he was there.  Due to William’s needs, he requires time to process things and it’s very important he’s given the opportunity to do this. Whilst receiving dialysis, clinicians were frequently unable to complete some of the tests required, such as taking William’s blood pressure every 30 minutes as William would present in an anxious manner, due to needing the time to process what is happening. Many routine medical procedures, when not carried out with proper concern for William’s needs, could cause William to behave in ways that professionals find challenging. I felt that some doctors and nurses became agitated because they were unable to complete tests in what is deemed a ‘normal’ timeline. 

Clinicians felt that it was not in William’s best interests to continue on haemodialysis, which was the next best available treatment, as the peritoneal dialysis was not working properly; the only alternative options proposed were  kidney transplant or palliative care. We were told by his clinicians that William’s behaviours were so aggressive that he would not tolerate dialysis long-term and would not be able to cope with the care needed post-transplant, without a long period of sedation and ventilation in the Intensive Care Unit.  

I was devastated by the news that there appeared to be no active treatment options available for William. I was told that the risks of the period of time in intensive care were likely to outweigh the benefit of William receiving a new kidney.  So that left palliative care.  I felt angry and upset – his life didn’t seem to matter because he was thought of as “broken”. But surely, he deserves the same chance at life as anyone else.

There was a delay of a year before William was put on the transplant list, while doctors continued to recommend the palliative care route, which was very wrong in my opinion. The only way he got on to the transplant list in the end was because we went to court – and I don’t think that should have been necessary. 

I was over the moon when the clinicians agreed, during the court proceedings, that the risks of 14 days of sedation and ventilation, although not without risk, would not outweigh the benefits of having the kidney transplant. 

Then I thought it would be difficult to find a donor but the call came through about five months later that there was a deceased donor. I was in complete shock and dropped the phone. I kept pinching myself. My boy has a chance at last – this was all we’d ever hoped for. My anxiety was running high but my heart was exploding with sheer relief. 

William had his kidney transplant in August 2022. It all happened really quickly once the donor was found, which in my opinion was better for William. When we went into hospital for the transplant he just thought he was having a dialysis session – but he was sedated and taken to theatre.  His time in intensive care was hard both emotionally and mentally for both William and for me. William’s kidney took a long time to work, meaning he required further dialysis to remove fluid. I just kept praying, and I kept reading to him and talking to him. It helped me to help him in a strange way.  William coped very well with both recovery from the transplant itself and the sedation and ventilation. 

When William was extubated, a team was on standby to restrain him as the doctors expressed concern that he would pull lines out and act aggressively. However, William did not touch anything and did not attempt to do so.

After being weaned off sedation, there were only a couple of incidents where William hallucinated and thought that someone was pulling the central line in his neck. As this line was not being used, I requested that it be removed to minimise the risk of him pulling it and making him more anxious. 

When in ITU, William contracted sepsis and E.coli, and had urine infections constantly until December 2022. However, his blood tests from January, February and March 2023 show that he is improving all the time. Recovery is a work in progress, and we still do struggle to encourage William to drink 3 litres of fluids and urinate. The doctors were concerned that William’s stay in ITU could have an impact on his mental health and general wellbeing following the surgery. However, none of the psychological risks have occurred. William does not appear to remember being in ITU or having a transplant. William is back to his old self and is able to enjoy his life again, playing golf, snooker and just being back at home.

When he was poorly after the transplant, the doctors were saying “we said this would happen” and “don’t get your hopes up” – but he pulled through,  like I always knew he would.  If I’d listened to them and not taken the case to court, William would have been sent home in September last year, and had palliative care, and he would be dead now.

Parents know their children best and medical professionals need to listen more to parents, and learn more about children and adults with additional needs –  because in my experience there is a lot of ignorance among health care professionals about people with learning disabilities and autism.

If I were presented with this situation again, I would most definitely do it all again in a heartbeat. William’s situation demonstrated to me that although there are risks to being placed in intensive care, it was absolutely the right decision for William.  

Finally I want to say to parents of other children with autism and learning disabilities that it’s worth going to court when you don’t agree with what doctors are saying is in your child’s best interests.  Judges can be fair and you can get the right outcome.

Ami McLennan is William Verden’s mother. 

Note: With thanks to Ami McLennan for the photograph of her son.

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