By Daniel Clark, 8 October 2023
This case (COP 14013508) concerns Isaac, a young man with a diagnosis of learning disability and “Autistic Spectrum Disorder”. Isaac enjoys people watching, as well as looking at street scenes on his iPad. He does not like hospitals or medical interventions. He also has end-stage kidney failure.
At a hearing in April 2023, Mr Justice Hayden was asked to rule on Isaac’s best interests to receive haemodialysis, a transplant, or palliative care. At that time, desensitisation work was being carried out with the view that (eventually) haemodialysis would be possible, and after careful probing of the witnesses, Hayden J gave an ex tempore judgement that it was in Isaac’s best interests to proceed with the desensitisation work and be placed on the waiting list for transplantation, in the hope he will eventually be able to tolerate haemodialysis. There have been two previous blog posts about this case: Ruby Reed-Berendt and Bonnie Venter wrote in detail about the evidence at that previous hearing (The most complex of best interests: Organ donation, learning disability, and the options on the table), and I wrote about the way in which Hayden J ensured that Isaac did not ‘go missing’ amidst the medical technicalities of the witness evidence ( “A lively personality” in a complex medical case). Six months later, at this hearing on Friday 6th October 20023, I was keen to discover what had unfolded since then.
Thanks to one of the lawyers in the case, we learnt that the advertised time for the start of this hearing, given as 10.30am in the official Royal Courts of Justice listings, was wrong: it was actually planned to start the hearing at 10.00am. That was helpful to know and meant I did not miss any of the hearing, which I observed remotely. And I didn’t receive a Transparency Order, but do have one from the last time I observed this case.
It was a hybrid hearing. In the courtroom was Mr Justice Hayden and Katie Gollop KC, of Serjeants’ Inn Chambers, representing the Applicant Trust. Joining on the Teams video link were: Parishil Patel KC, of 39 Essex Chambers, representing Isaac via his litigation friend, the Official Solicitor; Victoria Butler-Cole KC, also of 39 Essex Chambers, representing Isaac’s parents (who had previously represented themselves); Bridget Dolan KC, of Serjeants’ Inn Chambers, representing the ICB; and Isaac’s mother and father, sharing a camera as they did in the hearing in April.
The hearing
Unfortunately, the sound was not ideal at the start of this hearing, and I struggled to hear those in the courtroom. However, I could hear enough to be able to follow the substance of the submissions by Counsel for the Trust.
Counsel stated that “the programme of desensitisation has been embarked upon and most recently that has involved taking [Isaac] to [a unit] and putting a tube next to his skin, getting the dialysis machine, getting him used to the room and the noise“. Although “he has done better than many thought he would”, the multi-disciplinary team (including people from the Community Learning Disability Team) “consider that there are real problems with him doing haemodialysis whilst conscious because there have been some instances which, if they occurred whilst there was a live session, would have put him and possibly other staff at risk”. I could not hear quite clearly what had happened but it sounded as though Isaac had been, at times, standing up and moving around. I also heard the word “agitation” but not the surrounding context. What I did hear clearly was that “there was a time when he was in considerable distress”.
If haemodialysis were to proceed, the hospital could begin it as early as next Thursday or Friday, which “would be in time to avoid hospitalisation”. To start it in the last week of October, which it sounded like was when a next hearing on this matter was originally scheduled for, would most probably be too late.
On this basis, Hayden J seemed inclined to make a decision as to whether haemodialysis was in Isaac’s best interests during this hearing. He explained he was “instinctively drawn to giving it a try but that’s an entirely human reaction…I have to hear what the challenges are likely to be.” He therefore rose to allow the barristers time to decide how he should hear the evidence.
I stayed on the platform during the brief break, whilst the barristers had these discussions. It’s fair to say that it was unanimously agreed that there was not time to consider the evidence; the situation needed a full day hearing, which could not happen then (the judge had already delayed another hearing by an hour). Further, there was an expert witness who Counsel agreed needed to give evidence. However, he was unavailable until the following week. Finally, the doctor clarified that his view was that a decision would need to be made next week but, he thought, haemodialysis could start the week following.
When the judge returned, Counsel for the Trust explained that the parties were in agreement that the hearing should take place the following week, and that they would be happy (if necessary) for it be heard before another judge. Initially, the judge did not seem too inclined to follow this course of action, and he briefly heard evidence from the doctor. It was only then that the position of the Trust became clear – although it’s possible that Counsel had already laid this out and I had just been unable to hear it.
The doctor explained that Isaac’s blood tests showed he is becoming progressively more ill as a result of his kidney failure. Blood tests show his GFR (Glomerular Filtration Rate) which shows how well the kidneys are filtering waste) had been declining since April, and his potassium is now rising for the first time, which has the potential to cause death. Generally speaking, the doctor explained, this is when a patient would be invited to start haemodialysis. However, “the position of the Trust is that we would not want to start [Isaac] on haemodialysis because we don’t think it’s in his best interests to do so… If we had to start haemodialysis, we can only do it by proactively sedating him three times a week and we don’t think that’s in his best interests”. It could be the case he had to be sedated three times a week for “months, even years potentially”.
Even trialling haemodialysis was something they did not see as in his best interests because they would be proactively sedating him three times a week. It is possible that even after a transplant, Isaac would require dialysis in the immediate aftermath to encourage the kidney to work. The doctor felt there was a need to hear from the hospital where the transplant would take place so as to ascertain their views on this. He also identified that, whilst sedation has been used to facilitate haemodialysis for another person in another hospital, the circumstances were not identical. For Isaac, the levels of sedation would be heavier. The doctor stated it would be best to hear from the expert (who the barristers had mentioned earlier) to ascertain the difference in the two cases.
Moving forward
Hayden J re-scheduled the hearing for the following week. Given the fact that there had been some technical difficulties, he decided all Counsel and witnesses (where possible) should be physically in the courtroom. However, there will be a video link for Isaac’s parents (unless they wish to attend in-person) and for public observers. The judge actually said that “members of the public are entitled to join by video conferencing platform”, which I thought was a clear and explicit commitment to open justice.
It is worth pointing out that it was only by chance that the judge could re-schedule the hearing at such short notice: another case he was due to hear had just applied to vacate as they have an agreed order. The judge had also briefly explained problems with finding available judges. I couldn’t hear the exact detail but it seemed indicative of the pressure the judicial system is under (issues I wrote about in another blog post: A court system creaking under its own weight: Transparency challenges). I should also point out that the judge was very clear that the time and diary pressures of the court should not be central to decision making: it is the best interests of Isaac that are of importance.
This case will return to court on Tuesday 10th October 2023, and will be heard over the duration of a day by Mr Justice Hayden.
Daniel Clark is a member of the core team of the Open Justice Court of Protection Project. He is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research considers Iris Marion Young’s claim that older people are an oppressed social group. It is funded by WRoCAH. He tweets @DanielClark132.
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