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
Promoting Open Justice in the Court of Protection 