By Sam Green, Daniel Clark, Claire Martin and Imogen Goold, 10th February 2022
Editorial introduction by Celia Kitzinger
Four commentators give their impressions of a case in the Court of Protection before Mr Justice Hayden (Case No.1354439T Re PH).
We’ve already published a blog post about the most recent hearing (“A home not a hospital”) and about several earlier hearings in this case.
It came back to court in 2022 (after a long history of previous hearings) on an urgent basis, because PH, who has an acquired brain injury, was refusing to allow himself to be fed via his feeding tube. He said he’d “had enough”, having lived in hospital – despite being ready for discharge – since 2019. He was desperate to live somewhere that felt like a home and to have some privacy.
The Health Board had applied for a declaration either that PH had capacity to decide for himself whether or not to accept tube feeding, so his decision should be accepted even if it led to his death; or alternatively that he lacked capacity to make this decision but that it was not in his best interests to force-feed him contrary to his wishes since this is both medically counter-indicated and also “demeaning and traumatic” for PH.
Towards the end of the hearing on 7th February 2022, the Health Board withdrew that application. It was no longer necessary because PH had decided to resume his feeds, and had done so since being taken to see the new home to which he will move towards the end of February.
So, PH has a hopeful future.
Reports of the case (in earlier blogs – in reverse date order: “A ‘secret’ hearing on life-sustaining treatment”; “Capacity to refuse intensive care”, “When academic theory becomes reality”, “Delays in finding an acquired brain injury placement”, and “Inviting family into the decision-making process” had caused considerable interest. It was very unfortunate that the hearing on 2nd February 2022 had not appeared in any court listings (hence the term ‘secret’ in the title) and I managed to attend only because I was coincidently in Newcastle (for a different hearing) and able to make it to the courtroom on time.
The hearing of 7th February 2022 did appear in the listings and although seven (I think) observers managed to attend, there were problems for others who did not (at least four, to my knowledge). The hearing was originally listed for 10.30am and appeared from the listings to be attended (i.e. not marked as “hybrid” or “MS Teams”) such that observers would only be able to attend if they went to the physical courtroom. In fact, I’d heard (unofficially) that it might actually be hybrid and I told potential observers about this. We then heard that the hearing would be delayed until 12.30pm, and then, at about 11.30am, one of us received an email from court staff saying it was being moved earlier again, maybe as soon as 11.45, though in fact it started at 12noon. The effect of shunting the hearing from 10.30am to 12.30pm then back to 12noon that some of those who’d hoped to observe in the morning but had afternoon appointments found they were unable to observe; but others, who hadn’t been able to observe in the morning, were excited at the possibility of observing the hearing once we knew it had been rescheduled for the afternoon. Unfortunately, though, late emails to the RCJ staff (who ask for requests to observe to be with them by 9.30am on the day of the hearing if possible) did not yield responses – and I didn’t learn this from some people until it was too late. The video administrator and Mr Justice Hayden’s clerk did everything they could to help with the situation (thank you!), and I was pleased that so many observers did gain admission, although obviously disappointed for those who did not receive the link to the hearing on time. As is sadly often the case, the court’s aspirations for transparency flounder in practice, despite everyone’s best intentions.
Four reflections on the case in the #NotSecretCourt follow. The first is by Sam Green, a barrister who did not observe the hearings but chose to comment on a blog post about the hearing of 2nd February 2022, and we reproduce his commentary here. The second is by Daniel Clark (a paid carer); the third by consultant clinical psychologist Claire Martin; and the fourth by legal academic Imogen Goold. These latter three commentators all observed the hearing on 7th February 2022.
1. Competing aims, by Sam Green
Overall, there is a sense of competing aims among the legal professionals involved in this hearing.
The lawyers are seeking decisions from the judge.
The judge, perhaps recognising that no decision he can make is likely to affect the outcome for PH, is attempting to use his authority to mediate the best outcome for him.
It is an excellent example of how the CoP can work best and how it differs from traditional courts.
It is also a reason it is a worry that CoP decisions become precedents despite the repeated assertion that every case rests on its facts.
This case follows a string of cases which have at their heart a similar theme: faced with a situation P cannot control, they react by refusing nutrition. Judicially these cases boil down to whether they are simply refusing nutrition because they’ve had enough or because they want to force another to act differently. The former is generally capacitous the latter generally not.
Above all, the theme of these cases is agency – people who feel agency has been robbed from them asserting it in the most extreme way possible. In this case “He feels he has been a creature of the state” and he is “understandably…flexing his muscles”
Hayden J encourages them to recognise that they do have agency and to help them exercise it.
I made a video about another case heard by Hayden J in a similar legal situation which can be viewed here.
I said before a ruling couldn’t affect the outcome for PH. What I meant was that if the judge held PH had capacity, then he can refuse nutrition. If the judge held that he did not have capacity it was accepted that there would be no attempt to force nutrition on PH so, practically. what difference would it make.
Instead, Hayden J chose to use the time more effectively, narrowing differences, cajoling, encouraging, arranging practical progress.
My favourite bit in the report from the 2nd February 2022 hearing is this:
Judge: Has the plan been put before PH?
(c. 20 second silence)
Hillman: Your Lordship is asking me why not?
Judge: No. I’m letting the question float through the ether. Why is it that everyone knows the plan except the person it most affects?
Sam Green is a barrister and mediator at Normanton Chambers.
2. Respecting the thoughts and feelings of P, by Daniel Clark
Although I had not observed any of the former hearings in this case (this was only the second time I have observed a Court of Protection hearing) I was reasonably familiar with the situation before the hearing began. I had read previous blogs about this case which, in chronological order, can be found: here, here, here, and here. Given the content of the previous hearings, I am so glad that I had the opportunity to observe a hearing with such a positive tone.
Celia Kitzinger had contacted me with the details of this hearing around 11am, which had been listed for 10.30am, but which she’d heard was actually starting at 12.30pm. I’d not received any response by 11:35, so Celia forwarded my email to a named member of the court staff she thought might be able to help – and also told me that she’d heard more recently that it was due to start earlier. This led to a mild panic on my part as I rushed around ensuring that I had everything I needed whilst waiting for the link to arrive. Thankfully, I was ready on time, and the hearing started at midday.
In contrast to the first hearing I observed, which was exclusively online, this hearing was hybrid. Mr Justice Hayden, Counsel for the Health Board (Roger Hillman), and Counsel for the Official Solicitor (Victoria Butler-Cole) were all present in the courtroom. Joining the hearing remotely were PH and a psychiatric nurse. There may have been other parties who I missed, as I was unclear who everyone who was joining the hearing remotely was. In the hearing that was exclusively virtual, parties to the case had their role in the case posted next to their name. That did not happen in this case.
Being a hearing that did still rely on technology, I did naturally have a technological difficulty of my own. I struggled to hear the initial exchanges, as the audio was fairly faint. This did, however, resolve seemingly of its own accord, and I was able to both see and hear the hearing clearly.
Background to the case
PH is a man in his 40s who, in 2016, drank highly corrosive hydrogen peroxide, resulting in oesophagectomy (removal of part of his oesophagus), splenectomy (remove of his spleen), a tracheostomy and colostomy, and the insertion of a PEJ through which he receives nutrition and hydration. Following a seizure in 2019, PH was diagnosed as having an acquired brain injury. He has been assessed as lacking the capacity to make decisions about his care and residence.
In the last hearing, on 2nd February 2022, PH had been refusing nutrition (not hydration). An interim placement had been found for him but he wanted the opportunity to visit it himself to see whether he liked it. Hayden J made an order that PH should be taken to see the house.
Bringing PH to the centre
The hearing began with Counsel for the Health Board (Roger Hillman) being asked to describe what had happened so far with regards to acquiring a place for PH to live, in order to help observers to understand the case. I was grateful for this, and it showed to me that the Court of Protection is serious about its commitment to open and transparent justice.
Whilst listening to the summary, it struck me, once again, that it is a truly intolerable situation for somebody to be living on a surgical ward for a year-and-a-half despite being medically fit for discharge. This was brought home to me by Hayden J’s observation that “we’re giving this man the first opportunity for privacy in a year-and-a-half“. I cannot imagine how this total lack of privacy for so long would have felt.
Despite all the previous setbacks, somewhere has been found that will allow PH to have his wishes met. This even extended to ensuring that there was somewhere else for his care staff to stay, which was still in the house but also allowed PH his own space. They could be “out of his hair“, as Counsel for the Health Board remarked.
It was reported that upon visiting the house that it was proposed he would temporarily move to, PH began once again to accept nutrition via his PEJ tube, having chosen not to for 10 days prior. He was actually going to have a feed prior to the visit but decided not to, due to the risk of his stoma leaking on the journey. This was a clear indicator that PH was happy with this new house, and he has continued with his feeding regime since.
What really struck me about this hearing was the fact that PH’s thoughts and feelings were brought to the fore. There were repeated references to the fact that this would only be an interim placement because PH wanted to be close to home, to his family and friends. In doing so, something important to PH was recognised, and that guided decision making. This placed him front and centre, and acted as a reminder of the importance of an individual’s own views when best interest decisions are formulated.
Community access was also clearly important to PH. Hayden J remarked that moving to this house would allow him to get a new hairstyle that he wants, which I thought was a good reminder of the small pleasures that have been denied to PH but that so many of us take for granted. I also reflected at the time that this demonstrates how well Hayden J has come to know PH, beyond his support needs and the importance of being close to home.
My first care job was in neurological rehabilitation, supporting people to work towards their eventual discharge. When thinking about the next step, it is quite easy to focus solely on where can meet somebody’s needs, and how close they would be to their family (if they want to be). It is, however, so important to see beyond those issues – as important as they are.
I distinctly remember one individual, an avid cook, who told us how important it was that she could be close to her favourite supermarket. This way, she could go out and get her favourite foods with ease. Ordering online, she told us, just isn’t the same – you never know what you’ll miss, what new tastes will pass you by. By chance, I was actually in that chain of supermarket a few days after she told me this, and I remember thinking at the time how these simple acts become so much more important when you can’t do them. As a young and inexperienced carer, this experience made a significant impact on me.
Overall, I found observing this hearing to be very moving, as PH’s next steps were decided upon in a way that included him. His thoughts and feelings had been brought to the fore, and he was recognised as the expert in his own life.
Towards the end of the hearing, PH gave Hayden J a thumbs up to signal that he was happy with the direction of travel. After the challenges of the last few years, I feel extremely relieved for him.
Daniel Clark is a paid carer. He is also deputy director of Backbench, an unaffliliated open platform blog that publishes a range of articles about current affairs. He has recently completed an MA in Political Theory. He tweets @DanielClark132
3. A hopeful resolution, by Claire Martin
I haven’t observed any of the other hearings for PH. I have read the blogs about his case and the media reports of Hayden J ‘slamming’ the Health Board for their lack of adequate care. I managed to get the link for this hearing after being unable to observe a different hearing today and I was really pleased to be able to join at what was a very hopeful resolution for PH.
PH was on screen throughout this short hearing and he looked to me to be relieved about the current situation – which is that a suitable place to live (off the hospital ward) has been found for him as an interim measure, whilst the search for a permanent home continues.
For 10 days (until 4th February) PH had been refusing nutrition: it seemed he had lost hope. Counsel for the Health Board mentioned that PH had a history of refusing nutrition and Hayden J corrected this in relation to the current situation:
“… denial of feeding had been the history of this case – but this time the motivation was different – he’d run out of steam, lost a will …” [Judge’s emphasis]
I notice in a previous blog about this same case, by Gaby Parker, that P had been given a diagnosis of ‘emotionally unstable personality disorder – impulsive type’, exacerbated by his brain injury. There is always a high risk for people (given this label) that all of their actions and takes on their experiences are put down to such a diagnosis (known as diagnostic overshadowing) so I was very pleased to hear Hayden J say (in relation to Health Board efforts to find a place for him to live) that he didn’t “doubt the energy or sincerity of the effort [to find somewhere suitable] but nevertheless it was not entirely suitable for P and his resistance to it was not entirely unreasonable”.
As Gaby Parker had reflected in her previous blog:
“I wondered whether P’s complex psychological needs (which included emotional and cognitive issues as well as self-harming behaviours) had led to an over-shadowing of his ‘normal’ distress in the face of unwelcome healthcare interventions and his right to have an opinion about these. There was a sense that he had been silenced in his care, both literally and metaphorically; I felt distressed reflecting on the many ways that being silenced in this way would be experienced by any person who had been through significant trauma. It was apparent that P’s opinion had not been weighted highly in decisions made about him …. .”
What struck me the most about Hayden J’s interaction with PH (and I have noticed this before when observing the Vice President’s hearings) is that he treats ‘P’ in each case as an individual and not a diagnosis.
The judge does not seem to seek to attribute P’s views and behaviours solely to any diagnosis, especially psychiatric/psychological diagnosis. He ensures that the relational interplay between the health and social care organisations and each P is noted. This means that ‘behaviour’ is not located in P (or conversely only in the clinicians/teams/organisations) but in the relationship between them. Given the location of power in a patient-to-system dyad, I think this is vital in CoP cases. It conveys to each person at the centre of a case that they matter as a person in the CoP.
I wish PH all the very best for the next part of his life and hope that the system continues to listen to him, as Hayden J has managed to listen to him throughout his lengthy court case.
Claire Martin is a Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core group of the Open Justice Court of Protection Project and has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin
4. A constructive approach, by Imogen Goold
This was my first experience of watching a COP hearing, and I was struck by the collaborative, constructive approach taken by all concerned. There was clearly a genuine commitment on the part of everyone involved to ensure Mr PH’s wishes were understood and respected, and that he was found accommodation that was not merely sufficient, but a home where he would feel happy and comfortable.
I was also struck by the thoughtfulness with which Mr Justice Hayden approached PH’s motivations for refusing feeding.
When Mr Hillman suggested that Mr PH was using refusals to exert some control over his situation, I was impressed by the fact that His Honour gently, but firmly, pointed out that while that was his motivation for past refusals, the current one was of a different character. As he said, PH wasn’t trying to manipulate his situation or press for his wishes to be met, but this time instead he had ‘run out of steam’ and lost his will. This was an important insight, because it drew attention to the fact that this refusal evidenced something different – his loss of hope, which was perfectly understandable given the parlous situation in which he found him. It was important because it meant the focus was on whether, if PH’s wishes were fulfilled, he might turn a corner.
And, in fact, it turned out to be the case. Once suitable housing had been found, he had agreed to feeding, and he was clearly feeling more positive about his future. This, of all that I saw, really impressed upon me how the constructive approach and the attention paid to his wishes, despite his lack of capacity to make his own decisions, led to an outcome with which the Official Solicitor understandably said she was ‘delighted’ to agree.
Imogen Goold is Professor of Medical Law at the University of Oxford. She tweets @ImogenGoold