Best interests, hospital transfer and a feeding tube: How open justice fails without access to court documents

By Amy Dadarria and Celia Kitzinger, 30 November 2023

Editorial Note: Amy (a law student) and Celia (a non-legal public observer) both observed this hearing but only Celia was sent the parties’ position statements – and there was no opening summary.  Amy’s blog contribution (below) was written on the basis of what she observed in court alone, and shows how opaque “open justice” can be to observers denied access to background information and court documentation.  Open justice means much more than just letting  observers into the courtroom. It should include an introductory summary and, ideally, position statements which are relied upon as ‘shared information’ by everyone in the court. Compare Amy’s and Celia’s posts below to see what a difference access to court documents can make. As Amy comments in her postscript, “This really illustrates the problems of so-called ‘open justice’ without access to court documentation”.

Transferring P from one hospital to another: Amy Dadarria

My engagement with the Court of Protection started with personal experience. Throughout the ten years I supported a family member who became a “P”, my perception of the COP changed from an adversarial view to one of admiration and respect for way in which extremely sensitive matters are decided on behalf of vulnerable adults who lack mental capacity to make decisions in their own best interests.  As a result,  following the death of P, I decided to make a career change and pursue a legal career in the Court of Protection field to assist lay people like me to navigate the – sometimes bewildering – underlying law, principles and practices of the Court and affiliated government bodies. I completed a postgraduate Graduate Diploma in Law course and will be starting the Legal Practice Course in January 2024. 

I’ve observed 13 hearings in the COP – and tried but failed to observe 6 others.  It’s not always straightforward.  

Earlier in the weeek, I had tried to observe a case in Nottingham County court, where there was a fair amount of detail provided as to what the case  was about.  However, I was informed by the court staff on the morning of the listed hearing that the hearing had been vacated.  This is not an uncommon experience, but it means that I am unlikely to be able to  choose another hearing to observe on the same day due to the requirement of submitting observation requests in advance.  

I’ve generally found hearings at First Avenue House and at the Royal Courts of Justice to be much easier to get access to, so when I saw a hearing (COP 14173602) on 24^th November 2023 listed in the RCJ (remotely) before Keehan J, I sent in my request to observe it.  I emailed the RCJ on the evening of the day before. At 9:50am on the morning of the hearing, I received the Teams link for a 10am start and had no problem accessing the hearing. 

The Observer wiki page on the Open Justice Court of Protection Project website explains that before the hearing is opened, a public observer may be asked by court staff to turn their microphone and camera on to confirm their name and that they can hear and see the court, after which the microphone and video must be turned off to be effectively invisible for the remainder the hearing. That’s actually what’s happened for every hearing I have managed to access, except for this one.  In one case (only), I was even subject to a rather uncomfortable extended inquiry as to the particular reasons for my interest in the case in question and the parties were asked whether they had any objection to my presence (they didn’t fortunately).  

In this case, though, there was no acknowledgement at all of my presence in the hearing, despite the fact that that the barrister who opened the case noted the presence of two other public observers  (Celia Kitzinger and another law student): he mentioned their names to the court and asked the judge if there were any objections to sending them Position Statement (as both, I think, had requested). 

Perhaps in this case, my attendance was simply overlooked.

Despite the presence of three observers – two of whom were definitely known to the court – this hearing was not a great example of open justice.  There was no case summary presented as recommended by Mr Justice Hayden, formerly Vice-President of the Court of Protection, which meant I wasn’t sure of the facts of this case. And although I emailed both counsel representing P (Jack Anderson) and counsel for the Health Board (Adam Fullwood) requesting their Position Statements,  I received no reply from either.

Without any documentation pertaining to the case, I can only submit my general observations of what I understood to be the matter before the court. 

I gathered the case was about an elderly gentleman currently being cared for at a hospital which is far from the family who wish to be near him as he is, in the words of the judge “reaching the end of his days”.  

At no point did I ascertain that any of the parties present objected to the family’s request to move him  – or at least, not in principle, although there remained outstanding issues of incomplete protocol concerning the transfer authorisation, lack of documentation from the current treating team confirming that such a transfer would not harm P, and issues concerning the strained relationship between the current treating team and the family.

The judge commented that he felt it inappropriate to “pre-judge” the relationship between the family and the treating team. Personally, I thought this commendable since I thought what really mattered was how to overcome the other issues of the lack of compliance with protocol and obtaining documentation authorising the transfer which included agreement from both the current and proposed treating teams.     

The case was adjourned until the following week, to be held as soon as possible given the tenuous health of the gentleman at the centre of the case. I expect that, by then, the parties will be in better position to allow the judge to make a decision.

Clinically assisted nutrition and hydration: Celia Kitzinger

There was no description of P and no mention of the impairment in the functioning of his mind or brain underpinning the lack of capacity he must have been found to have in relation to decision-making about where he lives (or anything else).  It’s really unsatisfactory for observers (and dehumanising for P) for us to be told so little about the person at the centre of the case.  It also creates the unfortunate impression that the court might not be considering P’s position as an individual, from a person-centered perspective.

Since I have (as Amy does not) benefit of the Position Statements (sent by both counsel) I know that P is a retired doctor, now in his 80s, whose impressive and very senior medical career began in Iraq.  He now has dementia, and a few months ago he was admitted to hospital following a fall.  At his current hospital he was recorded as also suffering from delirium.

The issue discussed in court was, as Amy says, almost exclusively the question of whether or not P could be transferred to another hospital.  

Counsel for the Trust said at the beginning of the hearing that the option of transfer to another hospital “hasn’t been offered” and “isn’t an option before the court”.  

But it became clear that the daughter thought differently – and this was known to the lawyers, presumably from pre-hearing discussions and/or from the daughter’s position statement (which I haven’t seen).  She’s a doctor herself, and second respondent in this case (the Health Board is the applicant and P – via his litigation friend –  is the first respondent).  She is unrepresented (i.e. a litigant in person, without a legal team).  “[P’s daughter] says it’s possible and has contacts there”, said Adam Fullwood, “but the Health Board I represent is not aware it’s an option that’s available”.  

This sounded contentious to me – but it also meant that the issue of hospital transfer could not be the basis of the Health Board’s application to court.  You don’t apply to court to move someone to another hospital if you don’t even think that’s an available option.  At this point I fervently wished that the judge had asked for an introductory summary to the hearing – not least because he knew there were (at least) two observers.

The judge asked P’s daughter to explain her view that transfer was an option. It turned out she’d got a WhatsApp message saying that a consultant at the hospital she wants her father moved to was “able and willing to manage his ongoing care”. She’d approached this second hospital she said because of the “complete breakdown in trust and relations” at the current hospital – and also, she said, because of its location, much closer to her brothers and to a close family friend (also in court) considered by her father to be “a second daughter”.

After some discussion about how to get formal confirmation of, and details about, the proposal to move P to the second hospital – it turned out the consultant who’d sent the WhatsApp was on leave for a week – the judge decided to adjourn for 30 minutes to allow this to be explored between the parties.  

When the hearing resumed, Adam Fullwood expressed the view of the Trust and it became clear that correct protocol had not been followed – and that as a doctor herself, P’s daughter had been able (as most of us would not) to shortcut the formal procedures – something the Health Board seemed not too happy about.

“What would normally happen is that the current consultant with the patient under their care would request transfer and send a letter to the potential receiving team, with a summary of the case and the relevant notes. The receiving team then considers all the information before deciding whether or not to accept. If the patient is accepted, they are placed on the ‘repatriation’ list.  In this case the process has been subverted.  There have been meetings with doctors without the medical notes or the medical team being involved. It turns out that actually P was accepted by them on 30^th October, but as far as we’re aware he’s not on the repatriation list and we don’t know anything about that.  We are now making enquiries and the process I’ve outlined will then begin.  But we would like to repeat our concerns about whether it’s appropriate to transfer him.  P has become familiar with the current treating team, including the nursing staff.  Mr X, P’s litigation friend, says he has a close relationship with the nurses, including the ward manager: they hold hands and he appears to derive comfort from that.  And there is the issue of the journey and how that might impact on him.  At present the court doesn’t know whether that is an available option and we understand why the court is encouraging exploration of it, but it’s important to make additional submissions”. 

The judge made his views on the matter clear.

“I don’t at this stage think it’s appropriate for me to make any comments on the relations between treating clinicians and the family of P, or make any observations that suggest I’ve predetermined or prejudged the issues.  But with those caveats, I’m sure that if P is reaching the end of his days, he would want to do so surrounded by those he loves, and those who love him, and if transfer to [the new hospital] would facilitate that… then however comfortable he is where he is now, I’m sure that would be his wish.  […]  In those circumstances I would wish to have explored more fully the prospects of his being transferred to [the new hospital] before making a final determination on these issues.  I well understand and appreciate that the Health Board has various protocols and procedures but we are talking about an elderly gentleman ending his life and would hope that all stops were pulled out to ensure he was able to transfer.”

Counsel on behalf of P drew attention to “the risks of transfer as well as the potential benefits”, to which the judge replied “I have little doubt that’s right, but I think I have probably conveyed my provisional view”.

P’s daughter thanked the judge for “exploring this opportunity” saying that a transfer “will give us all the opportunity to spend these days with our father”.  She spoke in a composed, but assertive manner: “In spite of the fact he’s lost 17.9 lbs since losing his NJ tube, he’s still in good spirits, asking about every member of the family, and he’s very sad when we are asked to leave.  He is looking at death within a few days at the current hospital.  At [the new hospital], he may have a chance of a longer life.”

The judge replied: “I completely understand all of that. In wishing to have enquiries made about a transfer, I’m not giving any indication of what plan I would endorse in due course. I understand your concern to be surrounded by people he loves at this critical stage in his life”.

Finally, P’s wife (appearing on screen with his daughter) was asked if there was anything she wanted to say: “My husband without the NJ tube is starving and will be starved to death.  He’s not eating – or hardly eating at all.  Any chance that we save his life, we should be very grateful, Your Honour”.  

The hearing was to be delayed until “next week” and it’s provisionally listed for a full day hearing.

The Position Statements

Bubbling just under the surface of this hearing – and absolutely fundamental to the case as a whole – is the question of whether or not P should receive clinically assisted nutrition and hydration. 

This is made clear in the Position Statements, which I received and Amy did not.

He’s a physically very frail 85-year-old man with severe cognitive impairment due to moderate to severe dementia and chronic and severe delirium.  

He can swallow a normal diet but adamantly refuses to do so (on the whole).   

When P was first admitted to hospital in July 2023, he was receiving nutrition and hydration through an NJ tube.  The documentation says that he “presented with regular episodes of agitation and aggression towards nursing staff”. In order to stop him pulling out his tube, “1:1 supervision was required and mittens had to be placed over his hands”. 

Since mid-October, clinically assisted nutrition and hydration has no longer been given.

Cessation of clinically assisted nutrition and hydration is contrary to the wishes of P’s daughter.  But it seems to be what P himself wants – at least according to the Position Statements I’ve seen.  

Although P has been assessed as lacking capacity to make decisions about his medical treatment, nursing notes record that he has strong views. When asked a few weeks ago if he wants a feeding tube, he said “No, I don’t want it”.  When asked what he would like to happen, he said, “I want to die”. Since removal of the NJ tube, he has accepted limited amounts of food and drink and “best results are usually achieved if P is allowed to choose to eat in his own time with minimal interference.  Attempts to press him to eat result in him getting upset”.   When asked if he would like to eat when he felt like it, he said “exactly”.

Family members have asked for CANH support to allow further time for P to take and respond to anti-depressant medication: he’s now had 4 weeks of treatment which has apparently made no difference. 

The Trust view is that, although there is no direct evidence as to what P would have wanted in the situation he now finds himself in, there is evidence that P is someone who has always enjoyed freedom and control over his life, and wishes to continue to do so. He’s regularly resistant to interventions and is reported to be calmer, less agitated and happier without the NJ tube. Being given more control over his day-to-day life seems to have a positive effect on his mood.  The Trust says that “requiring P to undergo forced eating with restraint and supervision is the antithesis of freedom, self-determination and autonomy and represents an affront to his personal dignity in the last weeks of his life”.  Their view is that enforced feeding would be contrary to P’s best interests and cause him unnecessary distress. They believe he should receive basic care and be offered food and water to take or not as he chooses. Counsel for P supports that view.

The family (at least those whose views are known) are of the view that clinically assisted nutrition and hydration should be restarted.  This was made particularly clear, in the course of the hearing, by P’s wife, with her closing statement that P is being “starved to death” by the hospital decision not to reinsert the feeding tube.

Visits from his daughter and a family friend have been limited to 2 hours a day “due to safeguarding risks around interfering with care and treatment”. This has included “feeding contrary to instructions which has caused P to choke and otherwise represents a risk to his health and life”.

It’s clear from the position statements that the lawyers expected the hearing to be about the feeding tube.  The position statement for P refers to “the hearing on 24 November 2023 to determine whether it is in his best interests to be provided with clinically assisted nutrition and hydration (CANH) by naso-jejunal tube” (§1).  The position statement from the applicant Health Board says: “this is a final hearing listed to determine whether it is in [P’s] best interest to receive (1) enforced clinically assisted nutrition and hydration (CANH) via a NJ tube along with the required restraints and other measures or (b) to continue with the current regime of allowing P to eat and drink when he wishes with basic supportive care being provided  as required to maintain his comfort”. 

So, I think both barristers must have felt somewhat ambushed by what actually happened –  which was an exclusive focus on whether or not P should be transferred to another hospital (an issue mentioned by the Health Board in their Position Statement as “a supplementary issue” to the main business of the hearing). I can only assume that the daughter believes that transfer to a new hospital will mean reinsertion of the NJ tube.

The disjuncture between the issues addressed in the Position Statement (feeding) and the issues addressed in the hearing (transfer) was presumably unexpected for all parties.  

For an observer without copies of the position statements (and in the absence of an opening summary), this created a misleading impression of the key issues of the case.  

Amy would never have known what was at stake for this family without the information I subsequently conveyed to her via this blog post.  

This isn’t open justice.

Postscript from Amy

Reading Celia’s contribution was revelatory.  I did understand that the Health Board was less than pleased about daughter’s behaviour (who they seemed to imply should have known better, being a medical practitioner herself). But I had no idea there was more to their objections than being cut out of the loop. There are in fact serious medical issues to be addressed. I totally missed the underlying disagreement about clinically assisted nutrition and hydration between the family and the treating team.  What I got was that the daughter had not followed protocol and did not properly engage with the current treating team. Although I detected criticism from the Health Board’s counsel about this circumnavigation of proper procedure, I believed that this was a technicality and that adjournment would enable this misstep to be corrected. I didn’t understand that there was any real resistance to the proposed move, or the disagreement about clinically assisted nutrition and hydration that might underwrite that.   This really illustrates the problems of so-called ‘open justice’ without access to court documentation.

Amy Dadarria was inspired to pursue a legal career in Court of Protection following ten years full time pro bono work as a support worker, citizens’ advocate and litigant in person for a profoundly disabled family member lacking mental capacity to make various decisions. She completed  the PGDL in 2022 and is starting the Legal Practice Course in January 2024. She is on LinkedIn here linkedin.com/in/amydadarria

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 490 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia