The value of observing a case management hearing in the Court of Protection

By Helen Moizer, 7th April 2022

The value of observing a case management hearing in the Court of Protection.

When I observed a Court of Protection hearing for the first time, I did not know what I was entering into or what to expect. Despite it being a video hearing link, I still felt apprehensive and as though I was about to intrude on a group of people and disturb their discussions. On reflection, this is precisely why the Open Justice Court of Protection Project was set up. 

My first attempt to see a hearing failed as the hearing was cancelled. On that occasion, I’d followed the Open Justice Court of Protection Project’s guidance and asked the court for a link, but in the morning of the hearing the clerk to email me to say the hearing was no longer going ahead. If a court clerk is willing to take the time to update an observer, I thought it would be worth trying again.

The second time around proved successful, and I was provided with a link to join (Case nos. 13775782 and 1377580T: unusually there were two protected parties at the centre of this hearing.) 

 I was hoping I could do the virtual equivalent of  sneak in and sit down at the back without being noticed, but Mrs Justice Arbuthnot spoke directly to me and asked me to confirm who I was. Mild panic did ensue. However, on letting all the parties know I was just observing as a member of the public, Mrs Justice Arbuthnot immediately welcomed me and asked one of the lawyers to send me the transparency order at the end of the hearing.  I provided my email address and the hearing continued on.

Despite this being a case management hearing, rather than a final decision-making hearing, it gave me first-hand experience of how a COP hearing is run, the representative’s role in drafting an order for the judge to approve and how the interests of the protected parties are upheld. 

It has also left me intrigued by what will happen to the two parties in question. Little was known about the family dynamics and capacity of one young woman for example. The representatives were trying to speak to her doctor and the care home of her younger sibling. These insights highlighted the vulnerability of COP parties.

My main motivation for observing a hearing was to gain experience in this area of law and how it works in practice. This was something I gained, and it has sparked my interest to observe more. Hopefully if more people know about how easy and receptive the court is, COP hearings will see many more public observers.

Helen Moizer is Assistant Legal Officer at the Free Representation Unit. She tweets @h_moizer

Photo by Jr Korpa on Unsplash

Two years on: A postscript to “Remote justice”

By Celia Kitzinger, 29th March 2022

Two years ago today, on 29th March 2020, the Transparency Project published my blog post about the first all-remote Court of Protection hearing of the COVID-19 pandemic.

With their permission, I’ve reproduced it below. (It was originally published here, under the title, “Remote Justice: A Family Perspective”.) This reprint is followed by a brief reflection on what – from my perspective as an observer – has changed over the last two years since I published this piece.

Remote Justice: A Family Perspective (as published on 29th March 2020)

On Tuesday 17 March 2020, less than 24 hours after the Prime Minister’s announcement to the nation to avoid all non-essential contact due to COVID-19, I attended the first entirely remote hearing for the Court of Protection.  I was there in a voluntary, non-official capacity to support someone I’ll call “Sarah”, whose father was at the centre of a serious medical treatment case.  

I’ve been supporting Sarah for just over a year, trying to get the Clinical Commissioning Group and the General Practitioner (GP) responsible for her father’s care to engage with her concerns.  This culminated in a formal ‘best interests’ meeting at the end of 2019, at which it was impossible to reach an agreement about her father’s treatment, and then – inevitably – to this court hearing.  

I’ve attended more than a dozen court hearings in similar circumstances (and acted as litigation friend in one), all focussing – as with Sarah’s father – on the question of whether clinically assisted nutrition and hydration is in the person’s best interests.  I’ve learnt a lot from families involved in these cases about their experience of the hearing itself, as well as in the run-up to and aftermath of the hearing.  Sarah’s experience was different – in part because this hearing was held remotely, via Skype for Business. 

Not surprisingly, there has been a flurry of publications about remote hearings and I’m glad to see a sustained focus on how to get them working efficiently and how to “make the remote hearing as close as possible to the usual practice in court” (Mr Justice MacDonald, 25 March 2020, The Remote Access Family Court, version 2).  The overwhelming response reported so far has been positive.  Despite acknowledging some technical glitches, judges, lawyers and journalists have said that they work well. 

But I haven’t seen anything published about how ‘lay’ participants in court proceedings – litigants in person, witnesses, or family members who are parties to a case – experience remote justice.  So, this is about Sarah’s experience, and mine.  Sarah can’t put her real name to this piece because of the Reporting Restriction Order: it is “strictly forbidden to allude directly or indirectly to the true identities of the anonymised persons” in the judgment.  But we discussed this piece before I wrote it, and she’s read it and is quoted in it and is pleased that it will be made public.

In other cases I’ve been involved in, families have often talked about the gravitas attached to a courtroom hearing: the formality of architecture and room layout, the elevated more distant seat for the judge, the ritual of rising when the judge enters, the element of theatre.  It can feel intimidating, but it is also reassuring evidence of the seriousness attached to the case and the ceremonial impartiality of justice.  This is important because by the time a family reaches court, the question of whether or not a loved one should receive life-sustaining medical treatments has been addressed on multiple occasions, sometimes over many years, in often muddled and confused ways and at times of heighted emotional intensity. It’s been raised at the bedside, in hospital corridors, in doctors’ offices – frequently without the full facts being known or taken into account, and without family members feeling that they have been heard.  The courtroom setting is designed as a formal arena for putting that right.

With a hearing conducted wholly over Skype, all that gravitas is lost.  Court architecture is replaced with the backdrop of barristers’ and witnesses’ living rooms.  The judge appears up close and personal, just like anyone else with his face in a little square on the screen.  And what we found in practice was that a preoccupation with the technology distracted people’s attention from the substantive content of the case.

Two barristers have written their own account of the hearing for Sarah’s father.  For them, “it felt comfortable and familiar relatively quickly” and they thought witnesses might feel “less intimidated”, pointing out that “many wore casual attire and sat in their homes, responding to the questions, but not having the full glare of the court on them.”  Although they acknowledge some technical glitches, they conclude: “what did we miss? In truth, nothing that mattered.”  Journalists, too, have been excited about the use of Skype in this hearing: one tweeted enthusiastically: “I have to say it is super-fascinating watching this pioneering Skype trial – I could get used to court reporting from home! Also enjoying the occasional meow from someone’s cat & checking out the décor of people’s gaffes.”   

But it was precisely the “casual attire”, the distracting pets, and the domestic backdrops that added to Sarah’s distress.  During the three days of this hearing, I was with Sarah in person.  We were in a solicitor’s office in an otherwise empty building, along with Sarah’s pro bono solicitor and barrister.  The four of us were there together – attempting social distancing as per government instructions – because we hadn’t heard that the hearing would be conducted by Skype until the day before.   We’d been told to prepare for a face-to-face hearing at Nottingham Civil Justice Centre and when the news came through that it would be moved to Skype, Sarah was on a flight from her home outside the UK, and I was on a train from my home in Cumbria.  As it turned out, I’m glad and relieved that Sarah and I were able to be together for the hearing, and also to have Sarah’s legal team there in person to explain what was happening.  I cannot begin to imagine how tough it would have been for Sarah to have to go through this alone – listening without support to impenetrable arguments between lawyers about her beloved father, conducted in language that was, as she reminded us “way above my pay grade”.  I think she’d have simply become disengaged and unable to follow the proceedings.  According to one study, that’s exactly what happened to litigants held in detention centres in the USA: they stopped engaging with the legal process (and were more likely to be deported as a result). 

Sarah’s father is referred to in the judgment as AF.  He had a stroke on 5 May 2016.  About a week later, while AF was still in hospital he started refusing to eat and drink and said that he wanted to die.  Doctors decided that AF lacked the mental capacity to make his own decisions and inserted a naso-gastric tube against his wishes.  He turned to his daughter immediately afterwards and said, “this is wrong”.  He pulled the tube out several times – despite attempts to stop him by putting mittens on his hands and a bridle on his nose to lock the tube in place.  Because he was “non-compliant” with treatment, doctors (again against his wishes) made a surgical incision in his abdomen and inserted a feeding tube directly into his stomach (a Percutaneous Endoscopic Gastronomy [PEG]).  He was then discharged to a nursing home where he has remained ever since.  At first, AF was “uncooperative” with feeding and personal care but this has diminished over the years.  Sarah believes he has just become “ground down” over time, because he has tried so hard to tell people that he doesn’t want the medical treatments that are keeping him alive, but he has been given them anyway.  He still refuses to eat and drink enough to sustain his life – a short trial without clinically assisted nutrition and hydration found he quickly became dehydrated.   Sarah’s barrister was presenting Sarah’s case:  that PEG feeding should stop and that her father should be allowed to choose for himself whether he wanted the food and drink that would continue to be offered to him.  Sarah accepts that he would probably refuse to eat and drink and would probably die.  

As the judge acknowledged, Sarah does not want her father to die but was “fighting for his right to die” because she believes that is what he would want. 

Sarah lost the court case.  The judge said that: “it would be categorically contrary to AF’s interests for him to be set on the path that will lead to his inevitable death ….  This may be a diminished life, but it is a life nonetheless which has, as I have said, intrinsic quality and from which AF derives pleasure and satisfaction.”  

Of course, she (and I) feel angry and upset by this judgment, and this inevitably inflects the way we feel about the hearing itself.  Sarah says: “I’m left wondering whether I should have waited and insisted on a face-to-face hearing. It just felt like a second-rate hearing.”

There is evidence that outcomes can be influenced by remote, as compared with face-to-face, hearings: one study found that 50% of applicants heard via video link were refused bail, compared to 22% of those heard in person.  Nonetheless, my own view is that this was a complex case and that the judgment is not an outcome of Skype but rather a combination of some challenging facts and this particular judge’s knowledge base, skills set, and established predispositions.  I think he would have come to the same decision if we’d all been face-to-face in a courtroom.  But a face-to-face hearing would not have left Sarah wondering if justice had been denied her father because of the circumstances of the hearing, or feeling that she missed out on her opportunity to influence the court.

For families in serious medical treatment cases, the court offers the opportunity of ‘being heard’, ‘speaking out’ and ‘giving voice’ to their relative’s wishes – often after a long period of feeling silenced and ignored.  It offers the opportunity of ‘being seen’ after having felt invisible within the medical system.  For Sarah, who had only ever met her father’s GP in person just once over the course of the three years the GP had been caring for him, and who felt she had been entirely side-lined by the professionals responsible for his care, this was her opportunity to ensure that they heard her truths about her father.  What actually happened instead was that Sarah became invisible to the court after giving her witness statement, and the relationship between her and her father was effectively erased by counsel for the Official Solicitor who acted as litigation friend. Right from the outset, Sarah felt that issues other than her father’s wishes were centre-stage.  Because this was the first all-Skype hearing, there was a lot of talk about managing the technology at the beginning and end of each day, and intermittently throughout the day as glitches arose and needed addressing. It was definitely a distraction.  At times there was what felt to us like an unseemly and self-congratulatory focus about being “the first” such case, about its “pioneering” role in remote justice.  Sarah said: “I’d like the judge and lawyers to know that this hearing was not about bigging yourselves up because you did the first Skype trial.  This is about my Dad.”  

For me, there was a marked lack of empathy displayed for Sarah throughout this hearing (Sarah’s own legal team excluded, of course).  Having, for comparison, lots of experience of how judges and lawyers engage with families when they are co-present in a courtroom, I was shocked by the lack of sensitivity to what Sarah might be thinking or feeling at various points and by apparent indifference to her presence.   This was partly – perhaps largely – accounted for by the fact that, except when Sarah was giving her witness statement and being cross-examined, she was not visible to other participants.  Due to bandwidth problems, the judge asked everyone (except himself) to turn off video-cameras unless they were giving evidence or questioning a witness.  This meant it was easy for lawyers to forget that Sarah remained in the virtual courtroom throughout the hearing.   They spoke about her in her presence – nothing uncomplimentary, but just the fact of hearing yourself talked about in the third person is quite unsettling.

Nobody – except those of us in the room with her – could see how upset Sarah became at various points and so they didn’t modify their behaviour to avoid causing her unnecessary distress.  For example, counsel for the Official Solicitor routinely introduced herself to each successive witness by saying: “I’m speaking on behalf of A…” (where “A” was the first name of Sarah’s father).  Every time she said this, Sarah winced as though she’d been struck.  For Sarah, she – her father’s daughter – was the person speaking on behalf of her father, not this woman who barely knew him.  To her dismay, Sarah had been refused permission to be litigation friend and that role had been taken by the Official Solicitor.  Sarah knows AF better than anyone else.  She wanted to be her father’s voice, to speak on his behalf when he could not.  It hurt to have this woman she’d never met speak on behalf of her father.  And she found it disrespectful that he was regularly referred to by his first name, “A”, rather than as “Mr F” (or even “AF”).   I hope and believe that if the lawyers had seen Sarah’s distress, they might have found ways of adapting their behaviour.  Maybe if Sarah had been physically co-present, the judge might also have avoided the (to non-lawyers) bizarre claim, in the published judgment (para. 2), that AF himself (acting via the Official Solicitor) opposed his daughter’s views and that AF himself was saying that it was in his best interests to continue with the PEG.

Even when Sarah was giving her witness statement, she didn’t feel as though she was ‘seen’ in court: “In a court room people can see body language. They can feel the pain and emotion when you speak about that moment of utter desperation that you went through.  But I was in a little one-inch box on a screen and being honest I bet half of them weren’t even engaged in looking at it – as the judge couldn’t monitor them to make sure they were paying attention.”

Sarah felt unable to get her message across as she would have done in person: “Skype took away from me the ability to look these people in the eyes – these people who have their opinions about my Dad and only knew him through third-hand notes.  I wanted to look them in the eyes and make them hear the truth but I was looking at a computer screen.”

There were the usual hassles with technology – some of which I assume will get ironed out as people become more familiar with it.  Two of the barristers involved described it as “pretty plain sailing” and other than technical glitches the only concern voiced during the hearing was the problem of not being able to see “the judicial pen” (because the judge was only visible from the shoulders up): this, for one barrister led to uncertainty about how to pace his speech with reference to the judge’s note-taking.  But my experience was much less positive. Given the speed with which it had been set up and the novelty of what we were involved in, yes it was impressive that it was even possible and huge thanks are due to the solicitor who took responsibility for enabling this.  But we had to contend with intermittent loss of connectivity and delays while key people reconnected  (including waiting for the judge to reboot his computer); batteries going on two different witnesses’ laptops such that they then had to dash to find their chargers and plug them in; and corruptions with recordings which led to the decision to stop and restart recording every 30 minutes.  All of these led to hiccups in the proceedings.  They aren’t so different from hassles in court when microphones don’t work, interpreters are late, bundles are unpaginated, documents are lost – but these technological problems were not instead of courtroom hassles, but additional to them.  It was still necessary to circulate paperwork to people who didn’t have it – and attempts to do that over Skype (so that everyone could see it on screen simultaneously) failed, resulting in a resort to e-mail – and some witnesses struggled with opening emails or finding Dropbox documents at the same time as running Skype.  

One disconcerting feature of Skype, which affected Sarah’s questioning in court – and that of several of the witnesses – was that there was often an audio time lag which meant that the judge or counsel doing the cross-questioning would think that someone had finished speaking when, in fact, they had not, so would begin to speak with what was experienced by the witness as an interruption.  The witness would stop – and so would the person ‘interrupting’.  A pause followed during which both waited for the other to continue.  Then both would start up again simultaneously and the same thing would happen again.  Sarah (and others) found themselves apologising for ‘interrupting’ when this hadn’t actually been the case. This was enormously frustrating for lawyers who were good communicators and wanted to listen to witnesses with patience and courtesy.  There were many occasions where people with really excellent communication skills were stymied by the technology.

In actual – rather than virtual – courtrooms (or in the waiting areas outside) it’s not unusual for family members I’ve supported before to hear solicitors and barristers joking together, catching up on gossip and exchanging news.  On occasion, this can be experienced as inappropriate and exclusionary for people new to the courts – but, lawyers do tend to know this and these conversations are often sotte voce on the front benches as family members seat themselves near the back.  One effect of remote justice was to amplify this ‘informal’ aspect of courtroom interaction because it is equally accessible to everyone online.  While we were waiting for a formal start one day, there was a discussion between the judge and some of the lawyers about the judge’s current reading matter: Daniel Defoe’s Journal of the Plague Year: it was beamed directly into our office where Sarah and I listened to a conversation about rich people decamping from the cities to the country to escape the plague, and speculation about this in relation to COVID-19.   Jokey informality also came into play as lawyers tried to fix technical problems.  At one point the judge asked a barrister to adjust her video, saying “We can only see the back of your head. We are all looking at your left ear”.  She replied, “My Lord, that may be my best feature!”.  Something similar could have happened in a courtroom, certainly, but it was, in this case, the remote technology that offered the opportunity for the quip and the technology that ensured we all heard it.   Perhaps, for some parties this humanises the legal process.  For others, this kind of levity threatens the formal justice process and diminishes the legitimacy of the court: it can work to undermine the impartiality of the process by displaying how ‘pally’ some of these professionals are with one another  (in particular, in this case, the judge and one side’s barrister), leaving the rest of us feeling outsiders – debarred from having that kind of exchange with the judge,  not ‘one of them’ by profession or by class.  

Sarah describes her feelings about the informality engendered by remote justice: “It definitely made me feel like the outsider.  In a court room I’d have felt like it was more of a level playing field.  I know there’s the pomp and ceremony of the court, but you can see the pecking order – from me at the bottom to the judge at the top, so you feel better because you know the structure.   The visible structure makes you feel safer.  But this felt chaotic, which made me feel nervous and insecure.”

Part of the chaos was the intrusion of ‘everyday life’ disrupting the formal ‘theatrical’ elements of the courtroom – the cat that mewed and knocked over books, the tail-wagging dog behind one witness, the mobile phone that kept going off on one witness’s desk.  Sarah was not impressed that the judge’s dogs barked loudly and long (necessitating a short break) when someone apparently rang his doorbell – not just once, but twice. 

Skype technology also provided everyone with views of the interiors of other people’s homes.  The judge, to his credit, had an entirely neutral backdrop (a blank wall, I think).  But that wasn’t true of most other people – although one solicitor mentioned having removed a picture of a tiger that would otherwise have been visible onscreen.  It would be worth considering the effect of some of these ‘backdrops’ upon a person who is not wealthy, who is unable to access legal aid, who is forced to scrabble around looking for pro-bono legal representation, and whose cultural heritage does not include large rooms with grand pianos or costly furniture – especially given that we were also treated to multiple superfluous Shakespearean quotations from the judge, which were not accessible to Sarah.  These views of other people’s domestic interiors with their displays of wealth or specific cultural capital can create, or reinforce, the impression that justice is administered by people with economic, educational and class privilege.  And as Sarah says, “I wanted my Dad to have his day in court – not in someone’s front room”. 

The term “remote justice” makes it sounds quite distant – and in some ways, it is.  A family member can’t see the lawyers in the flesh and can’t “look them in the eye” and a person can be rendered invisible when their camera is off.  But it can also be, paradoxically,  quite up-close and personal in terms both of the facial images on screen (the proximity generated by ‘remote’ technologies can sometimes be quite startling) and the home environment behind which doesn’t necessarily fit well with the ‘gravitas’ of the court, or reflect the seriousness of a decision about whether or not to honour an incapacitated person’s choices.   

Obviously, there are pros and cons to remote justice, and in the era of COVID-19 we have to accept that there is no realistic alternative.  Hearings conducted by phone and video-conferencing are not new and I know from other families I’ve supported that they are sometimes very much appreciated – for example when someone has difficulty travelling (perhaps due to disabilities or because they want to stay by a loved one’s bedside), or because of the expense of travel and overnight stays away from home.  I’ve also heard about the problems that can arise.  We avoided (I think) any embarrassing moments caused by forgetting to press “mute” or turn off our cameras in this hearing. In an emergency telephone hearing in a different case, about whether reinsertion of a dislodged PEG tube was in the patient’s best interests, a family member overheard a barrister’s doorbell ring, followed by the voice of a visitor expressing surprise that the hearing was not yet finished: the barrister was clearly audible as she voiced frustration and expressed her view that the hearing was a waste of time as the outcome was a foregone conclusion.  

Remote justice is a real opportunity with the positive potential to make justice more streamlined, efficient, accessible and inclusive.  I support its development both in the context of court hearings and in relation to best interests meetings that (in my area of work) regularly precede them.  But this needs to be well-designed, well-researched and well-delivered.  This is possible only if the experiences of everyone involved in these hearings are included in the analysis, and properly addressed, so that common law principles of fairness and natural justice are upheld, and seen to be upheld.  

According to Mr Justice MacDonald, the feedback from those involved in this case “has been universally positive”.  But neither Sarah nor I had yet contributed to that feedback or reported on the ‘things that mattered’ in our experience of a court hearing conducted wholly by Skype.  This is our contribution.  We would like lawyers and the judiciary to take it into account. 

The last word goes to Sarah: It felt like a second-best option. It didn’t feel professional. It didn’t feel like justice.  It felt like a stop gap to ensure a box was ticked – rather than a serious and engaged attempt to make decisions about my Dad.

What’s changed since 2020?

Since that first hearing in March 2020, I’ve watched more than 300 remote hearings in the Court of Protection, including another hearing involving Sarah (before a different judge) and several other hearings before this same judge (Mr Justice Mostyn). Not one of them has been anywhere near as brutal as this initial experience. The best have been characterised by compassion, generosity and humanity.

In fact, I found the quality of a remote hearing immeasurably better just a few weeks later when I watched Mr Justice Hayden, and blogged about it here (“When remote justice works“). All the intrusions that felt so distracting in that first hearing – the views of wealthy people’s domestic interiors, their pets, a judge who briefly left the hearing to deal with dogs barking when his doorbell rang – none of those has happened again. Nor has the casual conversation, and joking between judge and counsel. And it became glaringly apparent that the judicial quality of “empathy” is not constrained by the medium in which the hearing is conducted. It can shine through in remote hearings as much as in face-to-face ones (or, of course, can be missing in either).

I was impressed to find that the Transparency Project blog (which I’d written with some trepidation as to how the court would respond to overt public criticism) was widely read and commented on by lawyers involved in the Court of Protection. Overwhelmingly, they were not defensive or dismissive, but engaged with Sarah’s and my concerns and seemed determined to ensure that future hearings worked better for the families (and protected parties) involved in them.

Over the last two years, everyone (lawyers, judges, families and protected parties alike) has become more accustomed to the technology of remote hearings. For 18 months at the height of the pandemic, most of us conducted our relationships with friends and family via video-platforms: they became the ‘new normal’.

By the time of the second hearing involving “Sarah”, six months later – at the end of October 2020 (blogged here) – both she and I, and the professionals involved in the hearing, were familiar with the process. It no longer felt “second best”. This time her concerns were all with the outcome of the hearing, and not with procedural injustice.

I no longer believe, as I said in the blog two years ago, that “gravitas is lost” in a remote hearing. From the hundreds of hearings I’ve watched, I’ve learnt that what families mean by “gravitas” (dignity, seriousness, solemnity) does not in fact reside in court architecture, coats of arms, wigs and robes, or rituals of address and behaviour. In my experience, these external manifestations of “justice” can sometimes seem rather ridiculous, and the “performance” element of the courtroom can alienate lay people and distract everyone from the serious business at hand. Rather, the “gravitas” families appreciate is a quality of attention, a focus, a willingness to engage, in depth, with the medico-legal and ethical issues before the court. I’ve seen how good the Court of Protection can be at doing exactly that – in remote hearings as much as in physical courtrooms.

And where Sarah thought that the “pomp and ceremony” of the physical courtroom would provide the security of ‘knowing her place’ (at the bottom the pecking order, as she saw it), what I’ve seen repeatedly in remote hearings is that P and their family are put first and foremost at the centre of the hearing about them. That’s not achieved with theatricality, pomp and circumstance. It’s accomplished with humility – by fully engaging with the people at the centre of the case, and by paying attention to P and to the family’s presence and recognising their significance in the hearing. That’s what was missing for Sarah – in large part due to the distraction of new technology, used poorly, in ways that undermined the possibilities for her to be seen and heard. The effect of the video-platform was to exclude her from full participation. But it doesn’t have to be that way.

Overwhelmingly what I’ve seen in the Court of Protection since then is the use of remote hearings to facilitate and support the participation of both P and P’s family. Remote hearings have offered them the opportunity to be present when otherwise they would not have been able to – because they are sick in hospital (even sometimes in intensive care), because they are frail or vulnerable and cannot travel to a physical courtroom or would find it exhausting or painful to do so – or simply because they live a long way away from the court where the case is being held. Families often appreciate the opportunity to attend remotely – especially in serious medical cases where they want to spend every possible minute at their loved one’s bedside. Of course for others (and sometimes for the same family on a different occasion) it’s been important to attend face-to-face – and the court has been able to offer that opportunity more recently too.

Sarah did not feel “seen” or “heard” by the court – and it is literally true that she was not seen or heard after giving her evidence, since she was asked to turn off her video and mike for the remainder of the hearing. The lawyers seemed to “forget” she was there and conducted ‘business as usual’, talking about her and her father, in her (unacknowledged) presence in language she did not understand. What I’ve seen ever since then is that judges are keen to know who is on the platform and especially to know if P or P’s family members are there. They tend to greet them and explicitly welcome them to the court. Lawyers and judges often make reference to them during the course of the hearing: “I’m very conscious that P is listening to this and will not agree“, or “This must be very hard for the family to listen to”. The contrast with the apparent indifference to Sarah’s presence in court is striking – and it’s achieved on a video-platform.

An orientation to P and P’s family is now apparent even when (as in Sarah’s case) they’ve turned off their cameras and muted their mikes. I’ve watched hearings where (the court has been told) a device has been set up in P’s room in a care home so that the hearing is continuously transmitted for P (and their family) to watch it if and when they want to, but without the camera or mike being enabled at P’s end, so they can observe without the stress of being seen (or ‘watched’). Careful planning puts in place the opportunity for them to raise an electronic hand or switch on their camera (or ask a support person to do so for them) if or when they wish actively to participate. I’ve seen how well this can work in practice to enable P’s participation in a way that simply wouldn’t be possible in a physical courtroom.

My impression is that it’s been a steep learning curve over the last two years for the court – and the result is something that (mostly) works well. Familiarity with the technology (and ways of managing it when it fails), familiarity with the medium (because we all communicated mostly via video-platforms for so long at the height of the pandemic) and a willingness to explore with P and P’s family different ways of engaging flexibly across remote, hybrid and in-person hearings means more opportunities to ‘do justice’ well. As in-person hearings are now also possible, there will need to be more exploration of how best to build on what has been learnt during the pandemic that can be of enduring value beyond it.

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She has observed more than 300 remote hearings in the Court of Protection since 1st May 2020 – prompted initially to do so by this first disastrous hearing she was involved in as a support person for Sarah, which was also the catalyst for founding the Open Justice Court of Protection Project in June 2020.

Absconded

By Celia Kitzinger, 25th March 2022

The young woman at the centre of this case has “a notable story for someone who’s only in her early twenties – there’s a staggering amount of social and personal problems that P has dealt with in her very young life”[1] (said Ben McCormack of Garden Court North Chambers, representing P via the Official Solicitor). The judge said later that although “Mr McCormack’s word was ‘notable’, I’d suggest ‘harrowing’ might be a more accurate description of it”. 

She has a history of drug use, self-harm, self-neglect, homelessness and being exploited financially. She’s at risk of sexual exploitation, assault and rape – having previously reported being forced into sex work by people she calls “friends”.  She’s made six separate allegations of rape. She’s been pregnant and had a baby who was taken into local authority care.  She has a history of criminal offences, including shoplifting and threatening people with knives, and has served prison sentences. 

She’s been said to have “complex emotional needs and emotional dysregulation” and a “probable learning disability” – but it’s not entirely clear that these (uncertain) diagnoses qualify as ”an impairment of, or a disturbance in the functioning of, the mind or brain” (s.2(1) Mental Capacity Act 2005) sufficient to trigger the Mental Capacity Act.  More questions have been asked of the expert clinical psychologist who examined her, and produced a first report in December 2021. An updated report is awaited, but there is no agreed submission date for this, and some concern about the delay in his response about when he can complete this work.

The question has been raised as to whether the case should transfer to a High Court judge – partly because of borderline capacity issues (and the possibility that the local authority might seek to use the inherent jurisdiction), and partly because of the complexities raised when someone is believed (albeit here on an interim basis) to have capacity to engage in sexual relationships but not to have capacity to make their own decisions about contact.  

So far, though, the case remains with a circuit judge, His Honour Judge Andrew Berkley, in Manchester Civil Justice Centre.

On the day of the previous hearing, just over a month earlier, P was moved from prison to a new specialist placement with a very restrictive care package.  It includes: two staff with her at all times, trained in restraint and de-escalation techniques; use of a security vehicle for transport outside the placement; restrictors on windows; security alarms throughout the property; no access to an internet-enabled phone; and vetting of phone calls and visitors.

She’d been invited to attend court today to share her views about her placement and care package with the judge.  

But she’s gone missing.

On 18th March 2022, five days before this hearing, she “absconded” from the placement.  

She asked to go outside for a cigarette, staff accompanied her into the garden, she climbed over the garden fence – and when they tried to physically restrain her, she kicked them in the face, made it over the fence and disappeared.  She’d said she wanted to go to live with her boyfriend in another city and police believe that’s where she’s gone.

So, instead of the predicted court hearing focused on how she was “settling in” to her new home, the court is asking for a full explanation of how she was able to abscond, and an urgent review of her care plan.

The two hearings

I’ve watched two hearings in this case (COP 13836522), the first on 22nd February 2022 and the second on 24th March 2022.  

There’s a longer history of hearings, all (I believe) before HHJ Berkley, going back to October 2021.

The court has already found (for the purposes of s. 48 of the Mental Capacity Act 2052 (i.e. as interim declarations) that there is reason to believe that P lacks capacity to conduct court proceedings and to make decisions as to her residence and care, and contact with others – although (according to Ben McCormack), “on any view, she’s close to the borderline of having capacity to make decisions”.

The hearing on 22nd February 2022

The very restrictive care plan, and a new placement, were approved at the hearing on 22nd February 2022.

P didn’t attend this hearing because it was held on the very day of her release from prison and there was, said Ben McCormack, “some uncertainty about when the van was turning up, so we didn’t know quite when- there were too many moving parts”.

The judge asked why the application to approve this very restrictive care plan was made “urgently” on the very day of P’s release from prison, given that (he said) “when I read the care plan put together on 10th February, it was clear that this young person was going to be released on 22nd February – so the authorities have known she would be released today for about two weeks“.

There was no satisfactory response to that question and the judge remarked that “the local authority needs to reflect on that”, not least because “an earlier hearing, in advance of the day of her release, would have enabled P to attend the hearing” (as she has in the past, making – according to the judge – “colourful contributions“).

 The judge approved the care plan because he had “absolutely no doubt that while these restrictions are at the highest level of restriction, they are necessary and proportionate to the level of risk this young woman presents“. He had, he said, “been made aware at previous hearings of the extent to which P will utilise all means of communication available to her (whether her own devices or not) to contact people who present grave risks to her – including the serious risk of death“. This new placement and care plan was to attempt to prevent those contacts and also “to prevent [P] from absconding from the placement or in the community” (according to the local authority Position Statement).

The plan was to invite P to attend the next hearing to “see how she responds to the new situation”.  Her counsel suggested that hearing should be “in a week or two”. 

For the local authority, Arianna Kelly of 39 Essex Chambers thought that would be too soon.  For the first two weeks, she said, P would be “settling in”.  She suggested that it would be best to have a roundtable review in about three weeks and then return the case in court in four weeks’ time, as this would result in “a more meaningful review”.   

The judge, who had met P at previous hearings, said: “I share Ms Kelly’s time scale that the matter should be brought back in 3-4 weeks.  My experience of this young woman is that there may be a honeymoon phase and things will become more difficult as days pass.”  This turned out, with benefit of hindsight, to have been an unfortunate decision.  He did add, though, that “if a more urgent hearing is required… that remains within the ability of the lawyers to make an approach to the court”.

The hearing on 24th March 2022

At this hearing it was apparent that things had gone badly wrong.  Not only had P absconded, but there had been “internal miscommunication” about what was happening on the ground.

Counsel for the local authority (Arianna Kelly) reported in her Position Statement that P had absconded on 18thMarch but “was returned by the police”.  At the beginning of the hearing, she offered an “unreserved apology” for this error of fact.  

Counsel for P via the Official Solicitor (Ben McCormack) correctly stated in his Position Statement that P “did not in fact ever return home. She has thus been away from the property for five days and nights without either her own lawyers or (seemingly) the local authority’s legal team being aware of that fact”.  He expressed “major concern” that she should have absconded without her own legal team being notified until after 5 days had elapsed, just before this hearing.  It was of great concern, he said, that P had talked openly (on 17th March 2022 – the day before she left) to her solicitor and care staff about wanting to go to live with her boyfriend – and it seems that’s exactly what she did, the following day[2].  The care provider did not immediately notify the local authority social work team or its safeguarding team.  “It would have been better,” said Ben McCormack,“if that information had come to us earlier – within hours of her jumping the fence”. 

“What these incidents reveal (at best) is a lack of communication between the care agency and the local authority. That cannot be good for [P]. Urgent steps must be taken by the authority to ensure that the care staff are aware that key information that goes to [P’s] wellbeing needs to be shared with the local authority.” (Ben McCormack).

On behalf of P, Ben McCormack made three key points:

  1. The court and parties need a proper explanation of what has happened since P ran away. (The probation service also needs to know, as she was in breach of an order)
  2. The local authority needs to think about, and explain, what’s going to happen when this young woman is brought back unwillingly and locked up again. “Someone has to plan for this. How is it sustainable?  What are the plans for her to see her boyfriend? He might be a terrible influence. He might be a nice lad. Nobody knows. She lacks capacity to decide on contact, so somebody has to decide on her behalf. How can someone add a bit of sparkle to her life?  Looking at the carers’ records, she does a lot of smoking, and a lot of cleaning, and not much more than that.  When she’s brought back, there has to be some strategy for making life better for her, to see whether she could be persuaded that it’s a bit better for her to stay there – without having to drag her off the top of a fence and get kicked in the face for the privilege of doing so.”
  3. The case should come back for an urgent hearing. “Minds are focussed and evidence is obtained when a lawyer has to be back in court.  We would like it to be in person, in a courtroom with P having the opportunity to be able to attend.  She said last week she didn’t want to. She’s physically very well and could attend court if she wants to.”

The judge accepted all three points. He was concerned that this information about P having absconded (and not returned) had not been made available sooner, and emphasised “the significance of effective communication in respect to the situation of a young woman as vulnerable as P”. He was “gravely concerned” about the risks P was now exposed to and said “I need to understand, as do all parties, how this situation has arisen” and asked for a “speedy explanation”. He also decided to issue a direction to the clinical psychologist whose answers to follow-up questions are pending, that he should respond by 3 weeks today.

The next hearing is planned for 2.30pm on Friday 1st April, probably an attended hearing in Manchester – with an invitation to P to attend in person. 

Reflections

At the centre of this case is a young woman who “absconded” from a house with locked doors and windows, monitored day and night by people trained in restraint, because she simply didn’t want to be there.  

She’s evidently extremely vulnerable to exploitation and abuse but, as Munby J put it, “What good is it making someone safer if it merely makes them miserable?”

I don’t know if P was happier before she was locked up – first in prison and now in her placement. Maybe not. Maybe her own decisions didn’t lead to a happy life, any more than the decisions of the court on her behalf seem to have done.  But she is clear that she wishes to be free of restrictions and allowed to leave the placement – despite what the Official Solicitor says are “real and significant risks” to her in doing so.

The tension is between, on the one hand, P’s autonomy and freedom, and on the other keeping her safe from harm. As Ben McCormack put it, “she’s been locked up for her own good, but she doesn’t like it”.  

This is a classic dilemma for the Court of Protection – posed here in a particularly acute form, not least because this very vulnerable young woman seems to be close to the borderline for capacity to make her own decisions.

Much may now depend on ensuring that the placement is attractive to her not just because it is “safe”, but because it offers her opportunities for a more fulfilling life, including her right to have personal relationships with other people.

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia

[1] We are not permitted to audio record court hearings. Quotations are as accurate as I can make them, based on contemporaneous (touch-typed) notes, but they are unlikely to be verbatim.  The words quoted here were said by Ben McCormack in his very useful opening summary to the hearing of 22nd February 2022.

[2] It also seems that (contrary to the restrictions approved by the court in the order of 22nd February 2022), P had acquired an iphone, and it seems likely that she used it to make the arrangements to abscond.

Photo by Ye Jinghan on Unsplash

A long wait for medical recommendations – still in hospital after 18 days

Claire Martin, 24th March 2022

This is the third in a series of hearings concerning Mr M, a man with severely ulcerated legs who is declining, or avoiding, medical assessment. He has a long-standing diagnosis of schizophrenia and depression and is said to be addicted to Class A drugs (heroin and/or crack cocaine).  He lives in supported living accommodation. 

The first hearing was a result of an ‘urgent’ application by the Local Authority on 8th February 2022, to take Mr M (forcibly if needed) to hospital for assessment of his leg ulcers. The hearing (blogged here by Celia Kitzinger) was adjourned because Mr M had no representation.

The second hearing was on 14th February 2022 (blogged here). This time, Mr M was represented via the Official Solicitor (Katie Gollop QC) who supported taking him to hospital for assessment. Mrs Justice Theis approved the order that Mr M should be taken to hospital (forcibly if necessary) for assessment of his leg ulcers and ordered that the case should come back to court the following month to determine his best interests in relation to treatment of his leg ulcers (and also to establish his litigation capacity). 

The third  hearing , on 11th March 2022 – again before Mrs Justice Theis – is the one I’m reporting here.

I was expecting to hear about how Mr M had fared being taken to hospital against his will, what the recommendations were for his ulcerated legs and which one of those recommendations the court would decide was in his best interests. None of these issues was discussed at the hearing.

I did learn that Mr M was still in hospital and that medical recommendations for treating his legs were still to be made. In addition, there was a possibility Mr M is “moving along a spectrum from being unable to make a decision to having capacity” (Kate Gollop). 

It was also stated that Mr M cannot go home, though he is ‘clinically fit’ for discharge from hospital. So an interim place to live is needed, but it seemed that no one has started to look for this yet. I don’t know whether Mr M was thought to be able, or moving towards being able, to make a decision about that for himself. 

So, what looked like a (relatively) straightforward decision about treatment for a leg has metamorphosed into a much more complicated multi-agency case about capacity, residence, health, and care.

The hearing: 11th March 2022 

Mr M had been taken to hospital on 21 February 2022, a week after the previous hearing at which the judge had authorised it. There was no discussion about how this went for Mr M. I was hoping it had been conflict-free for him and he wasn’t distressed by the whole experience. 

A consultant vascular surgeon had examined his legs and said that there was currently “no clinical urgency to treatment” but that the infection of his legs, if combined with “non- compliance” with community treatment, could lead to sepsis and death.

I was quite surprised that Mr M was still in hospital, and that clear medical recommendations were still to be made – he had been there for two weeks and four days. Katie Gollop (counsel for Mr M) said that:

“The longer he stays in hospital the more communicative he becomes. The Official Solicitor [reports that] as time has gone on, he will engage with them and is forming some relationships, and is beginning to talk about his legs. He’s said ‘You’ve had an arm you’re not taking a leg’. When explained that he might die without amputation. He says, ‘That’s [his own first name] decision when the time comes’. He doesn’t want to hold on to his leg at all costs. If the schizophrenia is NOT causing an impairment of thinking and if his drug dependency lessens, then it appears that he is moving along a spectrum from being unable to make a decision to having capacity. That may have implications. There simply isn’t sufficient evidence that he doesn’t have capacity to make a decision for example about where he lives, let alone these other matters. It’s not an emergency now.”

Mr M was willingly taking antibiotics for his infection and that was”‘holding the ring” (Kate Gollop), and the infection had not moved into the bloodstream. 

Mr M had been seen and assessed by the medical team.  (An independent expert, Mr John Scurr, consultant surgeon had attempted to assess him, but Mr M had refused to speak to him, pulling the sheet over his head. Katie Gollop said that the independent expert’s report was “not very helpful and simply said amputation is the way forward”). 

The medical view, said Katie Gollop, had changed:

“Last time [it] seemed very clear: there was one single recommendation from the Trust – amputation. Subsequently, [in a] surgical MDT this week which comprises a lot of surgeons, seven I think, [they were] divided as to the best way forward. There isn’t a consensus, [there is] more flexibility as to the best way.” 

I did wonder why it was that Mr M had been in hospital for 18 days and clear medical options had not been reached, especially given that this 11th March 2022 hearing had been planned in advance (my understanding was that this was originally meant to be a final hearing). 

Emma Galland (counsel for the NHS Trust, The Royal Free London NHS Foundation Trust) later clarified with Mrs Justice Theis: 

EG: The discussion in the consultant body this week was not an MDT – it was a superficial discussion. The result was that five thought above knee amputation was not supported, and two thought that it was. After an MDT meeting this morning I haven’t heard yet – to consider the options. 

Judge: The five who did not support what did they support?

EG: It was a straw poll not a proper MDT meeting. I met with the wider team – his [the consultant vascular surgeon, I think] view was that the ulcer has been there a long time, he can weight bear, given the obvious impact on quality of life if the leg is removed where there is no significant risk, then at this time he wouldn’t consider an above the knee amputation. He didn’t go into detail about other options. I didn’t see Mr M but I heard him clearly and loudly expressing his views. One nurse has been allowed by him to change his dressings – she has had discussions with him about his preferences. She thinks he is becoming more capacitous. ….. I’ve just had an email – the  MDT is next Tuesday 15 March.

Capacity

During his time in hospital Mr M has been assessed by two consultant psychiatrists, both of whom agreed that Mr M did not retain capacity to make decisions about his physical health. He has also been seen by the ‘drug abuse team’ and prescribed methadone, which he was taking. 

Lots more things were being considered than the initial urgent application to take Mr M to hospital for assessment of his legs: life for Mr M after medical treatment or surgery, and capacity to litigate and make decisions for himself about his health, care and where he lives.

An advocates’ meeting had agreed that further information was needed: recommendations for surgical treatment, further capacity assessments and updated information about mental health treatment, as well as options for future social care provision and the possibility of re-ablement/rehabilitation therapy. Everyone seemed to think it was clear that Mr M couldn’t go home to where he’d been living – the NHS Trust position statement said: “… it is noted and accepted that he will not be returning to his previous accommodation”. 

I felt a bit confused about this as we were told at the last hearing that he could navigate the stairs currently, and did so regularly to go out and source drugs. This wasn’t addressed further and discussions were focussed on discharge, which bodies had responsibility for what, and the timetable for decisions. 

‘Energising’ the CCG

Since Mr M is no longer being assessed in hospital (the purpose of the previous order to take him there and deprive him of his liberty), there is now no legal framework keeping him there. The applicant Local Authority was concerned that the CCG would not be willing to assess Mr M while he was still in hospital, but that discharge (with increased healthcare needs) depended upon Continuing Healthcare funding (via the CCG)

The CCG has now been joined as a party, represented by Eliza Sharron, who said: 

“There hasn’t been any direct referral from the Trust in relation to discharge – [he] is not on any list for medical discharge. It wasn’t until the pre-hearing discussions today that interim medical discharge was being considered. We need to consider the relevant funding streams that would be appropriate. The CCG is not saying it would not be involved but it would be the discharge to assess pathway [see NHS definition of this term here] at the moment, to identify appropriate places upon discharge. The CCG will be partly dependent upon other parties as to assessment of capacity on discharge. Timeframe – I don’t have instructions but the CCG can work within it by looks of it.”

My understanding is that the CCG will be responsible for funding any interim continuing healthcare needs for Mr M, before medical recommendations for his legs are made, further capacity assessments are completed, and (should he be deemed to lack capacity for medical decisions) a best interests judgement is made about treatment for Mr M’s leg. 

There was talk of whether the Mental Health Trust needs to be joined as a party. Eliza Sharron explained:

ES: Health and Mental Health needs to be joined up. The CCG would anticipate working with the NHS and the Mental Health Trust to identify an appropriate package of care upon discharge. 

J: Does the MH Trust need to be joined?

ES: We are allowed to notify them of proceedings but not be joined. The Trust is directed to file a substantial body of evidence. They may wish to make representations on the evidence sought.

The applicant Local Authority has responsibility for Mr M’s Section 117 aftercare (any care that is needed in the community following detention under Section 3 of the Mental Health Act 1983) and it was Mr M’s social worker who originally grew increasingly concerned about Mr M and the condition of his leg, prompting the urgent application to the Court:  

Ulele Burnham: I can see the sense in Ms Galland’s position [that Mr M cannot remain in hospital whilst a recommendation for treatment of his leg is decided] … coordination has been missing in this case. There is commission of Section 117 services and also clinical needs. Whatever the situation that emerges there is unlikely to be a position where the clinical position does not guide the way forward.

The impression I got was that the CCG was being somewhat recalcitrant and reluctantly included in Mr M’s provision of care, given that the Local Authority had, up to now, been fully responsible for funding Mr M’s care in the community. Eliza Sharron, for the CCG, said that the NHS Trust hadn’t made any referral to the CCG for assessment for discharge. As Ulele Burnham said, coordination seemed to be missing for Mr M. 

Mr M was still in hospital after 18 days (albeit without apparent complaint), there was still no clear medical recommendations, and he was to be discharged to a new place to live but the relevant bodies had not organised themselves to facilitate this or assess his wishes or capacity to make the decision himself. I wasn’t sure from this hearing who was meant to be doing capacity assessments with Mr M for litigation capacity, decisions about his legs, where he lived and what care he needed. Mr M’s voice about what he would like for himself was certainly absent at this hearing. 

I lost connection for 10 minutes as we neared the end of the hearing. As I rejoined, Counsel and the judge were discussing the intricacies of the draft order, and what would be included in recitals:

Judge: … craft something in the recitals that energises the discharge planning – with an outside timetable and if parties can come up with a package that can take place beforehand. Miss Burnham …. You are here as the applicant but essentially here as a spectator. … there should be a direction in the order that the CCG will step in to the lead role in the proceedings – and if not, to explain why. 

Mrs Justice Theis was clearly alive to the fact that multi-agency involvement runs the risk of a metaphorical passing of a hot potato. 

The next hearing is planned for Friday 8th April at 12noon. 

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

Note: I would like to thank Ulele Burnham, Emma Galland and Katie Gollop QC for sharing the position statements for their clients, on which I have drawn. I’m also grateful to Ulele Burnham for providing me with the Transparency Order. 

Photo by Jason Leung on Unsplash

Available options and best interests in a disputed end-of-life treatment case

By Celia Kitzinger, 21 March 2022

The judgment is now published: London North West University Healthcare NHS Trust v M & Ors [2022] EWCOP 13 (21 March 2022)

On 14th March 2022, I watched a one-day final hearing about a young man in a prolonged disorder of consciousness from which (doctors say) he will never recover.  

He also has respiratory failure due to irreversible lung damage caused by chronic aspiration of saliva and gastrointestinal contents, the origin of which pre-dates the cardiac arrest and is due to untreated type 1 diabetes, and which was subsequently made worse by hypoxic brain injury after a cardiac arrest at home.

The Trust was seeking declarations that continuing life-sustaining treatments was not in P’s best interests and that it was in P’s best interests to give him morphine and midazolam (opposed by the family) in accordance with their end-of-life care plan.

At the time of the last hearing, on 25th February 2022 before Moor J (see When doctors are not willing to offer treatments), doctors had stopped giving him any form of clinically assisted nutrition.  This is because the damage to his gut (gastrointestinal dysmotility), means that he can’t properly absorb nutrients, and also that food that goes down into his gut is liable to come back up into his lungs, causing aspirational pneumonia. 

Mr Justice Moor approved morphine and midazolam to manage P’s (possible) pain and distress, but deferred the decision about life-sustaining treatments until today’s hearing to allow the family to get their own independent expert reports and all the second opinion doctors consulted by the various parties (including the family’s choice of experts – a gastroenterologist and a neuro-rehabilitation specialist),  that P is now dying as a result of lung damage.

At the hearing I’m reporting here, before Mrs Justice Judd on 14th March 2022,  the Trust seeks a declaration that “it is lawful and in P’s best interests for IV fluids and other life-prolonging treatments to be withdrawn, and for him to be transferred to a palliative care pathway as per the proposed care plan”. 

In the view of the Trust, “continuing to provide hydration and active symptom management such as deep suctioning is an interference with the natural process of death and is prolonging his life with no benefit to him. If P can indeed experience distress, then this can fairly be called cruel”.

Treatments that are NOT available options: Clinically assisted nutrition, CPR and treatment escalation

As at the previous hearing (on 25th February 2022), there were some treatments – including the provision of nutrition – which were not ‘available options’, i.e. doctors had decided they were not clinically appropriate, and so they were not ‘on the table’ for the court to consider in making best interests decisions.  

As I described in my earlier blog, at the previous hearing just over two weeks ago the judge had asked the Trust to reconsider the matter of clinically assisted feeding (withdrawn 10 days earlier) to increase the likelihood that P was still alive for this second hearing.

Clinicians had stopped feeding P after nasogastric feed was observed coming out of his nose. The hospital says that “as a result of P’s brain damage, normal gut movement is disordered such that food may flow forwards or backwards, or remain in place, giving rise to risks of aspiration into the lungs, or food and air becoming trapped in the gut…. Significant quantities of small bowel contents continue to be aspirated from the stomach”.  

The Trust’s position then, as now, was that continued feeding is clinically inappropriate.  This means that they were not asking the judge to make a decision about feeding – this was not an available option.  

A judge cannot order a doctor to provide treatment to a patient if the doctor concludes that the treatment is not clinically indicated (§18 Aintreee University Hospitals NHS Foundation Trust [2013] UKSC 67).

However, P’s parents and the Official Solicitor were concerned that P’s condition, combined with ongoing lack of nutrition, might mean that he wouldn’t survive until the next hearing. Mr Justice Moor found this argument compelling and gave an ex tempore judgment asking the Trust to reconsider its decision to withhold nutrition.

The judge said:

I am not making an order.  I am not even making a declaration.  All I ask in this judgment is for the Trust to consider it again, on the basis that this court should have the ability to deal with this case at a final hearing – rather than the matter being taken out of the court’s hands …..  I intend merely to ask the Trust to consider the matter again”.

As I said in my previous blog, this is as close as I have ever heard a judge come to putting pressure on clinicians to administer a ‘clinically inappropriate’ treatment that is not on offer as an ‘available option’.

The judge’s reasons for making that request were summarised in a recital to the Order resulting from that hearing which states:

“And upon the Court declining to make any order or declaration in relation to the provision of intravenous nutrition to the First Respondent on an interim basis, but inviting the Applicant to reconsider its position that it will not provide any nutrition in view of the fact that:

  1. the First Respondent has been without nutrition since 15 February,
  2. the application was made on 22 February,
  3. it is necessary for the application to be adjourned because no party other than the Applicant has had the opportunity to obtain independent evidence,
  4. it appeared to the Court desirable that the ring be held to enable a final hearing to take place in the First Respondent’s lifetime.”

We learnt at this subsequent hearing that the Trust had indeed reconsidered the matter by commissioning further assessments from three additional clinicians who “all agreed that clinically assisted nutrition (either enterally or parenterally was not clinically appropriate in the context of P’s overall condition including his respiratory condition and profound brain injury.”

This was also the view of the parents’ own expert witness – a Senior Consultant in Gastroenterology and Intestinal Rehabilitation.

The hearing on 14th March 2022 did not, then, include any consideration of whether clinically assisted nutrition was in P’s best interests.  This treatment remains not an available option.

As counsel for the parents put it: “No clinician is willing to provide clinically assisted nutrition for P and [the parents] acknowledge with great sadness that this cannot be the subject of a best interests decision”.

This is an important point because it draws attention to, and reinstates in practice, the (sometimes blurred) boundary between ‘clinically inappropriate’ treatment and treatment considered not to be in the patient’s best interests. 

I was relieved to see that there were no further attempts, at the hearing on 14th March 2022, to do anything that might be construed as putting pressure on clinicians to reconsider their decision about what treatments were, and were not, ‘clinically appropriate’.

The Trust will also not provide cardiopulmonary resuscitation, admission to the intensive care unit or high dependency unit, surgical intervention, or antibiotics. Like nutrition, these treatments are not ‘clinically appropriate’ and so they are not available options for consideration by the court.

Treatments that ARE available options: hydration, suctioning, oxygen, morphine and midazolam

The Trust was willing, in principle, to provide hydration, suctioning and oxygen if the court decides they are in P’s best interests (even though they are of the view that they are not in P’s best interest).  We heard that these three treatments “come as a package” and it’s “simply not clinically possible to slice and dice them”. The Trust was providing these treatments at the time of the last hearing, and has continued to do so.

The Trust is also willing (and believes it to be in P’s best interests) to provide morphine and midazolam.  It turns out, however, that the opposition of P’s parents and partner has meant that P has been provided with only limited pain-relieving and sedative medication since the last hearing.  This was of considerable concern both to the Official Solicitor and to the Trust.

At the hearing on 14th March 2022, the applicant Trust (represented by Caroline Hallissey) asked the judge to approve an order that it is not in P’s best interests to receive any  life-sustaining treatments (including hydration, suctioning and oxygen) and that it is in his best interests  to receive end-of-life palliative care according to a care plan that includes intravenous morphine and midazolam.

The family (P’s parents were represented by Sophy Miles; P’s partner was a litigant in person) want all possible life-sustaining treatments to be continued. The parents are “morally unable to give their agreement to a plan that would shorten P’s life. They do not wish him to die”.  They also do not agree with the Trust’s end-of-life care plan in relation to pain relief and sedation: they believe that P is being kept free from pain on his current regime and that increasing morphine and midazolam will hasten his death.

The Official Solicitor (P’s litigation friend, Katie Gollop QC) initially reserved her position because – at the time of writing her Position Statement – she’d not had any opportunity to hear the family’s point of view subsequent to expert evidence having been obtained, or to investigate what options were available if the court were to consider continuing life-sustaining treatment to be in P’s best interests.  In her Position Statement, she accepts that P “will not live longer than a few weeks at most”, even if his current treatment regime is continued and is concerned with “how best to achieve a good death for P and the three people dearest to him”.  Noting the breakdown of the relationship between the family and the treating team at the Unit where P is cared for, she suggests that he might be moved to a different setting (maybe a hospice) where he could continue to receive some limited life-sustaining treatments, along with end-of-life sedation and pain-relief. This could allow a ‘good death’ in an atmosphere that would help his family to “come to terms with his loss so that they were free to remember him as he was, not as he is now”.  In her Position Statement, she describes this as a “third way”: “it is not the sedated withdrawal of all treatment advocated for by the Trust, nor is it the lightly medicated continuation of all treatment that the family would want”. 

Constrained options: A proper use of the court’s time?

By the beginning of the 14th March 2022 hearing, Katie Gollop QC knew more about the very limited options available in practice than had been apparent at the time of writing her Position Statement.

Although the court was being asked to decide whether or not continuing life-sustaining treatments (hydration, suctioning, oxygen) were in P’s best interests, it had become apparent that if the answer were to be “yes”, the specialist Unit currently treating P would not provide them.  Instead, P would be transferred back (“repatriated’) to the hospital that had referred him to the Unit.  

This is because the Unit is a tertiary service.  Patients are referred to the Unit from hospitals who are contractually obliged to accept patients back again if it turns out that they’re not suitable for treatment there.

The applicant Trust had already provided an email to the court providing written confirmation that the referring hospital would not offer IV fluid if he returned to them.

As Katie Gollop QC put it to the judge, “It would be unfortunate for you to declare it is in P’s best interests to continue with life-sustaining treatments, only for the second hospital to bring an application to this court in the same terms.  None of us would want P transferred for no useful purpose”[1]. 

Even if the referring hospital were willing to provide P with life-sustaining treatments as the parents want (and as counsel for the Official Solicitor was considering may be in his best interests), there were other difficulties with the plan to move P from his current place of care.

One problem is that the move itself might cause him to die sooner than he otherwise would.  The family’s own choice of expert, Dr Chris Danbury[2], gave evidence of a high risk (“more likely than not”) of P dying during or shortly after the transfer.

Another problem is that the referring hospital is less well-equipped to provide the level of care that P needs. He’d most likely be treated on an acute medical ward with a lower nurse/patient and doctor/patient ratio than he receives on the specialist unit. This means a  less well-managed death.  

There had been some consideration of moving P to a different hospital or to a hospice, but Dr Danbury’s view was that  “transfer to another acute hospital or to a hospice is unlikely to be accepted by those units if active life sustaining treatment is continued”.

So, in practical terms the options seemed to be either:

 (1) life-sustaining treatment is withdrawn, in which case P stays in the specialist Unit and dies in accordance with their end-of-life plan; or 

(2) life-sustaining treatment continues and P dies in an ambulance on the way to the referring hospital or shortly thereafter, and has a less well-managed death. 

The option the family want – he doesn’t die at all, he recovers enough to be able to return home to be cared for by his family  – isn’t seen by any of the experts as a feasible option.  As the Official Solicitor put it: “Whilst this may not be something that those closest to P (his parents and partner) are able to accept, the medical evidence is all one way. P’s clinical condition is grave and irreversible and he is dying”. 

Counsel for P via the Official Solicitor invited the court to consider whether there was any purpose in holding the hearing, given what appeared to be the very restricted options before the court: “you might decide that this is not a proper use of the court’s time”. 

Gollop:  Is the position of other potential treaters or other Trusts that no matter what the court declares to be in P’s best interests – and I think that is the position – they will not provide it, whatever the court declares?

Judge: The court does not have the power to order clinicians to provide treatment.

Gollop: So, is this a good use of the court’s time? Is it right to put the family through giving evidence, if transfer from one hospital to another would be to no useful purpose and put him at risk unnecessarily?  Part of the puzzle we don’t have is if there’s scope for the CCG to step in and see if there’s a provider that would provide treatment.  I’m concerned about whether this should be bottomed out before we go any further.

The Official Solicitor (Katie Gollop QC) referred to the case of N v ACCG [2017] UKSC 22 (§ 38 onwards) which she said had been “troubling me over the weekend”. That case also involved the problem of whether and how the court should engage with matters that are “not on the table” as “available options”.  The Supreme Court upheld the decision that the court is entitled to take the view that no useful purpose can be served by a hearing (although Lady Hale took issue with the claim that the court does not have ‘jurisdiction’ over some matters): 

“It was a case in which the court did not have power to order the CCG to fund what the parents wanted. Nor did it have power to order the actual care providers to do that which they were unwilling or unable to do. In those circumstances, the court was entitled to conclude that, in the exercise of its case management powers, no useful purpose would be served by continuing the hearing.” (§44 N v ACCG [2017] UKSC 22)

Mrs Justice Judd decided to go ahead with the hearing anyway.  Later, she said that “the family would have found it difficult if it had not been heard”– hinting at therapeutic jurisprudence.

From this point on (about half an hour into the hearing), the outcome felt to me like a foregone conclusion.

Oral evidence was given in court by the following people:

  1. the treating clinician
  2. independent expert Dr Chris Danbury
  3. independent expert Dr Andrew Hanrahan
  4. P’s mother
  5. P’s father
  6. P’s partner.

I will describe each in turn.

1.  Evidence from Treating Clinician

The treating clinician had already submitted a statement explaining that if the court were to find that it’s in P’s best interests to continue to be provided with hydration, suctioning and oxygen, the Unit would need to transfer P back to the referring hospital in line with their contractual arrangements.

If, on the other hand, the court were to decide that life-sustaining treatments were not in P’s best interests, her Unit would arrange for end-of-life care in situ.

Oral evidence in chief

Asked by her own counsel (Caroline Hallissey) to update the court on how P is now, she said: “He’s slowly fading is the best I can say. His condition has deteriorated since we were first in court. It’s variable, with good days and bad days but there’s a slow downward trajectory”. 

Asked about the risks of transferring P, she explained that there was already evidence that moving P causes problems because:

 “On his way over to us [from the referring hospital] he developed mucus plugging and got partial collapse of lungs. He had a period on ICU with positive pressure ventilation and if we hadn’t done that he’d have died very quickly. In transferring him back to [the referring hospital] we have a ceiling of treatment in place and there’s a strong possibility that if he was in an ambulance, he would likely get mucus plugs and not survive that journey.  Just turning  him in bed, repositioning him, we get plugging. Transfer would involve putting him on trolley, into ambulance, taking him back off the ambulance, taking him up to ward – there’s a strong possibility he may plug off and sadly die in ambulance”.

Asked what would happen if the court grants the declaration sought by the Trust, she said:

“Our Unit is specialist in providing end-of-life care for this group of patients. We are experienced in the use of IV morphine and midazolam – carefully titrated. This is important in particular for someone with intermittent respiratory distress, versus the more standard approach of bolus which takes 30-40 mins to take effect. Most units use the subcutaneous route. We use the IV route which works better, gives us more nuanced control, and means the patient can often manage on smaller amounts of meds. Our nursing staff have lots of experience with this.”  

Finally, she was asked for her perspective on what the Official Solicitor had described as the “breakdown” between clinicians in her Unit and the family.  

“My perspective is this is one of the most difficult situations a family can face. Looking at loosing someone who is very much cherished. People can react in a way that can be challenging for us to deal with. We do our very best to support families and this will be hard for any team under these circumstances. We’d do our best to support the family and see them as part of the team.”

Cross-examination by counsel for P’s parents

In cross-examining the treating clinician, Sophy Miles (for P’s parents), asked first a series of questions about past statements made by the treating team to P’s parents, and then about further investigations.

The parents had clearly placed a lot of weight on (their interpretation of) statements made by the treating team at the Unit in the early days after P’s transfer there.  

Shortly after his arrival at the Unit, a senior clinician had said, “rest is extremely important in allowing the brain to recover”.  Counsel quoted this from the records and said: “the message to [his mother] was about the possibility of P recovering at that stage, wasn’t it?”

“At that time, we’d known P for not much more than 24 hours. It was not possible to be clear what we were going to be able to do with him. He was in the ICU with a collapsed lung. The expectation is that we try to get the best that we can, travel hopefully, but it doesn’t necessarily mean that they are coming for rehabilitation”. (Treating clinician)

On another occasion, P’s mother expressed the view that P was minimally conscious (rather than vegetative) and the same senior clinician “agreed that was possible”.  The treating clinician did not dispute that this had been said and pointed out “we had not yet started to assess him”.

After the decision to stop providing P with nutrition (on 15th February 2022), that same doctor “said there’d be a consideration of reintroducing feed cautiously”, said counsel (acknowledging that nutrition was “out-with the court’s medical decision-making).  The treating clinician accepted that reintroduction of feeding can sometimes be possible: “it’s what we call ‘drip and suck’ – we give IV fluids, suction out the stomach, and sometimes it will settle down within a day or two and we can try reintroducing the feed.  In P’s case, there were small bowel contents refluxing and dysmotility, and we were unable to reintroduce the feed once we realised the severity of that. It would reflux back and aspirate into his lungs, which is what had been happening. And, therefore, it was contraindicated.”

A string of questions explored with the treating clinician the  family view that they’ve seen evidence that P is conscious.

Miles:  There seems to be an acceptance that someone in P’s position might respond better to family. Is that right?

Doctor: Yes. It’s very often the case that people will respond better to family members. We have family there as part of the normal assessment process.

Miles:  You’re aware that family believe that P responds to them?

Doctor: I’m aware that is their position.

Miles: There is a statement in the bundle from [Partner]. She talks about playing some music to P and her sense that he responds by his expression to her.

Doctor: I don’t think there’s any dispute that he may at times respond, and may be on the border of the vegetative state and the minimally conscious state.  All we’ve seen are features consistent with the vegetative state, but we’re very aware that patients may respond preferentially to family and we will normally spend time exploring different responses with family.  We cannot carry out an assessment to determine whether P is in the vegetative or minimally conscious state because of his overall extreme medical condition.

Miles: [P’s father] spends a lot of time on the ward, doesn’t he?

Doctor: He does indeed.

Miles: And he observes his son very closely indeed.

Doctor: We have no dispute that he may have some awareness. The disagreement is not about whether he demonstrates consciousness. The disagreement is about what that may mean in terms of his future potential for recovery.

Counsel asked whether there would be any harm for P in having a CT scan to examine his lungs to see whether there was any improvement.  “Well, yes,” said the doctor, “even turning him over in bed is causing desaturation. There’s a risk in moving him off the bed onto the scanner and back again. And there’s no point in doing that. The damage to his lungs is clear on the CT scan done by [the referring hospital] and the second scan showed a progression of that”.  The judge asked, “so it wouldn’t get any better?”.  “Correct”, said the doctor.  What about an ultra sound examination at P’s bedside? “It’s physically possible but there would be no point. It won’t change the diagnosis. Ultrasound won’t tell us anything we don’t already know.”

Counsel moved on to the question of pain relief, and the doctor described how “we’re partially managing his symptoms”, “taking the edge” of them, but “hand on heart, not providing the level of palliative care and relief of symptoms that we would normally provide in an end-of-life setting”. Counsel pointed out there “are times he’s described as very comfortable”. The doctor agreed, but said, “the concern we have is about the times when he’s not”.  Counsel said P’s father was “concerned that the paracetamol dose has been increased and may cause gastric bleeding”. The doctor replied that “paracetamol is the safest and least sedative pain relief we have in our armamentarium”.

Finally, counsel asked about moving P back to the referring hospital.

Miles: You’ve said that a move for P would potentially be quite dangerous. If you had another patient in that state that you were not going to treat at your Unit, would you transfer them back to Hospital even if it posed a risk?

Doctor:  If the patient had an acute infection that was likely to resolve in a day or two, we’d stabilise them and transfer in a day or two. Here there is no light at the end of the tunnel.  It’s not the case that if we wait, things will improve.  We are a hyperacute centre. We have eight beds to serve the whole of London.  I don’t think it would be at all right to move him back to [referring hospital] but I don’t have a choice.  […]. The challenge is that the Unit has to manage all the patients. NHS England has to look after all of its patients, including those in hospital waiting to transfer to us. A day or two, yes, but for a matter of weeks, we can’t provide long-term care. That’s the reality of how tertiary care works. I would rather it didn’t. 

The doctor confirmed that “the situation is that if he’s transferred, he’d be likely to die in the ambulance. If he stays with us, he’d have a managed death and we’d be able to manage that in a dignified and peaceful way”. There was some commotion at this point as P’s father, seated in court, loudly repeated the doctor’s phrase “a managed death”, with apparent disbelief and evident distress.  “I understand”, said the judge, “this is very difficult to listen to”. 

Cross-examination by Counsel for the Official Solicitor

In line with her previously stated concern with “how best to achieve a good death for P and the three people dearest to him”, Katie Gollop QC, acting for P via the Official Solicitor, focussed her questions around end-of-life treatment.

Would all three family members be able to be there at the bedside?  “We will do our very best to make sure they can all be there.” 

If the medication in the end-of-life care plan were implemented, is it right that P would suffer no pain and no distress?  “As far as we could possibly achieve it.”

Would the end-of-life medication hasten death?  “Giving palliation and sedation carefully titrated does not hasten death: it simply relieves symptoms.  That’s why we use IV  for titration. With subcutaneous administration, there is more fluctuation, but with constant delivery via IV, it’s possible to deliver the lowest possible doses for symptom control.  It does not hasten death.  But overall, in moving to an end-of-life care plan and stopping treatment, he could die within a couple of hours, and it might seem that way.  But it’s really about allowing the natural thing to happen.”

Counsel asked what the difference would be between end-of-life care at the specialist Unit and end-of-life care at the referring hospital to which P would need to be returned in the event that the court found it in P’s best interests to have continuing life-sustaining treatments.  The doctor said she thought it “extremely unlikely” that the referring hospital would be able to deliver IV medications: “It’s not part of standard care to use the IV pathway – which is why the Royal College of Physician Guidance includes administration via both the subcutaneous and the IV routes.  I can’t say precisely what the palliative care team at [referring hospital] would do, but I do know that most palliative care teams use the subcutaneous route, not IV.”

Counsel also asked why the doctor had said there was more chance than not that P would die in the ambulance during transfer: “Given what happens when we just turn him on the ward, yes, on the balance of probabilities it’s more likely than not that he’d die in the ambulance or shortly afterwards”. 

The judge asked: “If I make the declarations sought by the Trust, that would lead to withdrawal of current treatment and an increase in palliative treatment, and you said that could lead to P dying quite quickly. Would that be something you’d give the family 24 hours to come to terms with?”  “Absolutely,” said the doctor.  “It’s not something we’d rush to do immediately. Apart from anything else, we’d want to be sure myself or [senior consultant] were on the ward to manage it. These are consultant-supervised programmes. It wouldn’t be a sudden thing.”

The court broke for lunch at this point.

2. Evidence from Dr Chris Danbury

Dr Chris Danbury is a Consultant in Intensive Care Medicine and was the expert chosen by P’s parents, although in the event (in large part due to legal aid funding difficulties) he was actually instructed by the Official Solicitor, and she took him through evidence in chief.

Katie Gollop QC established that Dr Danbury had been to see P and spent about an hour with him – and about four hours in the Unit in total, looking at test results and CT scans.  The first CT scan showed “chronic lung injury” which was consistent with “chronic aspiration over time” (i.e., from before P’s cardiac arrest).  The second CT scan was “a bit worse”. The lung problems “will not resolve with time. He has a progressive lung problem.  The aspiration is ongoing. The tracheostomy he’s got will not prevent him from micro-aspiration and his stomach will continue to produce gastric juices, several hundred millilitres of fluid a day, and some of that will go into his lungs and produce further lung damage”. 

Gollop: If treatment were to continue, what is P’s estimated life-expectancy?

Danbury:  With oxygen, hydration and suctioning, weeks at most.  Without, days at most.

Gollop: Which treatment is the most important in prolonging his life?

Danbury:  Oxygen. He’s on 60% oxygen for the majority of the time, and despite that his saturation is in the mid-90s.  The fact he’s requiring this amount of supplemental oxygen means that if it was withdrawn he’d become hypoxic very quickly.

Gollop:  Within hours? Or days?

Danbury:  Within minutes to hours.  His lungs are not working well at all.

Dr Danbury confirmed that subcutaneous delivery of midazolam and morphine were “standard practice” and was asked if IV administration would result in a “more dignified death”.  Like the treating doctor, he said that it would, because it is easier to give titrated amounts.  Midazolam, he said, “is a good anxiolytic” (i.e. a medication that reduces anxiety) and means that (if P experiences anything at all) he’ll “be less anxious during the process of dying”.  And morphine he saw as essential for pain-relief, adding that patients who’d survived ICU had reported to him that being suctioned down a tracheostomy (as is happening to P) is “akin to having a red-hot poker pushed down your throat”. 

Like the treating doctor he said that the level of risk if P is moved to another hospital or hospice is high, and he agreed that “on the balance of probabilities he would die in the ambulance or shortly thereafter”. 

Dr Danbury had sent an email to the Official Solicitor over the weekend in which he’d said, perhaps surprisingly: “…if a hospice or another acute hospital is identified, is willing to accept P and is willing to continue O2 [oxygen], suctioning and hydration whilst delivering palliative care to ensure P remains comfortable and pain free [the OS’s suggested “third way” course of action in her Position Statement], then I could support that approach.  The caveat about the risks of transfer would still remain.” (This was read out in court.)

Questioned about this, he reiterated that finding anywhere to accept P was “extremely unlikely”, and that the risk of P dying during or soon after transfer remained.  His reason for being willing to support this position was because “I’ve noted the relationship between the treating team and family, and the family may find the process of his dying better somewhere else than on the Unit where he is now”.   

In response to a follow-up question from the barrister for the Trust, Dr Danbury said the benefit to P of a transfer was potentially “how he’s remembered after he’s died… from a holistic perspective, rather than a purely medical perspective”. 

3.  Evidence from Dr Andrew Hanrahan

Dr Andrew Hanrahan was instructed by P’s parents. He’d prepared a 22-page report dated 8th March 2022.  

Sophy Miles asked him questions about that report, especially focusing on divergences between what the family experience, and say they want to happen, and the findings and recommendations in his report.

Miles:  He’d been started on a pain relief programme when you saw him?

Hanrahan: Yes.

Miles: With what effect on his awareness?

Hanrahan:  With the doses given, no more than a minimal effect on his awareness – it’s already profoundly limited.

Miles: The family do feel he’s able to respond to them. Could that be right?

Hanrahan: Sadly not, actually. As much empathy as I have with the social transactions that family feel they have with their loved one, I do not think that what the family are seeing is awareness.  (He went on to describe the myoclonic jerking, blinking and other involuntary movements characteristic of vegetative patients.)

Miles: Your recommendation is the need for a terminal care plan You say that will help the family and those caring for P to interact together and provide care for the person who matters most, who is P.  I’m just going to ask you whether you think that there could be a similar benefit to continuing the treatment that’s already being provided, allowing the family more time in which to have those interactions?

Hanrahan: Okay, uhm, I’ll answer that question…. It’s my opinion that P is not just in a severe condition, but in a profound prolonged disorder of consciousness, and it’s my opinion that no amount of time, with or without sedation, will change the diagnosis for P.  He is in a vegetative state, with a very few behaviours not inconsistent with MCS [Minimally Conscious State] Minus.  There is a possibility that this minimal awareness is engendering a physiological distress response – when he’s moved, turned, changed, when his personal hygiene is attended to.  The distress might be more than physiological and be experiential.  This risk of suffering is not justifiable in my opinion, when balanced against the family having more time with him. There is no professional view that any more time will change P’s underlying neurological status.  Even if it did, any further awareness will engender further experiential suffering.

He went on to say that he would anticipate good quality interactions between the family and P in the context of a terminal care plan.  “When I saw him, P was dying…” he said.   His concern was with “managing the dying process as well as possible”. 

The parents were passing notes to their counsel with questions for Dr Hanrahan   How was it possible that the scan of P’s brain showed so much atrophy on the first scan, so soon after his cardiac arrest.  (Dr Hanrahan conjectured that the brain injury had “a long history” leading up to P’s cardiac arrest and that it was related to the “metabolic chaos” caused by his untreated diabetes). Are the signs of distress different for vegetative and minimally conscious patients? (They’re exactly the same, and “future iterations of diagnostic terminology may do away with this distinction entirely”.)  How is it possible to distinguish between action myoclonus (involuntary muscular jerking and twitching) and distress? (They’re quite different phenomena: possible distress is evidenced by hypervigilance, eyes opening wider, increased respiratory rate and increased heart rate).  

P’s partner picked up on this last question and Dr Hanrahan expanded by saying that “In P we have heart rate increases, a whole picture of facial distress, autonomic features like pupil dilation, sweating ….”.   He acknowledged that this may be “a physical phenomenon” but “we are allowing for the humane possibility that it is experiential and therefore something that we ought to treat”.

The parents asked, through counsel, whether the action myoclonus was  “a sign of P trying to emerge” – and P’s father wanted Dr Hanrahan to know that “P opens his mouth on request”.  “No,” said Dr Hanrahan, “myoclonus is a subcortical involuntary motor disorder, not a sign of his trying to emerge”.  On the matter of command following, he said: “There are so many facial movements, it’s very difficult to know what’s a response or not.  To say he’s command-following invokes a much higher level of consciousness than we can support, given the diagnosis”. 

4. Evidence from P’s mother

Asked by her own counsel what she wanted the court to do, she said: 

“I want doctors to give P the opportunity to get a PEG or TPN and an X-ray to verify the current situation in his gastro-intestinal tract, and to find out for certain the situation with his lungs, and be given a further opportunity to recover. These tests are important for P’s survival.  I am in no way in agreement with the palliative care pathway.  He was far more responsive before the administration of midazolam. His state of consciousness was ill-affected. Now he’s asleep the majority of the time.”

Asked what P himself would want: “He would want to live. He would want the opportunity to recover, and be supported by his loved ones”.

Asked about further investigations, she said the family was trying to “gain help from someone in London, a very eminent person in gastroenterology”.  An appointment had been made for 8.45am on Wednesday.  “I don’t wish to divulge their name. Every other door to create the chance of survival for P has been closed, and I don’t want to expose this individual to that”. 

Asked about the possibility of P being moved elsewhere she said she had “no issues with the nurses” at the current Unit.  The difficulties had been with two doctors – including the one who’d given evidence earlier (“evidently we’ve had our differences of opinion, but it’s not fair to colour the whole situation with that”).   Her “main concern” was now “to get P to somewhere safe where he can have the possibility of recovery. If there’s a chance that it could be elsewhere, then I’d advocate for that – and the rest of the family do too.”

Counsel asked for her view of the evidence provided by the experts today. It was clear that she did not accept their evidence that P was dying: “They’ve seen P in a sedated state. They’re professing to give a proper assessment, which I find questionable given the circumstances.”

Cross-examination by counsel for the Trust

Caroline Hallissey, counsel for the Trust, asked P’s mother about P’s condition before his cardiac arrest, saying that the medical records report he was “very malnourished” when admitted to hospital after his cardiac arrest, with “extensive muscle wastage of arms and legs”.  Despite his condition, he had not gone to see his GP.

P’s mother said that “he didn’t discuss it with me” and that although “I had my concerns because I knew he was losing weight”, she believed “it was his own decision” whether or not to seek medical attention.

“And the events leading up to the cardiac arrest, you’re quoted as saying he was an adult and you respected his sovereign right not to go to hospital?”  asked Counsel.  “Yes, indeed” said P’s mother.  

The judge asked why P’s mother didn’t want P to have midazolam and morphine when “doctors say that will help P if he’s suffering pain”. She said: “As it stands, the whole introduction of the midazolam has effectively put him on a palliative care pathway.  I was loath for midazolam and morphine to be introduced because I knew from what [husband] had told me that those were the very drugs that would be used on a palliative pathway. I didn’t wish for his opportunity to have a chance to recover to be usurped by that pathway.”

Cross-examination by counsel for P via the Official Solicitor

Katie Gollop QC provided P’s mother with the opportunity to challenge the argument (in the Trust’s position statement) that because P refused or avoided medical treatment when he was diagnosed with diabetes in 2020, this meant he wouldn’t want treatment now.  “No,” said P’s mother, “that is not the case at all. In terms of emergency treatment, when it’s a matter of life or death, if an individual would wish to live, and P would, and does, then he would not be opposed to treatment”. 

The judge pointed out that P had accepted medical treatment when he was a teenager for possible viral meningitis.

His mother added that he had an “inclination to do independent research”. He was “a very intelligent young man, who wanted a wholesome and good life with his partner. He wanted children and a fulfilled existence”.

Re-examination

Counsel for the parents, Sophy Miles, picked up on this last point and asked for more information about P.  He was “self-motivated, gregarious, solved complex computer problems, was proficient and a multi-tasker”, said his mother.  His decision not to seek medical treatment back in March 2020 when diagnosed with diabetes was because he had “self-motivated will, he wanted to be independent and make his own decisions for himself”.

She ended her evidence by asking for P to receive nutrition if it was possible for him to do so safely “as soon as possible”.  She reiterated that she wanted someone else to assess him, and to look in particular at the problems with his lungs and stomach to assess the “current” situation (“not depend on that which has gone before”).  What she wants more than anything for her son is “the opportunity to survive as long as humanely possible and for his life not to be taken from him, not to be expunged”.

She felt there had been “undue bias from the clinicians and second opinions” about which she felt “deep concern”.  She said “all the doors have been closed. It’s punitive for P’s future”.  She was very disappointed that the referring hospital would not readily re-admit and treat P, saying that the doctor there with whom the Unit had consulted was “thwarting my endeavour to get P away from the remit of the [Unit] so he can have a chance”.

5. Evidence from P’s father

P’s father spoke at length about his son, and was apparently the family member spending the most time at his bedside (“since 15th February, I’ve been there 580 hours”). 

What came across most powerfully was his pride in his son, who’d “achieved where people said he couldn’t”.  He described his son’s  achievements at work (“he types like a machine gun and his grammar is perfect”) and how he “trains men to do his job and they’re leaving because they can’t do it”.  He’s also “a world-class champion poker player”.  

He gave evidence of how he knew that his son was conscious and responding to him (spitting up saliva when he asks him to, looking at him  – and away from him – when directed.) He described an occasion when the oxygen became detached and his son “must have been breathing on his own” as evidence that the doctors were wrong about his lungs. 

He described his son as a “miracle” and the fact that he’s still alive as “evidence that he wants to live”.  “He’s my only son,” he said, “and I love him dearly.  He’s a sovereign soul and I see his soul in him.  I tell him, ‘Never give up! Never give in! Never surrender!’”. 

He fears the doctors will “basically kill my son” and says “there’s a duty they have to save life”. 

6. Evidence from P’s partner

Like his parents, P’s partner appeared not to have accepted at all the medical view that P is dying. Like them, she was focussed on helping him to get better.  She’s not convinced by the expert reports, believing that they are all “starting from the same background, the same records, the same scans”.  They make “assumptions”: “you hear the words ‘hypoxic brain injury’ and you hear the amount of time he was without a heartbeat, and all three clinicians assume on first impressions that he’s going to be a certain way”.  Having been present for one of the three experts’ physical examinations of P, she clearly considered it cursory.

P’s partner asked the court to “make the most optimal decision to ensure that P survives”.  In her view, that would not happen in the Unit where he is currently cared for.

“But if he is moved in an ambulance, and they do take that risk, there is some chance of survival.  Knowing what I know about P, and how much he would want to live, that’s what, ultimately, I think would be in his best interests.”

Final Submissions

On behalf of P (via the Official Solicitor), Katie Gollop QC paid tribute to P’s family, saying that “if love and faith were enough, then P would be much better than he is now. He is deeply blessed in his parents and in his choice of partner”.

As she had said at the beginning of the hearing, she commented that the available options are so tightly circumscribed, that not clear that there is a real choice to be made.  With treatment, P might have two or three weeks of life-expectancy, but the Unit he’s currently in is not commissioned to provide P with this treatment, so if the Court decides that ongoing treating is in his best interests,  then he’ll be transferred back to the referring hospital.  But transfer is not safe. P is in a fragile physical condition and he has a risk of at least 50%, perhaps higher, of dying in the ambulance.  Finally, the journey to the referring hospital would serve no purpose since, like the Unit, they do not consider ongoing treatment to be in P’s best interests.  

Katie Gollop QC said that were it not for the unfortunate  lack of trust and confidence in the treating doctors, the current Unit would clearly be the best place for P.  She’s concerned that (despite the court order at the previous hearing), P is not receiving recommended pain relief and there is no guarantee he is not in pain. It isn’t clear, she said,  that (apart from advocating for appropriate pain relief) the Official Solicitor has a significant role to play. She is reassured to hear that all efforts will be made to allow the family to be with him at the end. 

For the parents, Sophy Miles said it was common ground that nutrition was not before the court as an available option but that the judge could decide that hydration and respiratory support were in P’s best interests – in which case the referring hospital clinicians would have to consider it.  She highlighted Dr Danbury’s observation that best interests is wider than the medical and includes how P is remembered. Having heard from all P’s family, she said it is clear that P was a young man who wanted to live and was determined to solve problems his way.  “What shines through is that P would take into account the views of his family – his parents and his partner.”

For the Trust, Caroline Hallissey described the case as a “true tragedy” and said that the Trust maintained the same position as that entered in the Position Statement. 

The judge referred to the case as “heart-rending” and said she would deliver an oral judgment the following day. 

Judgment

The oral judgment was handed down at 2pm on 15th March 2022.  

Mrs Justice Judd accepted the evidence that P was dying.  It was, she said, “abundantly clear that all the doctors are in agreement” and she would be “remiss” not to state “clearly and urgently” that a terminal care plan should be in place. 

The judge recognised that P’s mother is strongly opposed to the end-of-life plan and does not believe that the treating team is acting in P’s best interests.  P’s mother, said the judge, believes that the treating team are punitive, that they have lied about P’s condition, that they wish to “euthanise” P and have vested interests in him dying. Both parents believe that morphine and midazolam are harming P and shortening his life.  They want P to be given a chance to recover. So, too, does P’s partner:

“The family are close-knit and working together to support P as best they can.  Their love for P was plain to see – as is their overwhelming grief. They are simply not able to bring themselves to face the overwhelming medical evidence or assess it in a rational way. The family are entirely united. They hold the hope and belief that P can recover. They ask for further investigations.“  (Judge)

The judge referenced the relevant law, which will be in the published version of the judgment: notably, section 4 of the Mental Capacity Act 2005, Aintree, and N v ACCG [2017] UKSC 22.

She concluded that there was no doubt that P lacks capacity to make his own decision about medical treatment, hence the court must make a decision in his best interests, given the available options.  The medical evidence was unanimous.  If treatment continues, P will die within weeks.  If he receives palliative care only, he will die within hours or days.  The family do not accept this – their views are “not based on a rational assessment of what they are being told” and “so strong are the family’s reactions, they suggest that clinicians are telling lies and have malign motives”.  

The judge accepted that P would want to live and would have wanted doctors – if they could – to make him better, and to give him a chance of life.  But that is not possible, and it is “hard to see why he would accept futile treatment”.  In any case, if he had capacity, he could not insist on futile treatment, and neither can the court on his behalf.

Palliative care medication will guarantee that he is not distressed after treatment withdrawal.  And although there might be an advantage in transferring him to another hospital for end-of-life care (given that the relationship between the treating team and the family has broken down), he might die in transit or shortly afterwards, with less good care than he would receive at his current Unit.

Granting the declaration sought, the judge acknowledged that the family “will be even more devastated by this decision” and extended her “profound sympathy” for the loss of P who she knew to be “much loved, and treasured by them all”. 

Reflections

We all inevitably view hearings like these through the prism of our own experience and our own values.

For some people, I know this this will seem like another account of treatment-rationing in the NHS, or of doctors prematurely “giving up” on their patient and effectively “killing” people with decisions (in this case, judicially endorsed) to permit the withdrawal of treatments without which it is known the person cannot survive: a form of euthanasia.

For me, what the story behind this court case reveals is not under-treatment, but over-treatment at the end of life.  

In the face of what was clearly an overwhelming clinical consensus that P was dying, treatment continued not just in the run up to the first court hearing, but then for a further two and a half weeks between the first and second hearings. The effect of this was to prolong P’s dying phase, while failing adequately to manage (because of family objections to morphine and midazolam) the pain and distress he may have been experiencing.

The ‘therapeutic jurisprudence’ of the court offered this family the opportunity for their concerns to be heard, and to ensure that every possible avenue for rehabilitation and recovery had been explored.  But my impression was that the family’s views remained entrenched – despite instructing their own independent experts, and despite these experts coming to the same conclusions as those of the treating clinicians (and the Trusts’ experts). 

In the end, it seemed to me that the main achievement of the hearing was to offer protection for the treating clinicians who were empowered by the court to carry out what, in fact, had been – from the outset – the only realistic course of action.  

The same was true of the case in the Family Division I blogged about recently, in which clinicians sought a declaration that a patient was dead (and that it was therefore lawful to withdraw treatment): she had been provided with ventilation and clinically assisted nutrition and hydration for six days after death, also because of family opposition to treatment withdrawal.

I regularly hear from doctors who continue to provide “futile” and “burdensome” treatments to dying patients because families “insist” on them. While families talk of “not giving up” on their loved ones, and worry that treatment withdrawal is related to NHS “rationing”, health care professionals tell me about the moral distress they experience at continuing to administer treatments they consider entirely clinically inappropriate.

There is a wider cultural issue here about the difficulty we have, as a society, in recognising and  accepting death.  

This tragic case highlights some of the challenges we need to confront in palliative and end-of-life care.

Celia Kitzinger is co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project, and co-director (with Jenny Kitzinger) of the Coma and Disorders of Consciousness Research Centre at Cardiff University.  She is also a co-author of the Report of the Lancet Commission on the Value of Death. She tweets @KitzingerCelia

[1] We are not permitted to audio- or video-record court hearings. Direct quotations of what was said during the course of the hearing are as accurate as possible, based on my contemporaneous touch-typed notes but are unlikely to be entirely verbatim.

[2] In the event, Dr Andrew Hanrahan was instructed by P’s parents, and Dr Chris Danbury by the Official Solicitor.  This was in large part because of legal aid funding difficulties.

Photo by Pawel Czerwinski on Unsplash

Capacity to engage in sex: Putting the MCA’s foundational values to protect and empower to the test

By Samantha Williamson, 18th March 2022

Most of us couldn’t begin to imagine being told (as adults) that we are prohibited from spending private time with our chosen partner – and that we cannot be allowed to have sex with them.

That’s been the case for 19-year-old T and her 25-year-old boyfriend since 19th November 2021.  

For four months now, there’s been a court order in place restricting sexual contact between T and her boyfriend.

The court has determined, on an interim basis, that T (who has a learning disability) lacks capacity to engage in sexual relations (and also lacks capacity to make decisions about contraception, internet use, and social media). Support and education for T is ongoing to maximise her capacity in these areas. 

The local authority had made an application to adjourn a hearing before a Tier 2 judge in mid-February 2022 and the judge vacated the hearing but considered the interim declarations required oversight by a High Court Judge.  And so, the case came before Roberts J on 11 March 2022.

I was observing this hearing as a mature law student undergoing a career change and wishing to translate academic exposure to the Court of Protection to real life practical experience. 

The hearing

The case (COP 13843692 Re T) was heard at 10.30am on Friday 11th March 2022, before Mrs Justice Roberts, sitting at the Royal Courts of Justice as a Tier 3 judge in the Court of Protection.  The hearing was held over MS Teams.

The applicant, a county council, was represented by Mr Pravid Fernando[1]. 

The first respondent was T, represented by Mr Rhys Hadden (instructed by her litigation friend, the Official Solicitor). Instead of a position statement, Mr Hadden had prepared a draft order to assist the court.  

Second respondent was the county council Partnership NHS Trust, represented by Mr Jeremy Roussak.

T was not in attendance but her father was –  to the pleasure of the Judge who observed “I’m delighted you’re able to join us today.”

Roberts J made very clear at the outset that she had read all the bundle, was familiar with the case history, and had received and read all the communications that had been involved. This instilled confidence both in me as an observer and, hopefully, in T’s father.

The judge acknowledged the presence of observers by name – I admit it felt a little exposing but I did feel welcome.  She raised the matter of the transparency orders and the importance of all relevant parties’ privacy. A transparency order was duly sent to me and I confirmed receipt and understanding. The judge also asked for an introductory summary from counsel for the applicant to lay out the situation for the benefit of all the attendees.

Background

T is 19 years old with mild learning disabilities. She lives with her adopted parents and her natural siblings.

Mrs Justice Roberts brought some colour and humanity to T as a person by evidencing her pleasure at hearing that T is “living a full life”, is a keen horse rider and enjoys working at the local stables and participating in the local theatre group. This served as a valuable reminder that all these hearings involve life-changing decisions for a real individual, not just legal shenanigans. 

T is eligible for care under the Care Act 2014 and has an Educational Care Plan in place. 

She has expressed wishes to spend time alone with her boyfriend, M,  at his flat and maybe live with him. 

According to the applicant local authority, T “has historically presented as naïve and vulnerable with regards to seeking relationships such as posting adverts on Facebook for a boyfriend with no criteria other than availability. Further, there have also been concerning images shared with her over the internet. Her mother considers that she is very vulnerable in the area of internet usage.”

All parties agreed with the applicant’s request for a continuation of both the interim declarations of T’s lack of capacity in the relevant areas, and the order restricting her contact with M. 

All parties also agreed that further educational work is needed before a reassessment of T’s capacity for sex. 

The approved order made by Roberts J declared that the Court is satisfied for the purposes of s.48 of the Mental Capacity Act 2005 (i.e. on an interim basis) that there is reason to believe that T lacks capacity to engage in sexual relations (as well as to make decisions re litigation of proceedings, internet use and contraception), and that sexual contact with M can be lawfully restricted as per the existing plan.  

Directions were also made that the other local authority (covering the area where T’s boyfriend, M, lives) must serve M’s completed COP5 and may disclose information related to T’s relationship with him so they can help M with easy read resources.

Observations:

1) Invoking the Supreme Court ruling in Re: JB (A Local Authority v JB, [2021] UKSC 52)

The judge referred to the case of Re: JB (“a case very well known to me”). 

This is a landmark case in the Supreme Court in which the judgment, handed down by Lord Stephens in November 2021, clarified what should be considered as the relevant information that P must be able to understand, retain, use and weigh, as  per s3(1)of the MCA, when making a decision to engage in sexual relations. 

It stated that not only must someone be able to consent to sex, but that they must also understand that the other person must be able to, and does in fact,  consent before and during the course of sexual activity. It reflects that sex is not just something done to P but also that P can be a desiring and initiating agent, with ‘engage’ being the operative word to reflect the mutual nature of the act:

“[F]ormulating “the matter” as engaging in, rather than consenting to, sexual relations better captures the nature of the issues […] the terminology of a capacity to decide to “engage in” sexual relations embraces both (i) P’s capacity to consent to sexual relations initiated by the other party and (ii) P’s capacity to understand that, in relation to sexual relations initiated by P, the other party must be able to consent to sexual relations and must in fact be consenting, and consenting throughout, to the sexual relations” (Lord Stephens, para.90,  [2021] UKSC 52)

Previous Open Justice Court of Protection Project blogs here and here and wide academic commentary such as from 39 Essex Chambers have offered insightful reflections on the many broad potential implications of this case. For brevity, I shall refrain from further analysis.

Roberts J very firmly and clearly raised the fact that T’s capacity assessment was undertaken in mid 2021, before the Supreme Court judgment in JB where, as Roberts J put it, “the entire test of ability to consent to sexual relations was recast, in line with what the law ought to be”. She highlighted that in view of this, the capacity assessments for T must be updated – but noted that this had been planned anyway, upon completion of the program of education aiming to support T to make her own informed choices.

It seems that consent in the case of this hearing is more to do with whether T understands consent –  that she may withhold her consent, that she understands the consequences (pregnancy, disease etc) if she does consent –  rather than that she should understand that M must have ability to consent (although clearly now that is required too).

It is the protection element of the MCA that is at work here -to ensure that T is not being subject to, or vulnerable to, what would amount to sexual assault. (This might be particularly so in light of comments reflecting concern about her use of the internet.)

Roberts J’s emphatic reminder of the need for capacity reassessment in light of JB is perhaps rather driven by Lord Stephen’s assertion that:

“A general and non-specific basis is not the only appropriate formulation in respect of sexual relations as even in that context, “the matter” can be person-specific …, for instance… in the case of sexual relations between two individuals who are mutually attracted to one another but who both have impairments of the functioning of their minds.” (para. 71, [2021] UKSC 52)

This validation of person-specific decision-making capacity re sex (rather than issue-specific) could be important for T, given that as Lord Stephens explained, “it might be possible to help P to understand the response of one potential sexual partner in circumstances where he will remain unable to understand the diverse responses of many hypothetical sexual partners.” (para. 72, [2021] UKSC 52)

As noted above, the applicant observed that T has been using Facebook in a manner considered naïve and concerning, Admittedly, such indiscriminate invitation by a vulnerable person could well lead to harmful consequences. 

But with regard to her relationship with M, the Position Statement explains that the second respondent has stated that there is no evidence that he has behaved inappropriately towards T. He apparently had exhibited what might be seen to be “controlling behaviour” such as repeatedly asking T to move in with him.

Some might consider that to be normal enthusiasm in the context of young, impatient love rather than controlling or abusive behaviour. I don’t profess to have all the information here, merely to wonder about the evidence to support the restriction of contact. And perhaps that was the point of some of the directions sought relating to the other county council – to better understand M (and his capacity to consent)  and the nature of his relationship with, and intentions towards, T.

It is pure speculation, but I could envision the possibility, particularly following the program of education, that further assessments might conclude T continues to lack capacity to conduct proceedings, make decisions about contraception and make decisions about engaging in sexual relations and contraception in general. But, that she has capacity to make decisions about engaging in sexual relations and contraception specifically with M. (Note it was a conscious decision to write ‘has capacity’ rather than ‘regains capacity’ as it is not evident that a person-specific decision assessment was made in the last assessment. Indeed, presumably as it was conducted pre- JB, it wasn’t.)

2) Sexual contact plan  – ‘draconian’?

Roberts J took great pains to explain to observers in particular that the ‘sexual contact plan’ in place was not at all the “draconian” measure that it might sound, but rather a part of normal parental measures to ensure T could get to a position where she could make her choices, but in a safe fashion.

Given the declaration that it is “in her best interests for her contact with M to be restricted with a view to preventing her from engaging in sexual relations in accordance with” that plan, I did wonder how that looks in real life? Indeed, brief reference was made to the fact that it was on occasion difficult to manage. Does this mean she can’t see him at all? Only in public? Only if chaperoned? If they start to become intimate, does this mean physical restraint is required/permitted? No doubt this is all outlined in said plan but it does leave an observer thinking about the practicalities;:how difficult it must be for T (and M) but also for the parents and local authorities with a duty of care, who need to ensure their infringement of her rights is lawful. 

I did think it might also have been useful for counsel to have expanded a bit more on the specific practicable steps being taken (as required by s1(3) of the MCA) to help T to gain capacity to engage in sexual relations before the next capacity assessment, i.e. to explain the education plan underway and what it is aiming to achieve. This seems to be a key aspect to the continuing proceedings and indeed, the reason that the declarations sought continue to be ‘interim’. However, I recognise that all the parties had access to this information in the bundle and that would have been purely for the benefit of observers.

3) P’s voice in the hearing

T was represented, and all seemed to be in agreement of a non-contentious order. 

But I didn’t hear anything about  T’s opinion of the order (and existing interim declarations) or how she felt about the restriction on sexual contact (per s6(a) MCA). 

This is perhaps another reminder that best interest representations by the Official Solicitor and P’s wishes and beliefs are not necessarily aligned. (See Alex Ruck Keene et al’s Litigation Friends or Foes?  for helpful discussion of this topic.)

I should add here that, upon receipt of the Position Statement and order, I learned a) that T had been objecting to the plan but subsequently agreed it can stay in place; and b) that the directions included specific provision for T’s solicitor to file a statement of her wishes and feelings. 

5) M – the boyfriend

We learned that M has ADHD and very little ability to read or write but has no formal support from statutory services. I did wonder why there wasn’t more discussion of him given a) the order directly impacts on him; and   b) it is apparently at his request that T wants to live with him;  and c) his capacity to consent to sexual relations will also be required and there seemed to be some suggestion that this also may be in question and that he requires some support.  

The Position Statement did however make clear that M had indeed previously been invited to be party to proceedings and had declined, although he did wish to be an interested party. A direction was made that the relevant county council must file the COP5 form he has filled out. 

Final thoughts

I have been struck by how different it is reading judgments and legal commentary on cases (all neatly summarised and structured) compared with observing cases in person in the Court of Protection.

The judiciary, lawyers, and academics are well-versed in organised arguments, carefully placed references and nicely flowing streams of thought. For all of which I have been extremely grateful throughout my study and personal reading. 

The reality of a hearing for an observer though, much like the real-life situation it represents, is inevitably much messier. Skipping from legal argument, to medical evidence, to procedural issues and paperwork, it can be hard to keep up, especially without the benefit of the bundle and experience of the proceedings to date. 

I did notice, too, the extent to which the Court of Protection is more conciliatory and collaborative than, for example, the adversarial criminal court.

Despite this being only my second observation of this Court, I found the experience reasonably straightforward, and the language and processes used facilitated open justice. Having said that, I hadn’t been aware when I requested access that the issue being discussed was capacity for sex: if the fact that this was the issue to be addressed by the court had been included in the listings, I suspect there would have been a larger number of interested public observers, not all of whom would necessarily have been familiar with the legal backdrop to this case. I was very grateful that I was already aware of the legal arguments surrounding decision-making in this context and indeed of the JB history and judgment. Adding the issues to be addressed by the court to the listings would enable us to select hearings of particular interest, and to perhaps also to prepare in advance.

Given the general consensus amongst parties and the fact that interim orders had already been made, I didn’t get the full experience of the court engaged, live, in the delicate balancing act between the state’s duty of care to protect vulnerable persons and the preservation of autonomy. 

It  was readily accepted, on an interim basis, that the infringement of T’s Article 8 right to family and private life continues to be sufficiently necessary and proportionate to keep her safe .

From a legal perspective, Roberts J accepted the applicant’s proposal to allocate the next hearing back to a Tier 2 judge as this is “not a complex case”.  

From a personal perspective, however, I’m sure it must elicit some very complex and mixed emotions for both T (and M) and for her family.

Samantha Williamson is a mature law student with a particular interest in health-related law, inquests and inquiries. She has a recent MA in Medical Ethics and Law from King’s College London and is a trustee of the R&RA charity supporting older people in care. She tweets @samwilliamson03

[1] I am grateful to Pravin Fernando and the local authority for providing me with the Position Statement and approved order later in the day of the hearing.

Photo by Martynas Grigonis on Unsplash

 

Withdrawing treatment after brain-stem death: A case in the Family Division

By Celia Kitzinger, 16th March 2022

Note: This judgment is now published (click here).

Today I watched a hearing about whether or not a woman in her 40s is dead.

She’d been admitted to her local hospital Accident and Emergency department on 2nd March 2022 with a severe migraine-type headache and discharged.  

The following day (3rd March 2022)  she was again taken to hospital by ambulance and while waiting to be investigated she collapsed and became unresponsive, with seizure-like activity while being resuscitated.  She was intubated, taken to the ICU, and a CT scan revealed an aneurysmal subarachnoid haemorrhage and tonsillar herniation. There were, the clinical team decided, no neurosurgical options and clinical treatment was futile.  Her Glasgow Coma score remained at the lowest possible level (3).

She was declared dead at 11.45 on Thursday 10 March 2022, following brain stem death testing.  

But for the last six days (since she was declared dead on 10th March), health care professionals have continued to administer various medical treatments that would normally be described as “life-sustaining”, including mechanical ventilation and clinically assisted nutrition and hydration. 

The applicant Trust, North West Anglia NHS Foundation Trust (represented by Emma Sutton of Serjeants’ Inn Chambers), has asked the court for a declaration that the patient is dead, and that – as a consequence – doctors can withdraw mechanical ventilation and ancillary treatments.

The reason the doctors have continued to treat the patient, and the reason the Trust has applied to court, is that the family has opposed withdrawal of ventilation (and other treatments) and has asked for a private second opinion.  

The patient’s foster-mother participated in the hearing as a litigant in person.  She said:

“I’m very unhappy with the application to stop all treatment.  When I went into the hospital on Friday night, I realised that some of the machines were missing, so I felt that the withdrawal had already started in some form before the hearing had even started.  They’ve not allowed us a second opinion.  We can’t hardly visit her without someone pressurising us to switch everything off. It’s been terrible. This rush to switch everything off is awful. I disagree with it.”

A case in the Family Division

The hearing was heard online via MS Teams before Sir Jonathan Cohen on 16th March 2022 in the Family Division of the High Court[1].

Disputes about continuing or withdrawing serious medical treatment are very common in the Court of Protection – but those cases concern people who are still alive.

In this case, the person is dead  – according to the neurological criteria relating to irreversible cessation of brain stem function. (There’s an NHS page about brain death and its diagnosis here.)

The case was heard in the Family Division because it’s outside the jurisdiction of the Court of Protection to make a declaration that someone is (or is not) dead.

The Official Solicitor had been approached and declined to act as litigation friend given the content of the application.  There are no ‘best interests’ decisions to make about a dead person (although in fact I have watched a couple of hearings concerning people who have died after the Court of Protection hearings were instigated e.g. “Life sustaining treatment contrary to his best interests”).  Since the Official Solicitor declined to act in this case, the patient was unrepresented.

Defining death

The definition of “brain stem death” the Trust is using is drawn from clinical guidance – specifically,  the Code of Practice for the Diagnosis and Confirmation of Death produced by the Academy of Medical Royal Colleges in 2008.  (I’ll refer to this as the “Code of Practice” from now on). 

“Death entails the irreversible loss of those essential characteristics which are necessary to the existence of a living human person and, thus, the definition of death should be regarded as the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe. “(The Code of Practice)

This neurological definition of death has been accepted and endorsed by the courts from at least 1992 onwards (Airedale NHS v Bland [1993] AC 789).  

“Recent developments in medical science have fundamentally affected these previous certainties. In medicine, the cessation of breathing or of heartbeat is no longer death. By the use of a ventilator, lungs which in the unaided course of nature would have stopped breathing can be made to breathe, thereby sustaining the heartbeat. Those, like Anthony Bland, who would previously have died through inability to swallow food can be kept alive by artificial feeding. This has led the medical profession to redefine death in terms of brain stem death, i.e., the death of that part of the brain without which the body cannot function at all without assistance. In some cases, it is now apparently possible, with the use of the ventilator, to sustain a beating heart even though the brain stem, and therefore in medical terms the patient, is dead; “the ventilated corpse”.” (Lord Browne-Wilkinson in Bland).

The patient in the case I watched today was said to meet the criteria for brain stem death.

Her breathing and her heartbeat are maintained by the ventilator but neurological testing by two consultants (and two external opinions commissioned by the Trust) have established brain stem death, as defined by the Code of Practice (2008).

The court approached this whole matter as a technical or procedural application.  The judge interrogated the medical evidence to see if the guidance in the Code of Practice had been implemented correctly. 

There is a significant academic literature on the history, cross-cultural applicability and ethics of ‘brain stem death’ as a socially constructed concept, and a history of court cases – especially in the USA – challenging determination of death on the basis of neurological criteria.  For a review and defence of ‘brain death’, take a look at this article: Current controversies in brain death determination.  

The court in this case did not engage with the theoretical and ethical discussions relating to ‘brain stem death’ as a concept.  It  simply accepted the medical consensus for neurological death (as defined in England and Wales) and sought to establish that it applied to this patient.

This is the approach also used in previous court cases, most notably in the Court of Appeal decision of Re M (Declaration of Death of Child) [2020] EWCA Civ 164.

“as a matter of law, it is the case that brain stem death is established as the legal criteria in the United Kingdom by the House of Lords’ decision in Bland. It is not, therefore, open to this court to contemplate a different test.” (§91 Re M)

The Court of Appeal case also makes clear that (as the judge in the lower court also said)  “If a patient is brain stem dead, then there are no best interests to consider. Once those criteria are met the patient has irreversibly lost whatever one might define as life…” 

Sir Andrew McFarlane, who wrote the main judgment said (after quoting the judge in the lower court): “I agree. Once a court is satisfied on the balance of probabilities that, on the proper application of the 2008 Code ….  there has been brain stem death there is no basis for a best interests analysis, nor is one appropriate. The court is not saying that it is in the best interests for the child to die but, rather that the child is already dead. The appropriate declaration is that the patient died at a particular time and on a particular date without more.”

The hearing

Most of the hearing – which lasted for about three and a half hours – was spent gathering evidence from the treating Consultant in anaesthetics and intensive care as to the basis for the claim that the patient met the criteria for neurological death.  The purpose was to discover (in the judge’s words)  “whether the tests carried out in the hospital are so conclusive that there’s no possibility of anyone else coming to a different conclusion”. 

The Consultant looked exhausted.  We were told that he’d been up the whole of the previous night on duty – and he’d been due to be on night duty again tonight but had just managed (he told the court) to find someone else to take over the night shift.

Having been affirmed, and adopted his statement, he was asked by counsel for the Trust whether he’d seen the patient since writing his witness statement for the court on 15th March, and if so whether there had been any change.  He’d seen her this morning.  There was no change.  “She remains unconscious.”

Between them, the judge and counsel for the Trust questioned him about what, exactly, an “aneurysmal subarachnoid haemorrhage” and “tonsillar herniation” are.

The judge and counsel went through, in detail, how the brain stem testing was done (and by whom) to ensure it conformed with the Code of Practice.

It appeared that all the correct tests had been done according to the proper criteria. Every test was negative (i.e. the patient did not respond).  

Time of death was recorded, in accordance with the Code of Practice, after the first set of tests.  The tests were all then repeated – with the same outcome.

Counsel for the Trust asked: “When everything is negative, no further ancillary investigations are required. That’s the end of the line?”.  “Yes”, said the doctor, “I’m afraid so”.

Counsel: Are there any circumstances where a second opinion would be requested after two consultants have confirmed the legal time of death?

Doctor:  Not ever in my career. No.

Counsel: What would be the negative of allowing a second opinion?

Doctor:  As a professional, there is no further benefit.  It is not humane to continue the treatment of a person who is brain stem dead.

Judge:  What will happen to [the patient] if the ventilation and artificial feeding continue? Is there any prospect at all that she’d regain consciousness?

Doctor: No, My Lord.

Judge: Or be able to breathe?

Doctor: No, My Lord.

Judge: Or have any perception of the world around her?

Doctor: I’m afraid not, My Lord.

Judge: And what would happen to her organs, her heart, given time?

Doctor:  If we continue treatment?  It’s hard to say this, I’m- It’s beyond my-  I’ve never seen that before, to be honest.  After brain stem death, with time, there will be derangement of blood pressure control, derangement of endocrine systems, like the pancreas, all the systems and organs. And eventually her body will sadly die.

Counsel: You said earlier it was not humane to continue to provide treatment. Do you have ethical concerns with continuing?

Doctor: Yes, it’s not ethical to continue to ventilate a brain stem dead patient. It’s not ethical for the family as well.  And it’s not ethical for the staff.

The patient’s mother was offered the opportunity to ask questions of the doctor and asked who had treated the patient in Accident and Emergency.  She was obviously concerned that on the second occasion her daughter had waited a long time to be seen. “I was horrified they made her wait in the waiting area, because it was quite serious”.  

She talked about how sudden her daughter’s collapse had been “very sudden, very quick, she didn’t have any brain trouble before”, and what a shock it was to find that by the following day “all they were talking about was ‘we need to turn things off’ and I couldn’t think why they were wanting to turn the machines off so quickly”.

She wondered whether her daughter had some kind of infection (“very unlikely” said the doctor) and reported having been told that there were “several” bleeds on her daughter’s brain and wanted to know how many exactly.  (There were two, said the doctor, but “the devastating one is the  subarachnoid haemorrhage”).

“I’m just at a bit of a loss really, but the reason we asked for a second opinion was because we were not really trusting what they were saying to us. It seemed to keep changing. We did want to be there for the second test and then we just got a phone call saying they’d done it.  We did have conversations with the nurses, but all they did was keep telling me they needed to switch her off.  I went in unannounced because I didn’t want to be bombarded with messages about switching her off.  Why so much of a hurry?  We would like to spend time with her and pray.” (Mother)

At this point the court moved to a discussion of the time frame for treatment withdrawal and it became crystal clear that the issue was not whether that’s what would happen, but when.

Judge:  I understand you’d want to be with her before the machines are ‘switched off’, to use your term, and other people too.  Can you give us a picture of how many people and over what time?

Mother:  Over seven days it would be about seven to ten people.

Judge:  I want you to understand that the demands on an Intensive Care Unit are quite considerable.  Having large numbers of people there are not easy to accommodate.  That number of people might present a problem for the hospital, as might the period of a week, but I’ll let [the consultant] address that.

Doctor:  I am very concerned about the time frame. The main thing I wish to clarify is that it’s becoming really unprofessional where we continue ventilating someone who is declared brain stem dead.  From my perspective, a week is totally unacceptable – from my professional perspective.  I completely understand that many family members would like to come and see her, but I would ask for a shorter time, because I’m really concerned about this situation as a professional.

Judge: Ultimately it seems to me that it’s probably a decision for the clinical staff.  If your arm was twisted behind your back, if I can put it that way, what would you consider an acceptable period of time to allow the family to come and say goodbye?

Doctor: Twenty-four hours, My Lord.

Judge:  Once the machines are switched off, how long or slow would it be before death took pla- sorry, how can I put it? Before the breathing would completely pack up?

Doctor: It would be a matter of minutes, My Lord.

Judge: So bearing in mind where we are now, late afternoon on a Wednesday, would some stage on Friday be something you could professionally tolerate?  

Doctor: Yes, Friday can be acceptable.

Judge: I don’t really want to indulge in an auction on this, but that’s the doctor’s answer to the question you asked.

Mother: What happens?  Do they put her in a side room, or just take her straight to a coroner?  We would like time with her, even if they had taken her off the ventilator.

Doctor:  Normally we will keep a body for two hours after certification.  I hope that two hours is enough.

Judge: It seems to me this is something beyond my control.

Mother:  So Friday – what time on Friday?

Judge: That is a matter for you to discuss with the doctor. For my part, I would like to suggest to the doctor that perhaps it might be humane to say not before midday.  Would that be something the doctor could accept?

Doctor:  I can accept that, My Lord.

Judge: I recognise I’m stepping outside of my judicial role, but I think it’s important to see what I can effectively mediate.

After an agreement between the Trust and the mother that treatment withdrawal would take place on Friday not before midday, the judge gave an ex tempore (oral) judgment.  He summarised the medical evidence from the Trust. He referred to the Code of Practice for the Diagnosis and Confirmation of Death.  He didn’t read out, but said he would include in the written version of the judgment, paragraphs 28, 29 and 30 from the Court of Appeal decision of Re M (Declaration of Death of Child) [2020] EWCA Civ 164. 

The judge ran through the evidence that the patient was indeed brain stem dead: her pupils do not react to light; there is no eyelid movement when touch is applied to the cornea; no eye movement when ice-cold water is injected into her ears, no gag reflex, no cough reflex, and no response when pressure is placed on her cranial nerve.  When she was disconnected from the ventilator for 5 minutes, she did not breathe.

He concluded by saying he had no alternative but to conclude that death had been correctly diagnosed, in accordance with the Code of Practice.  It was, he said, “futile for the current treatment to continue” and he made the declarations requested by the Trust.

Celia Kitzinger is co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia

[1] I am grateful to Emma Sutton, counsel for the Trust,  for alerting me (and PA journalist Brian Farmer) to this hearing, and for reassuring us that it was in fact a ‘public’ hearing, despite having been listed as ‘in chambers’ (i.e. private) on the Royal Courts of Justice daily cause list.  Thank you also to Emma Sutton for her position statement which was very helpful in supporting my understanding of this case, and on which I have drawn in this blog post.

Photo by Milad Fakurian on Unsplash

Challenging behaviours? The importance of language

By Daniel Clark, 15th March 2022

On Monday 28th February 2022, at 10:30am, I observed a hearing (Case no. 1351116T Re: NC) before DJ Eldergill sitting at First Avenue House London.

In addition to the judge and the two barristers (counsel for the Local Authority, Michael Paget, of Cornerstone Barristers,  and counsel for NC via the Official Solicitor, Simon Maddison, of St John’s Buildings), NC’s social worker was also present.

I was the only public observer at this hearing, which was a bit daunting at first but I soon relaxed as a result of DJ Eldergill’s welcoming demeanour. 

This hearing was exclusively virtual, and held on MS Teams. I received the link 13 minutes before the hearing, and then received the parties’ Position Statements 10 minutes before. As they were both quite short, this gave me the opportunity to read through them, and they gave  me an insight into what was going to be discussed.  

When DJ Eldergill entered the hearing, he acknowledged my presence and asked if I had received the Position Statements. When I confirmed that I had, he then explained that he was sure I knew (but wanted to reiterate) that I could not record the hearing, and nor could I share the Position Statements or publish anything that could risk identifying NC. He checked I understood this, and then provided a brief overview of the background to the hearing. I was very grateful for this, and also felt that DJ Eldergill’s engagement with me as a public observer was exactly the way open justice should work. 

The hearing                                                               

NC is a 60-year-old gentleman living with schizophrenia and (according to the Position Statement of the Official Solicitor) alcohol-related brain damage. DJ Eldergill first visited him in 2019, when he was residing in a care home, and in a subsequent hearing it was decided  that it was in his best interests to move to a “reablement”[1] placement. 

Currently, NC lives in supported living. However, in the words of DJ Eldergill, the situation has “significantly deteriorated”. NC’s behaviour is inconsistent, and he is generally incontinent. He lives in soiled clothing, lies in soiled bedding, and urinates and defecates in his bedroom. 

It was the view of the Local Authority that NC would best be supported in residential care (the same home he resided at in 2019) but the Official Solicitor felt that this was not in his best interests at the moment. DJ Eldergill did note that when he’d previously lived at the home, NC “seemed to have incorporated some of the staff there into delusional beliefs…He seemed to be highly suspicious of staff there”, though it was clarified by counsel for the Local Authority  later in the hearing that NC now sees the benefit of having been there. 

Counsel for the Local Authority argued that the current placement is “sub-optimal”, and that NC’s current behaviour is “distressing” (to whom was not made clear). Even though residential care is the most restrictive option, the Local Authority position was that it is in NC’s best interests to move there. Counsel for the Local Authority also explained that there’s a time constraint, telling the Court that the placement as an option “runs out today”, and the Court would need to make a declaration today. No reason for the  need for such a rushed decision was provided, and neither Position Statement makes any reference to the time constraint. 

The position of the Official Solicitor was that residential care was too restrictive. As there is the possibility that moving to a residential placement could be a permanent move, counsel argued that it was in NC’s best interests to remain where he was, especially as he is only 60, so his age is not typical of a care home population.  Counsel stressed that, in his view,  the current placement is not sub-optimal, and that the provider had not actually said they cannot meet NC’s needs.

With regards to his continence, it was noted that issues with continence only arose when he moved to his current placement. The Official Solicitor felt that “[NC] ought to be given more time to settle in”(he had only lived in the supported living placement since December 2021, as his previous supported living placement was closed for refurbishment). During this period of “settling in”, assessments from continence nurses and Community Mental Health Team (CMHT) would be sought. 

At this stage, DJ Eldergill agreed there was a need for further assessments. 

He recalled that  there had been a question about whether NC could have  bladder cancer,  after passing some blood in his urine. At the time, NC did not “cooperate” with medical investigations, and did not want to see a urologist. An order was not made to transfer NC to hospital for investigation under anaesthetic because professionals explained that blood in urine can sometimes have no known cause. However, DJ Eldergill did stress that incontinence can be caused by bladder cancer, and was a potential explanation for his current problems.

DJ Eldergill also remarked that he recalled a potential problem with NC’s thyroid, the symptoms of which might mirror a psychosis disorder. However, this had not been investigated, and DJ Eldergill felt that the matter should be followed-up by an endocrinologist. He also agreed that the CMHT should make an assessment.

The problem is that this “will take months rather than weeks”. However, “the problems are quite pressing…I think he’s struggling”. Therefore, DJ Eldergill explained that he was going to “side with the Local Authority…The situation has significantly deteriorated. It would be kinder for [NC] to move to [the care home]”. It’s relatively unusual for judges to make decisions that run counter to the position taken on P’s behalf by the Official Solicitor. I think this was possibly motivated by an acknowledged need for NC to receive immediate support, with what followed being a way of incorporating the position of the Official Solicitor into the move (and not ‘closing the door’ on the possibility of NC moving to a less restrictive placement in the future).

DJ Eldergill explained that he wanted to understand the cause of the problems that NC is facing, and how best to support him. Given that his “challenging behaviours” (I’ll return to that term later) could be either mental or physical in origin, the judge said that he wanted the problem with NC’s thyroid to be investigated. There was the possibility of a Section 49 order being made to the hospital, in order to ascertain how NC’s thyroid contributes to his physical and mental health. The judge  also asked for checks to be made with the GP again, about what can be done about the possibility that NC has cancer.

At this stage, as proceedings were concluding, DJ Eldergill asked NC’s social worker whether he had anything to add. The social worker explained that “attempts to regain independence” in a supported living placement haven’t worked: NC’s mental health has deteriorated. Whereas before he would previously “frequent” the toilet, he now “doesn’t make an effort” to go to the toilet. 

In concluding, DJ Eldergill directed that investigations be completed, so as best to understand what’s going on for NC before deciding what happens next. This received no objection from counsel, and a 2-hour hearing was arranged for 7th July 2022 (with a view that the hearing can be vacated if agreement on NC’s best interests is reached before then). 

The importance of language  

It was quite clear to me throughout this hearing that DJ Eldergill was motivated by compassion for NC, and a desire (as much as reasonably possible) to resolve the problems that NC faces. 

However, I was disappointed that the term ‘challenging behaviours’ was used at various times throughout the hearing, and was also used in the Position Statement of the Official Solicitor. 

The phrase ‘challenging behaviour’ has been widely critiqued. It emerged in the 1980s to “describe the often puzzling and difficult behaviours of people with significant intellectual disabilities. It replaced a whole host of terms such as…problem behaviour” (p4). In recent years, however, concerns have been raised that “the term has sometimes become used as if it was another diagnosis” (p4).

Another problematic element of the phrase ‘challenging behaviour’ is that what is challenging to one person may not be to another. One example of this is grinding of teeth. If you thought this was being done on purpose, you would think the person grinding their teeth was challenging you. However, when the teeth grinding is accepted as a character trait, the act becomes something that you personally find a challenge. In this way, the perception of the behaviour changes; it (and the person) is no longer challenging but the act is something that challenges you. 

There is a suggestion that the term ‘behaviour that challenges’ is preferable to “challenging behaviour” because it conveys the extent to which something is only challenging within a particular social context. One person may be challenged by teeth grinding whilst another doesn’t even notice. Allow me to illustrate the importance of social context in defining what is a ‘behaviour that challenges’. In response to an early draft of this blog, Celia Kitzinger pointed out that she was engaged in ‘behaviours that challenge’ when she held hands with her same-sex partner in public during the 1970s and 1980s. Holding hands is not, in-and-of-itself a ‘challenging’ act – until other people are introduced into the equation, people with specific views about how things ‘should be done’ and what is and isn’t acceptable public behaviour.

I find the phrase ‘behaviours that challenge’ useful because it leads to an immediate follow-up question: who is being challenged? Consider a gentleman who becomes highly distressed during personal care interventions (I have supported a number of people who experience this.) He is frequently incontinent but is unable to recognise a need to change his clothes. When staff attempt to assist him, he hits them. There is no question that this hitting is done ‘on purpose’, and is in service of a goal (stopping the intervention). So, if we refer to this as ‘challenging behaviour’, we stray very close to saying that this gentleman himself is a challenge; a problem to be solved.

However, this gentleman is expressing something: he is uncomfortable in the situation, and wants to be able to go about his business even if his trousers are wet. Therefore, the hitting is an act that staff find challenging but the gentleman himself is not a challenge. Furthermore, this phrasing also easily reveals to us that the gentleman in question is also being challenged by the staff’s actions. His ‘behaviour’ is a perfectly reasonable reaction to having your trousers pulled down. 

At this stage, I want to take a brief pause. In an early version of this blog post, I went on to defend the use of the term ‘behaviours that challenge’. Gill Loomes-Quinn provided extensive feedback on this, and wrote that she doesn’t like the term ‘behaviours that challenge’ either. In fact, she wrote that it ‘risks taking us into “deck chairs on the Titanic” territory’. A change in terminology does nothing to challenge the arrangements that position somebody with a disability as a cluster of behaviours that need to be “managed”. 

This got me thinking about what terms I actually use in my day-to-day work (I work on a ward for people living with dementia who have been detained under the Mental Health Act). When someone is banging on doors and windows, I never say that they are “exhibiting challenging behaviours”. When someone has called me a “poof” (or something much stronger), I never refer to this afterwards as a “behaviour that challenges”. And when someone has hit out during assistance with personal care, I haven’t described this as a “challenging behaviour”. 

Instead, I attempt to go some way to understanding the emotion and intention behind these actions. Somebody banging windows is possibly bored and wants to go out; somebody calling me a “poof” is possibly frustrated with my actual or perceived circumvention of their course of action; somebody hitting out during assistance with personal care is possibly feeling threatened. Then, I can attempt to support that person with the situation they are in. 

I have suggested ‘possible’ explanations for certain actions because the understanding changes from person to person, from context to context. To refer to an action as a ‘challenging behaviour’ is an affront to somebody’s humanity, their autonomy, and their self-determination. Of course, sometimes an individual is intending to challenge because they dislike either what is being done, or what they perceive is being done, to them. However, to refer to this as a ‘challenging behaviour’ is to suggest that the person and their behaviour is the problem. It ignores the intention and motivation behind their actions, and constructs the situation as a problem to be solved. With framing such as this, we step very close to simply wanting to resolve the behaviour whilst neglecting the ‘bigger picture’. 

In this specific case, referring to NC urinating in his bedroom as a“challenging behaviour” does not (in and of itself) acknowledge the potential medical and social issues that have led to this action. It gives no insight into his character or the unique circumstances that have led up to the current situation. 

The same can be said of the reference to NC not wanting to “cooperate” with previous medical investigations. In using this term, his agency is diminished. It is instead seen as combative force against the agency of the medical staff attempting to assess him. Implicitly, it is their agency that is seen as valid and a priority but it is being ‘challenged’ by a ‘behaviour’ that needs to be managed.

I am not suggesting that the terms used affected DJ Eldergill’s judgment: he was clearly anxious to understand the root cause of NC’s current situation, and to identify potential solutions. In other words, despite the language he used, DJ Eldergill still made a decision that paid proper attention to the humanity of the person with a disability.

It’s also important to point out that this type of language is not just found in the Court of Protection. The NHS has a webpage titled ‘how to deal with challenging behaviour in adults’ which, quite shockingly, refers to ‘behavioural outbursts’. Everybody can point to examples of their own ‘behavioural outbursts’ but, the NHS tells us, ‘challenging behaviour is often seen in people with health problems that affect communication and the brain’. So, my ‘behavioural outbursts’ need no further exposition but ‘behavioural outbursts’ in those living with a cognitive impairment need to be managed (and even get a webpage on the NHS website to help everyone to do just that). 

Language such as ‘challenging behaviours’ and ‘behaviours that challenge’ positions the person as the problem. It does not acknowledge the systemic circumstances in which they are embedded; circumstances that present the person with a disability as somebody who needs to be ‘managed’ because others (professionals, carers, clinicians, and so on) have a right not to have to engage with this kind of behaviour. It’s important that we do not lose sight of the reality of the social world that we inhabit.

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

[1] Reablement has been defined as ‘services for people with poor physical or mental health to help them accommodate their illness by learning or re-learning the skills necessary for daily living’.

Photo by Steve Johnson on Unsplash

When doctors are not willing to offer treatments

By Celia Kitzinger, 13th March 2022

This was an unusual hearing because of its focus on a treatment (clinically assisted nutrition)  that doctors were not willing to offer.  

By the day of the hearing, the person at the centre of this case (P) had not received nutrition for 10 days, ever since his nasogastric (NG) tube had been withdrawn following problems with NG feeding.

The doctors were clear that this was not now a treatment they were willing to offer – even on an interim basis, and even though there was a risk that P might die by the time of the next hearing.

Clinically assisted nutrition was not, in fact, a treatment about which the court was being asked to make a decision, but it loomed large in the course of the hearing. 

Overwhelmingly, the treatments discussed when serious medical treatment cases come to court are treatments that Trusts are willing to offer, but the patient is refusing them.  Or they are treatments that the Trust is willing to offer, but which either they or the family, do not consider to be in the patient’s best interests.

For example, in the recent case before the court concerning William Verden (“Best interests and kidney transplantation”), the Trust made clear its position that it did not consider a kidney transplant to be in William’s best interests, but that they would carry out the surgery and the post-transplantation treatment if the court decided that it was in William’s best interests (which it did).  

By contrast, in the case discussed here,  the Trust would not provide clinically assisted nutrition and was not giving the court the opportunity to make a best interests decision about it. 

The case (COP 13892144) before Mr Justice Moor on 25th February 2022 concerned a man in his early 20s (P) who’d suffered a cardiac arrest about four months previously. 

Following cardio-pulmonary resuscitation, it became evident that P had suffered a severe hypoxic brain injury. He also has irreversible lung damage, pre-dating his cardiac arrest, caused by untreated Type 1 diabetes.

He’s now in a prolonged disorder of consciousness “on the borderline of the vegetative state and the minimally conscious state” and doctors say that “there is no real prospect of recovering consciousness”.   

There was no dispute that P lacks capacity to make his own decisions about medical treatments.

The Trust’s position

The Trust (represented by Jack Anderson) had made an application to withdraw clinically-assisted hydration and to provide palliative care in the form of intravenous (IV) administration of morphine and midazolam, to reduce symptoms of pain or distress.  

The application before the court was limited to these three treatments only (withdrawing hydration; administering morphine and midazolam).  

The treating doctors have already made clinical decisions not to provide other treatments they see as counter-indicated or futile. These include:

  • clinically assisted nutrition 
  • cardio-pulmonary resuscitation (CPR) in the event of cardiac arrest
  • treatment escalation to the Intensive Care Unit, High Dependency Unit, or Medical Emergency Team
  • surgical interventions
  • antibiotics in the event of infection. 

They have accessed second opinions supporting this course of action.

The doctors’ decisions not to provide these treatments are purely ‘clinical’ and do not involve consideration of P’s best interests.  

The underlying principle is that the court must make a decision about which treatments are in P’s best interests by reference to the ‘available options’.

The doctors are willing to offer hydration (which they are currently providing, although they do not consider it to be in P’s best interests) and morphine and midazolam (which they are not currently providing, although they do consider it to be in P’s best interests). These treatments are ‘available options’. 

The doctors are not willing to provide clinically assisted nutrition, CPR, treatment escalation, surgical intervention or antibiotics –  so these treatments are not  ‘available options’ before the court, and are therefore not a matter for best interests decision-making.  

The family position

In their position statement, P’s parents (represented by Sophy Miles) oppose withdrawal of hydration and want an independent expert to advise on P’s condition and whether nutrition can be provided via Total Parenteral Nutrition (TPN). (P’s partner was also in court, and shared the parents position but was unrepresented.)

The parents don’t believe that their son is at the “lower end” of the spectrum of consciousness. They believe they have evidence from their own observations and videos they’ve recorded that P is responsive. 

And although family members clearly don’t want their son/partner to suffer pain, they are concerned that the palliative care regime will hasten his death.  

The parents also take the position that the Trust should have made an application to court much earlier – as soon as it became clear that there were fundamental disagreements between treating clinicians and the family about the way forward.  

Those disagreements became obvious back in November 2021 when the first Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notice was signed and the parents registered their objection to this.  They also registered an objection in early February 2022, when – shortly after P was moved to a rehabilitation unit – a second DNACPR notice was signed. (This is, however, a purely ‘clinical’ decision and I don’t really see how a court application could have been appropriate at this point.)

At a meeting between clinicians and family on 15th February 2022, the day feeding was stopped, the parents expressed their disagreement both about the withdrawing of nutrition (a clinical decision) and about the proposal for palliative care, which they believe will actively hasten P’s death. P’s mother said at that meeting:  “Anyway, I don’t agree with the referral to palliative care and I want that to be recorded”.

The parents are concerned that a delay in making the application “has effectively pre-empted the decision of the court.  P’s condition is now perilous given that he has not received nutrition since 15 February 2022”. 

They asked for the hearing to be adjourned to enable appointment of an independent external expert chosen by the family to explore all of the treatment options, including other methods of providing P with nutrition (specifically Total Parenteral Nutrition (TPN))

The Official Solicitor’s position

The Official Solicitor (represented by Katie Gollop QC) supported the family’s view that the hearing should be adjourned to permit an independent expert appointed by the family to provide the court with a second opinion.  

She also “grasped the nettle” – her phrase – and made an argument for the provision of nutrition to P until the second opinion was provided.

Why clinically assisted nutrition isn’t an ‘available option’: Medical and legal background

At the time of the hearing,  P had been without nutrition for 10 days. 

Doctors had withdrawn clinically assisted nutrition from P on the grounds that it is clinically inappropriate. 

On 15th February 2022 (10 days before the hearing), nasogastric feed was observed coming out of P’s nose. The hospital say that “as a result of P’s brain damage, normal gut movement is disordered such that food may flow forwards or backwards, or remain in place, giving rise to risks of aspiration into the lungs, or food and air becoming trapped in the gut….. Significant quantities of small bowel contents continue to be aspirated from the stomach”.  Feeding was stopped because of the risk of aspiration (although he continues to receive intravenous fluids).

An alternative method of providing nutrition is Total Parenteral Nutrition (TPN).  The Trust says that this is “technically possible but in the context of catastrophic brain injury and chronic aspiration, would be clinically futile and may cause serious complications such as infection and thrombosis”.  They are not willing to provide it.

The key principle here is that if a patient requests a medical treatment that doctors consider not clinically indicated, they are under no legal obligation to provide it  – although they should seek a second opinion when there is any discord between their views and that of the patient.

It is well-established in law that patients cannot demand clinically inappropriate treatment, and that the court cannot demand what clinicians consider to be clinically inappropriate treatment on P’s behalf. There is no obligation to provide ‘futile’ treatment (Burke)

So far as the general position is concerned, we would endorse the following simple propositions advanced by the GMC:

i) The doctor, exercising his professional clinical judgment, decides what treatment options are clinically indicated (i.e. will provide overall clinical benefit) for his patient.

ii) He then offers those treatment options to the patient in the course of which he explains to him/her the risks, benefits, side effects, etc involved in each of the treatment options.

iii) The patient then decides whether he wishes to accept any of those treatment options and, if so, which one. In the vast majority of cases he will, of course, decide which treatment option he considers to be in his best interests and, in doing so, he will or may take into account other, non clinical, factors. However, he can, if he wishes, decide to accept (or refuse) the treatment option on the basis of reasons which are irrational or for no reasons at all.

iv) If he chooses one of the treatment options offered to him, the doctor will then proceed to provide it.

v) If, however, he refuses all of the treatment options offered to him and instead informs the doctor that he wants a form of treatment which the doctor has not offered him, the doctor will, no doubt, discuss that form of treatment with him (assuming that it is a form of treatment known to him) but if the doctor concludes that this treatment is not clinically indicated he is not required (i.e. he is under no legal obligation) to provide it to the patient although he should offer to arrange a second opinion.

§50,  Burke v General Medical Council [2005] EWCA Civ 1003, [2006] QB 273 (my emphasis)

In sum, “ a patient cannot demand that a doctor administer a treatment which the doctor considers is adverse to the patient’s clinical needs” (§55 Burke v General Medical Council [2005] EWCA Civ 1003, [2006] QB 273)

In respect of patients who lack capacity to make their own decisions about treatment, the principle laid out in Aintree v James [2013] UKSC 67 is that the Mental Capacity Act 2005 is concerned with enabling the court to do for the patient what he could do for himself if he had capacity to make the relevant decision, but it goes no further than that.  This means that the judge in the Court of Protection has no greater powers than the patient would have if he were capacitous. Patients cannot demand that doctors administer treatment which the doctor considers is not appropriate – and nor can the judge.

In this case, doctors had determined that nutrition would not be appropriate and so the judge is not able to order that the patient should receive it.

What happened at the hearing?

The hearing lasted just under an hour.  

Jack Anderson, counsel for the Trust provided a short summary of the case, outlining the treatments that are not on offer (including nutrition), and the treatments that are on offer.  

Concerning the treatments on offer, he said: 

“The Trust is prepared to offer, if the court were to decide it were in P’s best interests, continued hydration.  But for the reasons in the Position Statement, it’s submitted that it’s not in his best interests, in a situation where he won’t regain consciousness, and has no opportunity to experience any positive quality of life but may be experiencing negative quality of life in the form of distress, pain and discomfort. It is also the Trust’s position that it would like to administer a continuous infusion of morphine and midazolam, carefully titrated. This would minimise pain, and not have any adverse effect on his life expectancy.  The alternative is to administer pain relief on an ad hoc basis, but the disadvantage of that is that it won’t take effect until it’s been prepared, administered, and taken effect in the body – so P would experience distress at the onset of any episode.  Also, that mechanism of delivery makes it more difficult to tailor the pain relief so that the minimum, and no more than the minimum, pain relief is administered at the time it is needed.  The Trust has secured a second opinion [from a neurorehabilitation specialist] who is in broad agreement with our application.”[1]

He  added that he understood why the family would like the opportunity to obtain their own evidence and the Trust was “not in principle opposed to allowing them time to do so, so long as that doesn’t impact on the clinical decision-making in the meantime, and providing also that IV administration of morphine and midazolam can be implemented so that any pain or discomfort is relieved”. 

Katie Gollop, counsel for P via the Official Solicitor expressed her sympathy for the family “who must be in a traumatised condition”.  She said: “The Official Solicitor is sensitive to the fact that they feel they would have liked to be having these conversations last week, rather than between a rock and a hard place now, in terms of the treatments said to be available against a clock that is allowing them rather less time than they might otherwise have”.  

This references the family view that the Trust should have applied to the Court much sooner – at least at the point when the decision was made not to continue to provide clinically assisted nutrition (on 15th February 2022).

Katie Gollop also wanted to “grasp the nettle” (her words) of “the treatment that is and isn’t on offer”.  She noted that “the hospital has said it will not provide nutrition” and that “the court cannot order the provision of treatment”.  But went on to suggest the following” 

Gollop:  On the other hand, and in circumstances where arguably there has been some delay – since it was decided that P should be for palliative care only on 15th February – then in the case of a party who approaches the court for judicial determination (as opposed to not going to court), there is a question about how far that party would then go to enable the court process fairly to take place.  Otherwise, the applicant can dictate, or steer, that which is open for judicial determination and that which is not.

Judge:  My understanding was that to continue NG feeding is positively dangerous. Feed was coming out of his nose, he was aspirating, his stomach was distended, it was causing all sorts of difficulties.

Gollop:  His stomach is not functioning.  The only alternative to NG feeding is Total Parenteral Nutrition [TPN]. TPN is the only option available and that’s what the family would like some evidence about, to look at that issue, rather than feeding into the stomach.  There is evidence in paragraph 9 of the Trust’s position statement that TPN may cause infection and thrombosis. But without food he has no chance.  It’s not expected he’ll die imminently, but he’s obviously being weakened by days and weeks of no food.  So, I would ask for there to be some consideration, on a purely interim basis – no more than 10 days – that the Trust might see its way to provide IV nutrition in circumstances where they have decided to make an application for a judicial determination.

Sophy Miles, representing the family, expressed gratitude for the submission from the Official Solicitor and said she “would invite Your Lordship to give consideration to the proposal for TPN”.  The family had located both a gastrointestinal expert and a neurology expert who would be able to provide reports relatively quickly, if the judge were minded to order an adjournment.

The judge expressed concern about adjourning the hearing and delaying a decision on the grounds that P might be in pain and Sophy Miles reported that “having had the benefit of advice from a legal team, my clients do agree to pain relief being provided on the basis of the care plan, and on the understanding that it’s not going to hasten P’s death”.

The following exchange then took place between Jack Anderson (counsel for the Trust) and the Judge:

Anderson:  On TPN – my instructions are clear.  That isn’t treatment they’re willing to offer at the current time, even on an interim basis.

Judge:  In my view, there’s a need to keep a level playing field while I collect all the information necessary to resolve this case.

Anderson:  It’s not within the court’s jurisdiction to order clinicians to give a treatment.

Judge: I wasn’t considering making an order that they should do so.  I can see why the NG feeding had to end – that was causing irreparable damage. But in terms of the TPN, the Trust is only raising the risks of thrombosis and infection.  The parents would say those are risks that should be taken because they don’t want P to pass away before the court has made a decision.

There was then some discussion about how quickly the expert reports from the family’s gastroenterologist and neurologist could be supplied (“I don’t think it can wait for a month”, said the judge). The implication was (I think) that P might well have died by then.

Katie Gollop (for P via the Official Solicitor) then invited the judge to make a “declaration” that nutrition was in P’s best interests – rather than an “order” requiring clinicians to provide it.  She drew a comparison with the Charlie Gard case in which the hospital was not prepared to provide experimental treatment (available abroad) and the domestic courts had ruled that ongoing treatment was not in the child’s best interests – but the hospital continued to provide it “so that the judicial process [the application to the European Court of Human Rights] could be properly completed”.   The position was “somewhat fudged” (because the hospital concerned was willing to provide treatments contrary to the child’s best interests on an interim basis) but involved discussion of “the difference between a declaration and an order”. Drawing on that case, she said:

“We’d like to invite you to provide a judicial determination – and at the moment, the clinicians are taking the perspective:  ‘we’ll be the arbiters of the dividing line between the clinical, over which you have no jurisdiction versus those treatments we say we are willing to provide if you consider it in P’s best interests’.  We would like you to provide a declaration that nutrition is in P’s best interests – not an order.”

Jack Anderson (for the Trust) responded:

“The distinction between a ‘declaration’ and an ‘order’ seems artificial, if what is intended is that the court is applying a degree of pressure on clinicians to deliver treatment which clinicians don’t consider appropriate.  There is nothing unsatisfactory that clinicians have identified that there are those treatments they are not willing to provide, and treatments where there’s a dispute – in that treatment is offered, but clinicians don’t consider them in P’s best interests.”

He added, in relation to the facts of the matter, that although the risks are different, the Trust’s view is that neither TPN nor NG feeding is in P’s best interests in any event.

“You don’t accept that it’s in his best interests to have IV fluids either,” said the judge, “but that is something you are willing to accept”.

“Each particular treatment falls on one side of the line or the other”, said Jack Anderson for the Trust.  “There is nothing untoward about that.  It’s important that we understand the desire of the family to obtain their own evidence, but fundamentally these proceedings are about the treatment of P, and clinicians have to make a decision about what treatments they can offer.  It is not appropriate for the court to put pressure on the clinicians.”

Judgment

In a short ex tempore judgment, Mr Justice Moor first briefly outlined the facts of the case, and then made some decisions.

On withdrawal of IV fluids, he said: “it would be wrong for me to deal with that substantively today.  The parents, who oppose the Trust’s application, have had no opportunity to put evidence to the court, and I’ve had no opportunity to see their case, or hear what their expert opinion might say.  For there to be a fair trial under Article 6, they must have that opportunity. I am not going to determine those substantive matters today”. 

On pain relief, he said: “I watched a short video of P in hospital.  I am no doctor, but I was concerned he might be in pain and distress.  This is also something the treating clinicians were concerned about, and [the Official Solicitor’s agent] who went to see him.  …. We cannot have P in pain and distress.  I am grateful to Ms Miles for indicating to me today that the parents do now accept morphine and diazepam[2].”

On TPN, he said: “This is a matter that has troubled me.  I understand Mr Anderson’s position that I cannot require treating clinicians to offer a treatment that is against their belief about what is right for this patient. There have been some criticisms about the delay in bringing this case on, and I make no comment on that.  But if it had come before the court two weeks ago, the issue would not be so stark as it is now.  I need to adjourn this case to hear this case fairly. I would not want P to die of starvation between now and the case being heard.  I understand there are downsides to TPN.  But the infections and complications of TPN are not in the same league as the problems of NG feeding.  I do see the force of what both Ms Gollop for the OS and Ms Miles for P’s parents say about effectively maintaining a level playing field until this case can be determined.  I am not making an order.  I am not even making a declaration.  All I ask in this judgment is for the Trust to consider it again, on the basis that this court should have the ability to deal with this case at a final hearing – rather than the matter being taken out of the court’s hands by what the Trust itself accepts would be a very unpleasant death.  I intend merely to ask the Trust to consider the matter again.”

This is as close as I have ever heard a judge come to putting pressure on clinicians to administer a “clinically inappropriate” treatment that is not on offer as an ‘available option’ before the court.

The case will be back in court on 14th March 2022.  It’s listed to be heard at 10.30am before Mrs Justice Judd.

Celia Kitzinger is co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project, and co-director (with Jenny Kitzinger) of the Coma and Disorders of Consciousness Research Centre.  She has published widely on end-of-life decision-making for people in prolonged disorders of consciousness.  She tweets @KitzingerCelia

[1] We are not allowed to audio/video record hearings, and so the quotations I have used from the hearing are as accurate as possible based on the notes I touch-typed during the hearing itself, but they are unlikely to be verbatim.

[2] This was an error – he meant midazolam and was corrected by Jack Anderson before the end of the hearing.

Photo by Pawel Czerwinski on Unsplash

Caesarean: An emergency hearing

By Celia Kitzinger, 10th March 2022

The woman at the centre of this case, AX, is in her late twenties. She’s 40 weeks pregnant and may go into labour at any time. 

She had an emergency caesarean section with her first child, three years ago. That child now lives with AX’s mother (the child’s grandmother) under a Special Guardianship Order. The relationship between AX and her mother is strained as a result.

After her last experience of a caesarean, AX is adamant that she doesn’t want a caesarean section this time.

But today the court declared her to lack capacity to make her own decision about mode of birth (she has schizoaffective disorder) and approved an order declaring it lawful for the medical team to anaesthetise AX (including a general anaesthetic if necessary) and to deliver her baby by caesarean section.

This is one of a whole series of court-authorised caesarean section hearings I’ve watched over the past 18 months, most of them held as “emergency” hearings. (see Capacity and elective caesarean, Elective caesarean in her best interests, An urgent court-authorised caesarean, C-section and anaesthesia).

The hearing

Counsel for the Chelsea and Westminster Hospital NHS Foundation Trust was Parishil Patel QC. I’m grateful to him for sharing a case summary and draft order with me.  

Counsel for AX was Katie Gollop QC, via the Official Solicitor. She’d been only very recently appointed to represent AX (“parachuted in” was how the judge put it), and she hadn’t had an opportunity to prepare a position statement.

The judge was the Honourable Mr Justice Francis. 

Various medical staff had provided witness statements, including AX’s consultant obstetrician, consultant anaesthetist, consultant in liaison psychiatry, and consultant perinatal psychiatrist.  Some of these witnesses were in court ready to give oral evidence, but counsel did not consider this necessary.

AX’s stepmother (who is also her chosen birth partner) was also in court, and addressed the judge, providing some background information as to her view of AX’s wishes, and why AX might hold the views she does.  

I think the hearing had started before I joined at 4.15pm (10th March 2022), when the court reconvened following a break to allow Katie Gollop to catch up with the paperwork.  I don’t know what happened before I joined, but I assume that counsel for the applicant Trust had set out the case for approving the draft order.  The part of the hearing that I watched lasted for about 45 minutes (including the judgment).

An emergency?

As so often in these caesarean cases, I wasn’t sure why this came before the court as an emergency.  

Her stepmother (and intended birth partner) said that AX had experienced mental health problems for at least 8 years. She is diagnosed with schizoaffective disorder.  She’s had nine previous hospital admissions, and on this occasion she’s been in hospital since 24th February 2022 under s.2 of the Mental Health Act 1983 because of a deterioration in her mental health.  That’s two weeks during which the hospital could surely have figured out that an application to the court would be necessary.

It also seems she’s been at least “sporadically compliant” (I’m quoting counsel for the Trust) with antenatal care during her pregnancy.  So at various points during the past few months, professionals have met with her, and she has “allow[ed] foetal monitoring”.  These interactions must surely also have offered the opportunity to plan ahead for the birth?

AX has “fixed beliefs” that “the health of the foetus is not compromised and that there are no risks in having a spontaneous vaginal delivery”.  These “fixed beliefs” run counter to those of the medical staff treating her – and must have done so for some time before this application was made when she is in the last week of her pregnancy.  

As with some of the end-of-life decisions that come before the Court of Protection, I am puzzled and dismayed that opportunities to plan ahead seem to have been missed. 

Was it not possible to make an earlier application to the Court? It was surely forseeable that an application might be required.

 “Urgent applications … must be limited to those rare and few cases where a genuine medical emergency has arisen and an immediate court order is necessary. I do not consider a failure to plan appropriately and/or a failure to identify a case where an application to the court may be required constitutes a genuine medical emergency.”  (Keehan J in NHS Trust & Ors v FG [2014] EWCOP 30)

And if (as seems possible) there had been times during the past 40 weeks when AX had capacity to make her own decisions about mode of delivery and wished capacitously to refuse a caesarean under all or some conditions should she lack capacity to do so in future, she could have been advised to make a written statement (of the kind given legal weight in s.4(6)(a) of the Mental Capacity Act [MCA]) or even a legally valid Advance Decision to Refuse Treatment (ss. 24-26 MCA) so that her wishes could not be over-ridden.

Alternatively, might there have been a time during the past few months when she was well enough to recognise that, even though she didn’t want a caesarean, it would be better to have one rather than risk her baby’s life – and she could have given ‘advance consent to treatment’ she knew she might later refuse when she became ill. ‘Advance consent’ isn’t legally binding in the way that advance refusals are (for more information see: Psychiatric Survivors’ Views on Advance Consent and ‘Forced’ Treatment) but they are enormously important as written expressions of a person’s wishes, which must be considered when making best interests decisions about them.

Even without the capacity at any point during the last few months to make her own decisions about mode of delivery, it is likely that she could have contributed to a future best interests decision by documenting (with support from her psychiatric and obstetric teams) her wishes and feelings about caesarean vs vaginal birth.  Did anyone discuss with her what was so upsetting or frightening about the previous caesarian, and how a future caesarean might be managed so as to make it less upsetting?  Did anyone raise the possibility that she might formally appoint someone she trusts (maybe her stepmother) to make decisions for her if she could not (ss. 9-14 MCA). 

Maybe there was some preparation and forward planning that I’m not aware of, but it certainly wasn’t evident from watching the hearing.

The medical need for a caesarean

I didn’t learn from the hearing, or from the documents I was sent, why a caesarean was considered medically necessary.  I assume the details were laid out in the witness statement by the obstetrician.  

Assertions were made in court that a vaginal delivery posed “risks to her and her foetus”, that there was a “high risk of still birth” and that if she were to go into labour spontaneously and attempt a vaginal delivery, there would be “a high likelihood of a caesarean being required to deliver the child safely”.  

It’s likely that the previous caesarean is a factor in this, and – perhaps most saliently –  the fact that she has developed gestational diabetes and “her compliance with medication to manage the risks from diabetes has been sporadic” (Trust).  

According to the NHS website, “most women with gestational diabetes have otherwise normal pregnancies with healthy babies”, but the site also lays out a whole raft of possible problems:

  • “your baby growing larger than usual – this may lead to difficulties during the delivery and increases the likelihood of needing induced labour or a caesarean section
  • polyhydramnios – too much amniotic fluid (the fluid that surrounds the baby) in the womb, which can cause premature labour or problems at delivery
  • premature birth – giving birth before the 37th week of pregnancy
  • pre-eclampsia – a condition that causes high blood pressure during pregnancy and can lead to pregnancy complications if not treated
  • your baby developing low blood sugar or yellowing of the skin and eyes (jaundice) after he or she is born, which may require treatment in hospital
  • the loss of your baby (stillbirth) – though this is rare.”

The same website also states:

“If you have gestational diabetes, it’s best to give birth before 41 weeks. Induction of labour or a caesarean section may be recommended if labour does not start naturally by this time. Earlier delivery may be recommended if there are concerns about your or your baby’s health or if your blood sugar levels have not been well controlled.”

AX’s stepmother said that when she’d spoken to AX the previous day, she’d said she was “controlling her diabetes herself with healthy eating” and she was “adamant there’s nothing wrong with her baby”.

According to the Trust, “she has fixed beliefs about her care and treatment, namely that the health of the foetus is not compromised, and that there are no risks in having a spontaneous vaginal delivery”. 

Of course, a woman with mental capacity to make her own decision about mode of delivery could decide to refuse a caesarean (and opt for a vaginal delivery) whatever was said by obstetricians about the risks to herself and her foetus.  

But AX has been deemed to lack the mental capacity to make that decision.

Capacity

The evidence on capacity came from two psychiatrists who had assessed AX as having schizoaffective disorder and being currently unwell.  She can understand, retain and communicate information relevant to the decision about mode of birth, but she is (they say) unable to weigh it properly.  She has “poor ability to evaluate the options”, “limited mental flexibility, foresight and judgment”. 

The judge concluded that “I’m in no doubt that I can and must conclude that P lacks capacity.  The jurisdiction of this court is therefore established”.

Best interests

There seemed to be no doubt in anyone’s minds but that a caesarean was in P’s best medical interests.

But what of her wishes and feelings (s.(6)(a) MCA)?  What are the beliefs and values that would likely influence her decision if she had capacity (s.(6)(b) MCA)?  What factors would she be likely to consider if she were able to do so (s.(6)(c) MCA)?

The court learnt a bit about P from her stepmother – although it was clear that the stepmother supported the application from the Trust to order a caesarean against AX’s stated wishes.

She said AX “feels she’s being controlled” by people who try to provide her with guidance. That might be true! A midwife had talked to her about caesarean the day before. Counsel for the Trust said that “the hospital thought that [the midwife] could improve her compliance and their meeting yesterday went well. But today she completely reverted back to refusing a caesarean, so the avenue that was to improve her compliance hasn’t worked”.

Her stepmother also said that AX’s “biggest fear” is that her baby “is going to end up in the care system – the longer she stays pregnant, the longer she has the baby.  She’s asked me when she has it, is the system going to take the baby away?  If we could give her an insight into what the plan is for after, maybe she’d willingly have the caesarean with some kind of hope that she may be able to keep her child.”

The judge pointed out that he knew nothing about the care proceedings, either for AX’s previous child or for this one, and that it would be wrong to offer “false hope”. I think it was stated that there is already a child protection plan in place for the unborn child.

Overall, I got very little sense of AX as a person.  I don’t know why she wasn’t in court. Perhaps she’d been offered the opportunity and declined, as many Ps do.  I don’t believe the judge had met her: he certainly didn’t mention having done so.  I don’t think AX’s litigation friend had met her either, since she’d so recently been instructed.  

The absence of AX’s ‘voice’ in the proceedings was one consequence of the lack of advance planning and the ‘emergency’ nature of the hearing.

Of course AX was, technically, represented by her litigation friend, Katie Gollop via the Official Solicitor.  But Katie Gollop argued that a planned (“elective”) caesarean was in AX’s best interests.

So this was one of those cases where the lawyer representing P makes an argument that runs directly counter to P’s stated wishes.

This happens reasonably frequently because the Official Solicitor is charged with making submissions in P’s best interests – which is not always the same as what the person says they want (see Alex Ruck Keene’s blog post, “Litigation friend or foe”).

“It’s never comfortable to have to say that it’s in P’s best interests to have a serious surgical intervention against their wishes”, said Katie Gollop.  

She did so because, she said, the obstetrician’s evidence in paragraphs 12 and 13 of her statement (to which I don’t have access) is that there is “a high likelihood that a caesarean section would be required in any event, even if she were to commence labour, and ‘have a go’ as it were.  And in the next paragraph, about the anaesthetic risk – which is particularly high if you crash into an unplanned emergency caesarean section.  I completely understand she’s had the experience of a caesarean section and didn’t like it and doesn’t want it again.  But it’s important to her to have a healthy and live birth, and have an opportunity to be a mother to her child.  So I would advocate for a precautionary approach – given the risk of ending up with a c-section anyway”.  

The risk of an attempted vaginal delivery resulting in a dead baby was raised several times – and as Katie Gollop said, whether or not she actually has the opportunity to live with this child (depending on care proceedings), “a live birth will give AX options that don’t exist with a stillbirth, of which there is a high risk”. 

Judgment

Having established to his satisfaction that AX lacks capacity to make her own decisions (and hence that the jurisdiction of the court is engaged), the judge was clear that the “risk of stillbirth” played an important part in his best interests decision-making.

For the judge, the risk is “if I do not intervene soon, it’s extremely likely that the foetus would be lost”.   He considered the “prospect of a vaginal delivery going wrong, with AX refusing to accept a caesarian, leading to the sort of disaster identified by [the consultant obstetrician] in her report.  I remind myself that I must apply the best interests test to AX and not to the foetus, but the consequences to AX of a chaotic birth, resulting in the loss of life to her baby, would be simply devastating. I know nothing about the care proceedings. I don’t know whether she’ll be able to provide a home for her baby. I make no comment on that.  But I do consider the psychiatric and emotional consequences to any mother – any parent – even without AX’s psychiatric condition – in that situation.”

He approved the order the relevant part of which (in the draft form I was sent) reads as follows:

IT IS HEREBY DECLARED THAT:

 1.     AX lacks capacity:

a.      to make decisions regarding her antenatal care and treatment and/or in connection with the management of her labour and birth, including whether to undergo a caesarian section;

b.     to conduct these proceedings.

2.     Having regard to the best interests of AX, it is lawful for the medical and nursing practitioners who have responsibility for her care and treatment to do the following in accordance with the Care Plan appended hereto:

 a.      To provide such care and treatment to AX, including nursing care, as may in their opinion be necessary and proportionate for the purposes of delivering safely her baby, including but not limited to:

                                      i.     monitoring AX’s condition;

                                    ii.     monitoring the condition of the foetus inside AX’s uterus;

                                   iii.     the insertion of needles for the purpose of intravenous infusions, sedation and/or anaesthesia;

                                   iv.     the administration of sedation, general anaesthesia or regional anaesthesia;

                                     v.     a caesarian section to deliver the baby;

                                   vi.     such peri-, post natal care and treatment as is required to ensure that AX suffers the least distress and harm and

which allows her baby to be delivered safely.

 b.     Administration of such medical treatment and nursing care as may be appropriate to ensure that AX suffers the least harm and distress and retains the greatest dignity.

Draft Order

The hearing ended with the judge thanking everyone – especially AX’s stepmother and the medical professionals – for attending the hearing at short notice.  And he asked “from personal concern not professional duty” if someone would inform him of the outcome of the case.

Reflection

Court-authorised caesarean sections are a draconian use of judicial power to compel a woman to submit to surgery she doesn’t want.  I find them disturbing to watch. I experience a visceral sense of outrage at the idea that anyone might subject me to medical treatment against my will.

As a feminist, my values are strongly: My body, My choice.

Judges are always meticulous in avoiding any suggestion that their decisions are influenced by a notion of “foetal rights” or that they are protecting the life of an unborn child against the unwise decisions of its mother. Instead, the birth of a live baby (as against the risk of stillbirth) is explicitly evaluated in terms of its likely effect on the woman, who is presumed or known to want a live baby.

And it can be quite frustrating to observe court hearings – especially ‘emergency’ ones like this – without enough of a background understanding of the case (there was no summary of the case in today’s hearing), and without sight of the witness statements or the expert evidence that the lawyers and judge are relying on.  

I hope there was good evidence that a caesarean was medically required.  I am acutely aware of other cases (e.g. Guys and St Thomas [2019] EWCOP 35) where doctors have made pessimistic assessments of women’s ability to safely deliver a child via vaginal birth, and  judges have approved caesareans  – but in the event women have given birth without the need for surgical interventions. 

I hope there was good evidence that the psychological and emotional harm caused to AX by a planned caesarean against her wishes would be outweighed by the psychological harm caused by violation of her autonomy and bodily integrity.

I hope the court is not displaying a ‘protection imperative’ in making this decision about AX.

More than anything, I hope for better advance planning for pregnant women with mental health challenges in the future, so that they can exercise their right to bodily autonomy (even if that means making decisions that others see as unwise or morally repugnant) and can have their wishes and feelings fully acknowledged and respected in best interests decisions made about them.

Celia Kitzinger is co-director, with Gill Loomes-Quinn, of the Open Justice Court of Protection Project. She tweets @KitzingerCelia. She thanks Brian Farmer for alerting her to this emergency hearing.

Photo by freestocks on Unsplash