Promoting Open Justice in the Court of Protection

Delays in finding an Acquired Brain Injury Placement: “A very significant degree of muddle”

By Gaby Parker, 29^th June 2021

On 23^rd June 2021 I observed a hearing (via MS Teams) before Mr Justice Hayden in the Court of Protection: COP 1354439T Re. PH.

The case was about finding a suitable placement for P who remains in hospital although he is fit for discharge and has been for a long time.

The hearing turned out to be a continuation of a hearing from two days earlier (which I had not attended). It was clear that issues in P’s care had been before the court on a number of previous occasions, with attempts to find a suitable placement for P first coming before Mr Justice Hayden in August 2020.

Counsel for P (via the Official Solicitor) was Ian Brownhill, whilst counsel on behalf of the Hospital Board was Roger Hillman. Hayden J very helpfully invited Mr Hillman to open the hearing with a history to the case.

Background to the case

P was described as a man in his 40s with complex medical needs after suffering a range of serious injuries due to impulsive behaviour in the context of alcohol and drug abuse.

We were told that in 2016 P drank highly corrosive hydrogen peroxide resulting in oesophagectomy (removal of part of his oesophagus), splenectomy (remove of spleen), tracheostomy and a colostomy with PEJ (percutaneous feeding tube into the small intestine).

He has significant communication difficulties as a result of his tracheostomy and cannot talk, save for mouthing words. He also has a history of seizures, and his situation was further complicated in August 2019 when a severe fit triggered a diffuse hypoxic brain injury. This affected his cognitive function along with reducing his fine motor skills.

He had previously been assessed by a consultant clinical psychologist in November 2020 who reported that P had an Emotionally Unstable Personality Disorder, Impulsive Type^[1], which had been exacerbated by the acquired brain injury. He also assessed P as lacking capacity in a number of respects, including to litigate and to decide on his residence and care – although in a further report in February 2021 he noted P did have capacity to decide whether or not to accept his PEJ feed and the care associated with this.

There had been considerable difficulties finding an onward placement for P, primarily (it was said) as a result of his need for a tracheostomy and what were described as his “challenging behaviours”. These were reported to include violent assaults on care and medical staff, fire-raising, removing his tracheostomy cuff, and also refusing to allow himself to be PeJ fed (his weight dropping to just 42 kilos at one stage).

P remains in hospital, despite having been ready for discharge since the end of 2019. Two placements in specialist care facilities had broken down (in January and July 2020) as a result of the units being unable to manage his challenging behaviour and so he was returned to hospital to await a suitable placement. Many enquiries had been made, but reportedly many potential placements had declined to accept P, saying they could not deal with the range of needs with which he presents.

On 19^th January 2021, the court was told that P was awaiting a move to a planned rehabilitation placement specialising in brain injury, mental health and challenging behavioural needs. This has still not happened. The placement has not explicitly refused to accept him, but there had initially been delays because of the pandemic and lack of staff availability and more recently a succession of subsequent delays as the placement wanted a number of issues addressed in relation to the safe management of P’s needs. This has led, said Roger Hillman (on behalf of the Hospital Board) to “a loss of faith as to whether [Placement] is ever, in reality, going to accept P as a patient“.

Two days before the hearing I observed, the court had been told that a key part of the problem with finding a suitable placement was the need for safe management of P’s tracheostomy – which he had pulled out in May 2021 and had since refused to have replaced.

The Hospital Board had assumed that the tracheostomy needed to be replaced. But counsel on behalf of P had not had sight of any capacity assessment or best interests analysis about this – and as it turned out, much of the hearing I observed concerned whether or not there was in fact a medical need for the tracheostomy.

Does P need a tracheostomy?

At the hearing just days earlier, it appeared that the position of the healthcare provider had been that there was a clinical need to replace the tracheostomy. However, P’s partner had indicated to the judge that she had heard different opinions about this from the junior doctors, and this led the judge to order a formal report on the matter.

Since the previous hearing, the healthcare provider had sought the opinion of a consultant otolaryngologist, who had advised that the tracheostomy was not necessary.

This was hugely significant, as this might lead to a change in opinion of various placements that had previously felt unable to accept P.

This revelation spurred the first of many challenges from Hayden J:

“On Monday I was told that, given the challenges regarding the tracheostomy, there was probably nowhere in the country that would have him. It now seems, if I have got this right, that the many months of delay resulting from questions and concerns about the tracheostomy from [Placement] were all predicated on the assumption that the tracheostomy is needed. And now it emerges that it isn’t. Such muddle and confusion in a case before the High Court gives me cause for anxiety, and a particular anxiety that P is not being well-served. It’s difficult to see, Mr Hillman, without meaning to press you, how you could not concede the very significant degree of muddle.^[2]”

Addressing Mr Brownhill (Counsel for P) Hayden J said “You must have been very surprised by [Consultant’s] report”. “Very surprised indeed,” he replied, “there was a palpable shock when we read it.”

The court heard evidence from the consultant otolaryngologist who had provided the new opinion regarding the need for tracheostomy, from the senior matron caring for P, and from P himself (although public observers were asked to leave while Hayden J spoke with him privately). It appeared there had been considerable breakdown in communications between different healthcare professionals in this case, with Hayden J noting “it is rare to see a breakdown on such scale”.

“If P had not decided to take his tracheostomy out himself, it would still be in. And it’s not needed. And with it in, he cannot communicate with his partner or the outside world, and it has undoubtedly skewed the options for rehabilitation. I consider that to be pretty alarming.” (Hayden J)

However, towards the end of the hearing, P’s partner (who had been present throughout) raised a note of caution and asked for it to be “on record that I still have grave concerns about the tracheostomy. [Consultant] said there would be a very low risk without it, but my understanding is ….” She then gave a fairly detailed account of P’s medical history, including the fact that he “barely has any oesophagus left”: She said “he’s had his whole stomach removed as well, so the swallow has nowhere to go apart from into the lungs. Is [Consultant] aware of that?” The judge reassured her that “what I want to happen now is a proper analysis of all these issues, so that we have a better picture of how his different clinical needs interrelate.”

To the barristers, the judge said that there “were features of [Consultant’s] evidence with which I could have been more comfortable than I was, but he only saw P once, he didn’t have access to the full medical records, and had relatively compromised recollection of the patient he saw”. The medical necessity for the tracheostomy needs to be checked “so that [P’s partner] and I can be reassured”. He added: “I don’t know what his needs are for the future. And the fact that I don’t know is what is worrying me”.

“A very significant degree of muddle”: My reflections

Listening to the contributions, a number of factors stood out as contributing to the catastrophic breakdowns in communication.

The presence of P’s tracheostomy meant he could not speak, and the nursing evidence made clear that this was inextricably linked with behaviours that challenged the care staff. Since he had removed the tracheostomy, there had been a marked improvement in his engagement with care: the judge referred to him as “blossoming and restored to communication with the world”.

“In the first few months his behaviour could be very challenging. I think initially he was very low in mood, and he was not complying with the recommendation of the nursing and medical team in relation to feeds. … Being able to talk, he’s changed significantly. Being able to communicate he’s been laughing and joking with the staff. He’s feeling more confident in himself. His frustration really was not being able to communicate. His whole impression about how his life is going to be able to move forward has completely changed.” (Matron)

Mr Justice Hayden asked whether anyone has told P that he doesn’t have to have a tracheostomy, but none of those in the courtroom at the time knew the answer to that question.

During the lunch break, the judge visited P via the video-platform: “I told P that he was not going to be required to have a tracheostomy. It was fairly obvious to me that he did not know this. He responded with obvious enthusiasm and put his thumb up to me in a celebratory gesture.” (Hayden J)

It was subsequently reported to the court that P was “very, very pleased that you included him in this discussion and was smiling considerably. ‘Very chuffed’ were his words.”

One does not need to be a psychologist to appreciate that a person who cannot communicate through usual means will seek to do so by whatever means are available to them. In P’s case, he communicated his frustrations by controlling his nutritional status and rejecting care. It was not clear what (if any) efforts had been made to establish alternative, reliable communication methods with him. P was noted to use a tablet to watch Netflix and listen to music; I was left with many questions about whether this had or could have been used to support better communication at an earlier stage.

There were also systemic, organisational factors at play. P was noted to have been admitted under the care of a medical consultant, but was being cared for on a surgical ward due to his tracheostomy needs. As such, he was an ‘outlier’ on the ward. He had then been identified as medically fit for discharge, and therefore it appeared there was no-one genuinely ‘leading’ on his physical healthcare needs. Possibly as a consequence, it was clear that different professionals on the ward held and expressed different views on what was required. This was a point Hayden J pushed on repeatedly whilst hearing evidence, highlighting the impact this was having on P and his partner’s understanding of their situation and the medical plans for his care.

Later in the hearing, it was mentioned that P was being cared for on the ward under the auspices of the Mental Health Act 1983; but no reference was made to involvement from mental health professionals in supporting his mood or behaviour. This begged the question in my mind as to how and why his psychological needs appeared to have been so overwhelmingly ignored by mental health provision, apparently being left to the nursing team to work through without a clear formulation. I wondered whether P’s complex psychological needs (which included emotional and cognitive issues as well as self-harming behaviours) had led to an over-shadowing of his ‘normal’ distress in the face of unwelcome healthcare interventions and his right to have an opinion about these. There was a sense that he had been silenced in his care, both literally and metaphorically; I felt distressed reflecting on the many ways that being silenced in this way would be experienced by any person who had been through significant trauma. It was apparent that P’s opinion had not been weighted highly in decisions made about him- if, indeed, any such best interests decisions were in fact needed. At one point Hayden J commented: “Without wishing to put myself in the place of the professionals … I did not feel I was interacting with a man who showed obvious incapacity on the key issues we are dealing with here” (we could see Matron clearly nodding as he said this).

I also wondered if the teams involved had become so paralysed by the complexities that their usual practices had fallen aside. Capacity assessments four months earlier had deemed P to lack capacity to litigate, and to make decisions about care and treatment, but reference was made to this conclusion being somewhat “broad brush” (and it did not seem that there was any capacity evidence relating to the tracheostomy in particular). I wondered whether due consideration had been given during those assessments to the fact that specific decisions in P’s care and treatment would vary greatly in their cognitive complexity, emotional salience, medical necessity and so on. No reference was made at any point to any efforts made by the treating team to support P’s capacity for these decisions. I wondered why it did not appear that anyone was considering whether to re-assess now that P was presenting so very differently. I was relieved at the end of the hearing when Hayden J ordered updated capacity assessments.

Overall, I was struck by what appeared to be a complete absence of a holistic formulation of P’s needs. I noticed how angry I felt about this – the absence of what to me is a basic tenet of quality care for people with complex needs.

The compassion demonstrated by the nursing team working with P, and their persistence in caring for him in the face of complexity, was not enough. Nor was the absolute dedication and support provided by his partner, on which Hayden J repeatedly commented. Their care needs to support from a robust plan in which each involved professional understands the ‘big picture’ and how their involvement with P connects to other aspects of his care. This seems as far from the reality on the ground as could be imagined.

Hayden J expressed similar views, noting that what was needed was to go “back to the drawing board”. The way P had been described to potential care providers was now out of date.

“This is a relatively young man in hospital, showing at long last some resilience to his situation, some real improvements in his weight, his general demeanour is better and the clinical consensus is that although he’s still far from an easy man, he’s unrecognisably milder and more manageable than 9 months ago.” (Hayden J)

What was needed was to start with a “complete blank sheet” and to urgently reassess all of P’s needs and then formulate a care plan to meet them. This would then form the basis for suitable placements to be identified. Mr Justice Hayden advocated for a clinical lead to be appointed to oversee this process, with the aim of P having “…a plan that enables him to take advantage of his own advances…”.

On a few occasions Hayden J appeared to wonder aloud if his expectations (for clinical leadership, multi-disciplinary reviews, and so on) were unrealistic. My first reaction was absolutely not: these are basic principles of effective care and rehabilitation. I then connected with my own experiences of healthcare (as a recipient, carer, clinician, manager) in both NHS and independent sector contexts, acknowledging the frequency with which less than ideal practice occurs. We can so readily move to place the fault with individuals. This is simple, but wrong. Healthcare staff face increasing demand and complexity, in the absence of increased funding and effective systems and processes. These challenges were present before the pandemic, and have been exacerbated by it. The time to properly consider complex issues is increasingly squeezed away. In such rationed contexts, lines are drawn: we will do this, we won’t do that. And into the gaps between these lines can fall people like P.

Holding these reflections in mind, I welcomed Hayden J’s comments that the hearing had been “in some ways quite a disturbing experience”. It was reassuring to me that those who hear such stories regularly are not immune to the emotions they evoke. He noted that he would not be making criticisms in a written judgment at this point, as he wished to keep the focus on P’s needs, but this would certainly not preclude him from doing so in future.

The skill with which Hayden J communicated with all parties, highlighting weaknesses to be addressed without meandering into unnecessarily assigning blame, such that all parties could remain focused on P, was remarkable to witness. In effect, he modelled the role that the proposed clinical lead would need to take. Nevertheless, it seemed clear he would not countenance any further lack of action on the part of the healthcare provider. I left the hearing with a profound sense of gratitude that there are those who will advocate with absolute clarity for the rights of P to be respected, and to promote his quality of life going forwards.

Dr Gaby Parker is a Consultant Clinical Neuropsychologist with Central London Community Healthcare NHS Trust, and has an independent medicolegal practice with Allied Neuro Therapy Ltd. She has a specialist interest in complex interdisciplinary community neurorehabilitation and mental capacity following acquired brain injuries. She tweets @gabyvparker

^[1] It is acknowledged that many people with lived experience and/or who practice within mental health fields disagree with the use of ‘personality disorder’ to describe psychological experiences. It is included here as this was the term used during the hearing. For further commentary on the use of ‘personality disorder’ within the COP, see Keir Harding’s contribution to the Open Justice blog: What does the Court of Protection need to know about “borderline personality disorder”? – Promoting Open Justice in the Court of Protection (openjusticecourtofprotection.org)

^[2] We are not permitted to audio-record hearings, so quotations are based on notes taken at the time and are unlikely to be verbatim. They are as close as possible to what was said. My thanks to Celia Kitzinger who supplied these direct quotes.

Image by Hans-Peter Gauster via Unsplash

Keeping Mum in her own home: Deprivation of Liberty and Powers of Attorney for health and welfare

By Celia Kitzinger, 28th June 2021

Update: I’m informed that the next hearing for this case (previously listed for 2nd July 2021) has now been vacated, and is re-listed for 4th August 2021 at 3pm. We will post information about how to observe on our home page in due course.

Most of the hearings we blog about originate from judges who are based either in the Royal Courts of Justice, or in First Avenue House in London. It’s much harder to observe hearings in the regional courts.

It’s more difficult to find out about the hearings (it takes trawling through CourtServe) and it can also be challenging to gain access, not least because judges in the regions – especially District Judges – seem to be less well supported administratively. We’ve found that emails sometimes don’t get forwarded to the judge, and even when they do, the time it takes to add yet another person to a conference call can sometimes be just too much of a burden.

So, I was pleased to be granted access to a telephone hearing before District Judge Stone in the County Court at Barrow in Furness at 3.00pm on 7^th June 2021. I chose this particular case (COP 13759851) because it’s in Cumbria, where I live – and also because (unusually for CourtServe listings) the entry included the issues to be addressed: “Welfare – Residence & Care”.

I received a response to my emailed request, sent to the Manchester hub, within two minutes (!) from a member of the court staff who said, “No worries I will just send this request over to the local court.” Twenty minutes later, I was sent an email from Barrow County Court, attaching something that purported to be a transparency order (it was actually a remote hearings order) and asking me to confirm my telephone number. At 3.10pm the phone rang, and DJ Stone welcomed me to the hearing.

The hearing

It was (as most hearings I observe are) a directions hearing, i.e. a hearing for the judge to review the case and consider whether there needs to be further information or action taken by the parties, before a final hearing at which the judge makes a final decision based on all the evidence, reports and all the points put forward by both parties. (For more information on types of hearing see this Guide.). I’m pretty sure, from what I heard, that this was the first ever court hearing about this case.

It concerned a person (P) with dementia, of whom the representative for the local authority (I think a solicitor, rather than a barrister) said: “the dementia is quite advanced and there’s no capacity at all with this lady”.

She lives at home and is cared for (via direct payments) largely by her daughters (and, I think it was said) her next-door neighbour. They spend a lot of time at P’s home.

The local authority has brought this case to court because they have recently become aware of the “restrictions” that P is subject to. Due to her dementia, she is unsafe leaving the home alone, and there have been real concerns in the past when she’s gone out and then “been found in circumstances that could have been very detrimental” (judge). So, the doors of P’s house are locked and she cannot leave on her own. Cameras have been set up inside the home too, again with the aim of keeping her safe.

This, said the representative for the local authority, amounts to a deprivation of liberty following the Cheshire West ruling: i.e. P is under continuous supervision and control and she is not free to leave the place in which she is residing.

The local authority representative appreciated that the motives of the daughters were to “facilitate P’s independence”: “They are trying to do the right thing by having this lady live in her own home as long as possible”. Later she reiterated, “They are doing everything they can to keep Mum in her own home”.

But they were concerned that this arrangement may not constitute the least restrictive option for P. Also, they had asked the daughters what ‘emergency plan’ was in place in the event that P needed to leave her home quickly (e.g. fire) and the answer was “not forthcoming”. They reported a “lack of information from the family”.

Both daughters had confirmed that they didn’t want to attend the hearing or be joined as parties – despite holding Lasting Power of Attorney for both financial decisions and for health and welfare. The local authority representative expressed the view that they would prefer the attorney-daughters to be parties “to make joint working easier”.

The judge said that “Family members are clearly doing their best to ensure P can remain in her own home, given the distress they believe she would feel if forced to move to other accommodation. But they have set up a situation that may amount to a deprivation of liberty, and so it is necessary for the court to obtain full information”.

The judge made an interim order (s. 48 MCA 2005) that there was reason to believe that P lacks capacity to litigate and to make her own decision about where to live. A social worker was present in court and I believe she had assessed P’s capacity and completed a “COP 3”.

The judge also made directions inviting the Official Solicitor to act as P’s litigation friend. The representative from the local authority remarked that “the last request for the Official Solicitor got lost in London”, leading to some discussion as to how to ensure that the matter is dealt with efficiently this time.

The judge said that the “current care arrangements can continue until further consideration of the evidence” and listed another hearing on Monday 28^th June at 11.30am, via BT MeetMe, for one hour and 30 minutes. He emphasised that the case was “urgent” and that a decision could not be delayed.

Before that hearing, there is supposed to be a roundtable meeting, and “a continued invitation to the daughters to attend the hearing, so they can understand the decisions the court is being asked to make on behalf of their mother”.

A personal reflection

If I were to lose capacity in the future, I want someone who knows me well to be the designated decision-maker. For me, this would be self-evidently preferable to decisions made by Court of Protection judges who don’t know me, my values, the way I’ve lived my life and the things that matter to me. And so I have appointed my wife and (if she is unavailable to act) my sister with Lasting Powers of Attorney for Health and Welfare. They know my wishes and beliefs very well, and would weigh them heavily in any best interests decision they had to make about me.

Also, several family members have chosen me to act as their attorney for health and welfare if they were to lose capacity to make their own decisions.

So I was alert in this case to the apparent limits of the daughters’ powers, as attorneys, to make the decision to deprive their mother of her liberty in her own home. This has implications for anyone who has appointed someone to act as their attorney and/or is the designated attorney for someone else.

The court did not actually explicitly discuss the relationship between Lasting Power of Attorney and Deprivation of Liberty – but it was clear that the judge took for granted that decisions concerning deprivation of liberty (like locked doors and cameras in the home) were decisions that properly fell to him, and not to the daughter-attorneys.

I did some research to find out more about this after the hearing, and I’m still not entirely clear about why or how the decision-making powers of attorneys are restricted in relation to deprivation of liberty – although it’s clear that they are.

So, even if someone has given me clear and strongly-worded directions that I am to keep them out of a care home at all costs – which might include locking them inside their home and using video-cameras to keep them safe – I gathered from this hearing that I’m probably not able to do that without the Court of Protection getting involved.

The ever-helpful Alex Ruck Keene explains it like this:

“… it is important to note that it is not possible for a donor to ‘opt out’ of DOLS by providing that an attorney can consent on their behalf to the deprivation of liberty, and any attempt to include such a provision in the instrument is likely to end up being struck out upon the Public Guardian’s application to the Court of Protection (see the unreported decision of Senior Judge Lush in Re Stewart). So even if the attorney considers that the arrangements are in the person’s best interests, and what the person would have wished, this does not obviate the need for the DOLS authorisation procedure to be invoked. The courts have not decided whether the ‘substituted consent’ of an attorney would also obviate the need for an application to the Court of Protection in the context of a deprivation of liberty taking place outside a care home or hospital, but the decision in Birmingham City Council v D would suggest that a court would approach such a proposition with considerable caution.” (Alex Ruck Keene, “Powers of attorney, care homes, best interests and deprivation of liberty”, March 7^th 2016, Mental Capacity Law and Policy Blog)

This hearing prompted the realisation that it would probably be helpful to the person I have appointed as my own attorney to have something in writing from me, making clear my current (capacitous) views on the matter of depriving me of my liberty. So. I have now written a short piece expressing my values, wishes, feelings and beliefs about a possible incapacitous future in an institutional setting vs. in my own home. If my attorney is required to contribute to best interests decisions about where I should live and/or whether I should be deprived of my liberty, she will need to show that she is taking into account my own views on the matter: a record of my position on the weight I give to being safe and protected, vs. being free and at risk of harm would (I hope) help to support the decision-making process. I have also requested the people for whom I might find myself acting as attorney in the future to do likewise.

Meanwhile, I look forward to the next hearing in this case.

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

Photo by phil cruz on Unsplash

“You can’t ask the High Court to turn a blind eye to illegal detention”

By Claire Martin, 25th June 2021

A man with Alzheimer’s disease, FS, was living with, and being cared for by, his daughter until mid-April this year when he “became poorly” and was admitted to hospital for treatment.

A few weeks later, when he was ready for discharge from hospital, on 12^th May 2021, the professionals held a best interests meeting (not attended by FS’s daughter) and decided that he needed to go to a care home. That’s where he’s been living for the last four weeks.

His daughter does not agree with this decision. She wants him to return home, where she’ll be the primary carer, with some help from professional carers.

He’s still in the care home without (at the time of the hearing) a standard authorisation for the deprivation of his liberty.

FS’s daughter made an application to court to get her father home again, and the first hearing of her case (COP 13751629 ) was before Mrs Justice Lieven on Monday 7^th June 2021 via MS Teams. It lasted for about an hour.

The hearing

The applicant, the daughter, had succeeded (eventually) in getting legal aid and was represented at this hearing by barrister Ben McCormack. The Local Authority was represented by Emma Waldron.

Normally, when there is a disagreement about where someone should live, and an argument that the person is unlawfully deprived of their liberty, the case comes before the court as a s.21A application. But in this case the daughter couldn’t make a s21A application (challenging a DoLS Standard Authorisation) because no standard authorisation had been made!

There were various problems with the organisation of this hearing: there were no position statements, and an order had gone astray, so neither the CCG nor FS himself were represented at this hearing. Clearly, the decision about where FS should live would have to be delayed (“I am not going to be able to safely discharge FS today” said the judge).

There was a suggestion that the whole thing could be sorted outside of court. It seemed that Mrs Justice Lieven hoped initially to avoid what she called “a massive piece of litigation”, saying “we may be able to cut through this … and can just get FS back home with his daughter and a support package”. Addressing Emma Waldron, she asked:

“What triggered all of this? [Daughter] was looking after [FS] for years – with no concerns. I understand there were some relatively standard tensions to do with COVID and tensions between professional carers and the daughter. But it all seems to have escalated in ways I don’t understand. The obvious thing when he was fit to be discharged was for him to go home with a care package. Why didn’t that happen?”

Nobody seemed to know the answer to that question. Counsel for the LA, Emma Waldron said:

“I am not in a position to answer that. I need a witness statement from the Social Worker. There is some suggestion that [FS’s] needs had changed.”

Later she added:

“The LA hasn’t had a significant amount of time to consider. … There has been no proper assessment of [FS’s] current needs. He is awaiting a CHC [Continuing Health Care] assessment via the CCG [Clinical Commissioning Group] – then the LA can conduct their own assessments.”

So, it’s not at all clear how this situation has arisen.

At another point in the hearing Mrs Justice Lieven described it as “a pretty minor falling out that has led to a quite inappropriate level of legalisation”.

“This seems an inappropriate escalation. I would so much rather the money the Local Authorities spend on barristers and solicitors in cases like this, got spent on the care of elderly people! Think how many care workers could be paid with what a half-day hearing in the High Court costs!”

In the meantime, as Ben McCormack starkly reminded the court:

“All parties agree that [FS] is deprived of his liberty in the care home There is no authorisation in place at present. As we sit here today, he’s unlawfully deprived of his liberty.”

The judge asked whether FS’s daughter had been able to see her father at the care home:

Ben McCormack: No, she’s very nervous about the position she’s been put in – all of a sudden, after many years of caring for her dad, then suddenly safeguarding alerts. A cloud of suspicion has been placed over her and she’s not sure what that cloud of suspicion contains.

Given that there is no standard authorisation for deprivation of liberty in place, there’s nothing – in principle – to stop FS from leaving. As the judge said to counsel for the daughter: “If they don’t issue a standard authorisation, your client is legally and morally within her rights to walk in and say ‘okay Dad, let’s go home’”. She noted that FS’s daughter had been very reasonable and “sensible” in that she “hasn’t tried to walk in and grab the wheelchair and take him home”.

But, she added, “the LA needs to decide very quickly whether or not to make a standard authorisation”. Turning to counsel for the LA she said, “You really need to do something about this standard authorisation, don’t you. You’re wide open to a deprivation of liberty claim”.

Emma Waldron stated that the LA was aware of this and it “was being looked at as a matter of urgency”.

Judge: You have to do better than that. You can’t ask the High Court to turn a blind eye to illegal detention. If this was an immigration case, I would be letting him out now. You can’t unlawfully detain people in the UK. You’ve got four days to sort this out. If the situation is that he should just go home – then just do it. I’m not going to order you to do it because I haven’t got the evidence.” [Judge’s emphases]

Judge (addressing Ben McCormack): “At 4pm on 10^th June – if you’ve not got the standard authorisation, I will set him free. You can’t just exist in this extraordinary world where he’s being deprived of his liberty but no one seems to care very much. Just because he’s old and infirm does not mean you can deprive him of his liberty!”

On behalf of FS’s daughter, Ben McCormack asked for a “tight timetable” moving forwards. Given that a needs assessment was required, and the Official Solicitor needed to be engaged to act on behalf of FS, the next hearing would be not next week, as the judge initially hoped (“to bang some heads together”), but the following week, on 24^th June. Unless, of course, it is resolved out of court as HHJ Lieven would prefer. It did not appear on the court listings for 24^thJune 2021.

Reflections

This was a disturbing case with powerful comments from judge. As she stated: “Just because he’s old and infirm does not mean you can deprive him of his liberty.” This seems to be what had happened. I did wonder whether the care teams were not discussing their concerns about his needs and care with FS’ daughter: how could it have come to this, where she did not understand why she was under a ‘cloud of suspicion’?

Mrs Justice Lieven is a wonderfully plain-speaking judge and she made her views about this case very clear. She was remarkably straight-talking in her assessment of how this case had even reached court. She was clearly unimpressed with how the public bodies had conducted, and continued to conduct, themselves.

Best interests meeting without daughter

I was shocked that the best interests (or ‘professionals’) meeting, and subsequent transfer of FS to a care home had happened without the inclusion of his daughter (his main carer), as required by the Mental Capacity Act 2005 s4(7) when deciding someone’s best interests. She was at the hearing with her solicitor and was clearly fully engaged in her father’s care. It wasn’t discussed at the hearing why she had not been involved in these decisions.

No Standard Authorisation for Deprivation of Liberty

Care systems are so familiar now with Deprivation of Liberty Safeguards requirements, and the Court of Protection is open 24 hours a day, 365 days a year for emergency applications. Someone (or some people), somewhere, must have decided to prevent FS from returning home without following the legal procedure.

They might have had serious concerns about him returning home, though the Judge didn’t appear to think that anything sinister was going on with the daughter’s care of FS.

It felt as if this was happening to FS simply because it could. This is really worrying. If FS’ daughter had not responded in the way she had, would FS remain unlawfully deprived of his liberty now? Would other, less restrictive, options remain unconsidered? It made me wonder how often this situation might happen – I have no idea, but if the only ones shouting about it are relatives who are not happy, then it means that many professionals remain silent when they must know that the law is not being followed. Is this a resourcing issue? Professionals with too high a workload leading to mistakes and oversight, rather than deliberate over-riding of legal procedure? For FS though, it was a fact that his daughter had questioned the decision and so the issue was evident to the professionals involved. It feels like a parlous state of affairs.

Causing harm?

There are many questions bouncing around about this. We didn’t have any evidence from the public bodies about their decision-making process regarding FS’ care needs. Notwithstanding the illegal detention aspect of FS’s care, it was impossible at this hearing to form a picture of his needs, concerns about, and options for, his care. As noted though, the judge did not express any concerns about the quality of care FS’s daughter provided – comments relating to living at home focused on needing additional carer support.

If it was the situation that the care teams had simply run out of time to complete their assessments, rather than having clear evidence of a change in FS’s needs such that they could not be met at home) then the decision taken to move him to another, unfamiliar, environment risked a traumatic process for FS that could have caused further, iatrogenic, harm.

Did the hospital or Local Authority demonstrate that they had understood, retained and weighed up the costs/benefits of a decision of a further move, to a care home, for a man with dementia versus returning to his home? Is any balancing documented, with consideration that a second change of environment could be detrimental, physically and psychologically, for him? Could any assessments required have been completed within his home environment (arguably an optimal setting, regarding familiarity and comfort), therefore representing a less restrictive option?

It is known that a move of environment for people with dementia can bring unintended, adverse consequences. This literature review from The Gerontologist in 2019 [Health Effects of the Relocation of Patients with Dementia: A Scoping Review to Inform Medical and Policy Decision-Making] states:

“The effects of relocation were discussed in terms of mortality and morbidity. In most studies, the health effects of the relocation of older adults suffering from dementia were negative. A decline in physical, mental, behavioral [sic.], and functional well-being was reported. The most recurring effect was a higher level of stress, which is more problematic for patients with dementia. In general, unless it is carefully planned, it is best to avoid changing lives of people with dementia and it is recommended to actively work to reduce their exposure to stress.”

NICE guidelines for hospital care for people with dementia acknowledge that:

“Hospital admission can trigger distress, confusion and delirium for someone with dementia. This can contribute to a decline in functioning and a reduced ability to return home to independent living. Over recent years there have been a range of initiatives on improving the experience and outcomes of hospital care for people with dementia, such as the National Dementia Action Alliance and Dementia Friendly Hospitals Charter”

And further NICE guidelines regarding discharge from hospital for people with dementia state:

“1.5.10 Ensure continuity of care for people being transferred from hospital, particularly older people who may be confused or who have dementia. For more information on continuity of care see the recommendations in section 1.4 of NICE’s guideline on patient experience in adult NHS services.”

So, it is known that a change of environment can have deleterious effects for people with dementia. Is it possible that a ‘change in [FS’s] needs’ could have been occasioned by the fact that he had been in hospital? And that a return home, to a familiar environment within the relational space of being cared for by someone who loves him, might have been helpfulwith the assessment of his potentially changing needs? I am speculating here – but we had no information of the actual concerns about FS returning home.

In the absence of any serious safeguarding concerns that explain what happened, this looks like a situation where the ‘system’ has, probably little by little, in a mission creep process, occupied an unreflective ‘doing to’ role in relation to FS and his daughter. People perhaps hadn’t reckoned on his daughter’s tenacity. Though it’s probably more likely that they didn’t really think they were doing anything wrong – ‘best interests’ as in ‘what I think is best’, in a theoretical, ‘objective’ way, rather than a legal (and inclusive) process following ‘what is best, least restrictive option, for this person, given how they have lived their life, their values and relationships’.

Claire Martin is 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

Urgency, delayed decision-making and ethics in the Court of Protection

By Dominic Wilkinson, 24th June 2021

On 11^th June 2021, I was a public observer (via MS Teams) of a case in the Court of Protection: Case No. 1375980T Re GU (also blogged about by Jenny Kitzinger here).

The case was (though I did not know it beforehand) related closely to issues that I have written about over a number of years (for example here, here, here ). It was an urgent hearing before Mr Justice Hayden concerning clinically-assisted nutrition and hydration (CANH) for a 70 year old man, GU, who has been in a prolonged disorder of consciousness for seven years.

I have read the judgments from many similar cases in the UK, from the first ever case concerning a feeding tube for a vegetative patient heard in (what is now) the Supreme Court in 1992 (the case of Tony Bland, injured in the Hillsborough football stadium disaster), through to the most recent Supreme Court case of Re. Y, at which the court ruled that it is not mandatory to bring cases concerning CANH-withdrawal to court unless there is disagreement about best interests, or the decision is finely balanced (report here). I’m also familiar with the judgments in other jurisdictions (e.g. Schiavo in the USA, Lambert in France) and have been involved in deliberation in clinical ethics committees about cases with similar features.

Yet, this was my first time hearing open deliberations in the Court of Protection. It was a fascinating and thought-provoking experience.

Background: The case of GU

Right at the start of the hearing, the court heard the moving and tragic story of the events leading up to this point. Seven years previously, GU had been electrocuted while cleaning a pond in his home overseas. Dragged out of the water and rushed by car to a hospital some distance away, GU had suffered a cardiac arrest and severe hypoxic brain injury. He was repatriated to the UK, and has remained ever since in a specialised rehabilitation facility and nursing home.

GU has been stable for many years. His doctors agree that he remains in a permanent vegetative state and will not improve. Three years ago, after reading about the Re Y case, some of GU’s family expressed a view to his treating doctors that the treatment keeping him alive (clinically-assisted nutrition and hydration) should be withdrawn. However, the doctors were aware that one family member did not agree to this – which under the Re Y ruling would mean a mandatory court hearing. The hospital did not host a best interests meeting, and nor was any application to the court made.

Three years later, the Clinical Commissioning Group brought the case to the Court of Protection for an urgent hearing.

The central ethical issues in this case relate to two relatively familiar questions. First, is it in the best interests of a patient in a prolonged vegetative state to continue life-prolonging treatment (where there is evidence that they would not have wished to be maintained in such a state?) Second, is it permissible to withdraw clinically-assisted nutrition and hydration, anticipating that the patient will die as a consequence?

These ethical questions are settled in UK law as general principles. As they related to GU in particular, the answers were reached relatively quickly: no, it was not in his interests, yes it was permissible. But I will focus for most of this blog on a different issue, raised right at the start of the hearing, and recurring throughout. Where such questions arise for a patient in a prolonged disorder of consciousness, is it urgent that they are heard and decisions reached by the court, and if so, why?

Urgency

At the start of this hearing Mr Justice Hayden noted that he was hearing the case on the urgent and emergency applications list. There is usually a relatively long wait for cases to be heard in the Court of Protection, often a matter of several months. But it is possible to apply for an emergency order if “it is a serious matter with an unavoidable time limit”. For example, that can relate to urgent life and death decisions. On the morning of the first day, Mr Justice Hayden indicated that the circumstances were so urgent that not only did he plan to hear the case on the emergency list as a ‘final’ hearing and not simply as a ‘directions’ hearing (as it was listed), but he would, if possible, aim to reach a conclusion on the same day. (In the event, he delivered his judgment the next day.)

One of reasons given for aiming for a speedy determination of the issues was the impression that there had been undue delay at a prior stage in applying for a court determination of GU’s best interests. There was a strong suggestion by one of the expert witnesses, Professor Wade, that “there had been an inordinate delay” and that there should have been an application to the court three years earlier. In fact, it seemed that the lack of appropriate urgency at an earlier stage was a significant factor in the perceived urgency of reaching a decision now. Mr Justice Hayden noted that “one day more is one day too many”.

One reason that some might be puzzled by the urgent nature of the hearing is that GU’s clinical state is completely static. His condition this month is the same as a month ago, as six months ago, as two years ago. Not only that, but given GU’s diagnosis of the most severe form of prolonged disorder of consciousness, there was little or no suspicion that he was perceiving any pain or discomfort (though this could also not be ruled out).

At the start of the hearing, Mr Justice Hayden remarked that “It is sometimes implied that if a patient is in a vegetative state (rather than some higher level of consciousness) it does not matter if there is a delay”. However, he rejected that view. Speaking to the brother and son of GU (who had different views about GU’s treatment), Mr Justice Hayden was keen to separate the question of the urgency of the decision from the actual decision itself. He suggested that whatever decision was reached by the court, whether to continue or to discontinue treatment, it was in GU’s best interests to reach that decision urgently.

It is relatively obvious why that might be the case if treatment were not in GU’s interests. It could be a harm to GU to prolong his life. Moreover, that harm could be aggravated by delay.

But on the other hand, if it is in GU’s interests that treatment continue, it does not seem in any way urgent (for GU’s sake) to formally reach a best interests decision that confirms that. After all, in that case nothing about GU’s treatment would change.

So, one concern might be that perceived urgency in cases like this is not independent of the conclusion. Where there are different views, potentially only one side has reason to have the case heard urgently. (Indeed, in some situations those parties who are advocating continued treatment may have reason to want the case to be delayed, in case the decision goes against them (this did not appear to particularly apply to GU)).

There are, however, two ‘independent’ or neutral reasons in favour of urgency. We can apply these reasons without having to (or before having to) take a side in the dispute about treatment.

One reason is in terms of an asymmetry of harms. As noted above, if treatment should be stopped, delay is a harm. If treatment should not be stopped, an early decision is not a harm. Because of that, the least harmful approach is to aim for earlier decisions if possible. (One important practical consideration is that there can be greater uncertainty early after an acute brain injury. Sufficient time may need to have passed in order to assess whether the patient will improve and to gather information to be confident of their clinical state – for example the level of severity of their prolonged disorder of consciousness). That obviously did not apply to GU, since three years ago (and potentially as long ago as 6 years ago) ample time had passed since his original event.

The second independent reason is on the basis of family wellbeing, and the deleterious consequences of prolonged disagreement. In GU’s case, it was clear that the one dissenting family member (GU’s son) had found his relationship with the rest of the extended family seriously damaged as a result of their disagreement. Mr Justice Hayden was at pains to express a hope that reaching a best interests decision for GU would enable the rifts within the family to begin to heal. If we assume that in most cases patients will not want their family to be fighting, it would potentially be in a patient’s best interests to have any disagreements over their treatment resolved as quickly as possible.

Harm, dignity and autonomy

These two reasons suggest that it would be better to reach a decision sooner rather than later. That was the basis for Mr Justice Hayden’s concern about the delay in decision-making for GU. At one point, the expert witness expressed a view that the Hospital had chosen to “put their head in the sand” rather than confront the question of GU’s best interests and potential withdrawal of clinically-assisted nutrition and hydration.

But as an ethicist, I was interested to hear some of the discussion about why it was bad for GU to have been treated with clinically-assisted nutrition and hydration for a prolonged period.

One reason that was given was because it was possible that GU was suffering pain. There was some discussion about the evidence of awareness of pain in the vegetative state. The general consensus was that P was unlikely to be aware of pain or discomfort. However, this remained a small possibility.

An important reason cited was that continued treatment was contrary to GU’s autonomy. According to the Official Solicitor, there was “unanimity of evidence” that GU would not have wanted to be in this state, and as a consequence it was “an affront to his autonomy and dignity” to continue treatment.

As the previous quote indicates, it was further claimed that this was contrary to GU’s “dignity”. If treatment was not in GU’s interests and was merely prolonging GU’s death it was suggested by Mr Justice Hayden that “many would consider that a compromise of …[GU’s] dignity”.

Finally, it was suggested that a compromise of GU’s dignity constituted “a harm”. There was discussion in the hearing about the oft-cited principle of medical ethics “do no harm”, and therefore the implication that continued treatment of GU was contrary to this principle.

What was interesting about this discussion from an ethical point of view is that three different ethical concepts were referred to as grounding concern about prolonged (unwanted) treatment: “autonomy”, “dignity”, “harm”. They were cited as though the different words gave extra weight to the wrongness of what had been done to GU. This, and that, and this other thing. Three different reasons for concern. And yet it was not clear (to me) that they were referring to separate elements. Rather, they all seemed to be dependent on the single central ethical consideration – which was that GU would not have wanted to live in his current state.

Some of the deployment of these concepts appeared at times paradoxical. For example, there was recurrent suggestion that GU’s dignity had been compromised by the delay. And yet, Mr Justice Hayden was also at pains to note that GU’s general nursing and care at his long-term nursing facility had been of the highest quality. He said that GU “had been living in dignity”. So, was dignity preserved or not?

Ethics in the court of protection

One of the most interesting elements to me was the extent of the debate about primarily ethical questions in this hearing. There was in fact, relatively little discussion or debate about questions of law. That may have reflected the fact that this hearing did not raise any new questions of law, and the lawyers present (representing the clinical commissioning group and GU via the Official Solicitor) were in agreement. The disagreement was coming from one family member who was an ‘interested party’, but was unrepresented.

But to the extent that ethical questions and concepts were central to the hearing, it also seemed that there would have been value in having some specific ethical expertise available. Such expertise isn’t (primarily) about identifying the right answer to what should happen for the person at the centre of the case. Instead, it would draw on the skills that are relevant to clinical ethics in committees or on the wards: clarifying concepts, identifying and weighing relevant considerations and arguments, making important distinctions, deploying thought experiments, drawing on debate and academic literature. For example, a clinical ethicist in this case might have been able to identify the strength of the arguments relating to the urgency of obtaining a best interests determination in cases like that of GU. They might have drawn attention to the value of clarifying and distinguishing concepts like harm, autonomy and dignity. They would also have been able to provide some insight into the relevance of ‘do no harm’ in such cases.

Academic and clinical ethicists, from the sidelines, have long debated questions relating to medical treatment for patients who are unable to decide for themselves. In England and Wales, they haven’t, or only extremely rarely, been called as expert witnesses. Yet ethics is obviously central to the work of the Court of Protection. And if this hearing is anything to go by, if judges or barristers were willing to call on them, it seems that there could be a place for an ethicist in the courtroom.

Dominic Wilkinson is a Consultant Neonatologist and Professor of Medical Ethics based at the Oxford Uehiro Centre for Practical Ethics He tweets @Neonatalethics

Photo by Ahmad Dirini on Unsplash

Resolving End-of-Life Treatment Conflicts: Comparing the COP in England to Analogous Mechanisms in Ontario, California, and Texas

By Thaddeus Mason Pope, 23rd June 2021

On Friday June 11 2021, I had the pleasure of watching The Honorable Mr. Justice Hayden deliver judgment in a Court of Protection case involving the withdrawal of life-sustaining treatment. I have been reading Court of Protection judgments for years and have even collected many on my website. But this was my first opportunity to see and hear a senior COP judge. I am grateful to Celia Kitzinger both for helping to raise awareness of the publicly accessible nature of COP hearings and for informing me of this specific proceeding.

I am a law professor based in the United States, though I am presently the Fulbright Canada Research Chair in Health Law, Policy, and Ethics at the University of Ottawa. I have been writing and consulting on end-of-life treatment conflicts for over a decade. Therefore, I want to compare the Court of Protection to analogous dispute resolution mechanisms in Canada and the United States.

All three mechanisms resolve the small subset of conflicts that are intractable to informal and intramural processes such as mediation and clinical ethics consultation. And while all three mechanisms adjudicate issues other than end-of-life treatment disputes, these may be the most consequential type of case. Below, I compare how each mechanism affords procedural due process in terms of (1) neutrality, (2) transparency, and (3) competence.

Case No. 1375980T before Mr. Justice Hayden on 10^th – 11^th June 2021

While emotionally fraught, the case at issue did not appear legally complicated. The patient, GU, was an incapacitated 70-year-old man. On 14^th April 2014, the former pilot had suffered a catastrophic hypoxic brain injury after accidentally electrocuting himself in his garden pond. He has been completely unconscious and unable to interact with his environment ever since. No party disputed that the patient would not have wanted to live in this condition. None of his family believed that he would wish to continue to live in his current situation.

The primary issue in this case concerned one specific form of life-sustaining treatment: clinically assisted nutrition and hydration (CANH). The patient’s wife, siblings and children all agreed that it is not in GU’s best interests to continue to provide him with CANH. But GU’s son disagreed. He did not want his father to die from dehydration.

Mr. Justice Hayden ultimately sided with the brother and against the son, ruling that life-sustaining treatment was not in the patient’s best interests and should be withdrawn. But the judge did this only after thoroughly explaining and acknowledging the son’s perspective. Because the lawyers were transcribing his judgment, Mr. Justice Hayden spoke with the slow pace and distinct enunciation of former U.S. President Barak Obama. But this has the perhaps unintended effect of permitting public observers to follow easily. And Mr. Justice Hayden spoke directly to the patient’s son, demonstrating that he had carefully considered the son’s concerns.

Neutrality of Decision Maker

The central element of procedural due process is the independence and neutrality of the decision maker. It is unfair to have a conflict adjudicated by someone who either has a stake in the outcome or has a relationship with one of the parties. The Court of Protection earns top scores on this aspect of procedural due process. Mr. Justice Hayden, like all COP judges has no relationship with the patient, the patient’s family, or the hospital.

The key Canadian analog to the Court of Protection, the Consent and Capacity Board also scores well on this element of procedural due process. In Ontario, conflicts over life-sustaining treatment are often brought to the CCB, a specialized quasi-judicial administrative tribunal. Cases are heard by three member panels: a lawyer, a psychiatrist, and a public member. All members are independent from the parties.

In contrast to the COP and CCB, in California and Texas, intractable end-of-life treatment conflicts are typically adjudicated by hospital ethics committees or medical appropriateness review committees rather than by a court or quasi-judicial tribunal. Coincidentally, I participated as a voting member on such a committee on the same day that I observed the COP hearing. Most or all members of hospital ethics committees are employed by or otherwise affiliated with the same hospital that is treating the patient. These committee members are not neutral and independent. Indeed, a massive 150-page appellate decision recently challenged the legitimacy of these committees for this reason.

Transparency of Proceedings and Judgment

Like neutrality, transparency is a core element of procedural due process. The Court of Protection operates in an admirably open and transparent manner. First, the proceedings themselves are open to the public, and have regularly attracted Public Observers since the pandemic forced hearings to be held remotely (rather than solely in court buildings) and led to the forming of the Open Justice Court of Protection Project. Hearings before Mr. Justice Hayden are especially well attended by Observers. Second, Mr. Justice Hayden carefully, lucidly, and compassionately explained the reasons for his decision not only to the parties but also to the public observers. Third, Mr. Justice Hayden will later publish a written version of the judgment he delivered orally. This is typical. The Court of Protection regularly prepares written judgments offering reasoning and justification for decisions, and these are publicly available on BAILII.

The Ontario CCB is somewhat less open and transparent than the COP. While the CCB publishes written decisions that are publicly available on CANLII, its evidence gathering proceedings are not open to the public. But starkly different from both the COP and CCB, hospital ethics committees in California and Texas operate with the least openness and transparency. No aspect of their proceedings is observable by the public. Nor do hospital ethics committees prepare written decisions that are publicly available. Moreover, while the parties may get a letter explaining the committee’s decision, these are typically only a single page, offering far less reasoning and explanation than the COP or CCB. While some level of secrecy may be required by U.S. healthcare privacy laws, there is not even a database of redacted anonymized decisions. And while COP and CCB judgments are regularly reviewed by appellate tribunals, hospital ethics committee judgments are almost never judicially reviewed.

Competence of Decision Maker

The Honorable Mr. Justice Hayden is an experienced professional judge. This was apparent in his formal and eloquent manner. Moreover, the Court of Protection has extensive rules for evidentiary submissions, arguments, and other matters. These assure that the matter is carefully and fairly investigated, explored, and assessed.

Still, some of what I observed is surely specific to Mr. Justice Hayden. He visited the patient in person early on the morning after the main body of the hearing and before delivering his judgment. Mr. Justice Hayden did this even though the patient was unconscious and unable to participate in the proceedings. And he described the scene as if he were writing a novel or painting a picture. Mr. Justice Hayden colorfully described the patient’s room, the garden below, and the nurses caring for the patient. He apparently did this for the benefit of family who live in various countries around the world, unable to visit the patient because of the pandemic. Mr. Justice Hayden clearly paused to absorb and reflect on the incapacitated patient whom he was charged with protecting. This helped convey how seriously the judge approaches his solemn task.

While the members of Ontario CCB panels are not professional judges, they are vetted and trained. And like the COP, the CCB also operates under rules of practice. In contrast, hospital ethics committees in California and Texas are comprised primarily or entirely of clinicians at the hospital. They receive little or no training in dispute resolution. And there are no rules that dictate substantive or procedural standards. Consequently, hospital ethics committees are unconstrained both in how they run the proceedings and in how they reach decisions.

Conclusion

I am grateful to the Open Justice Court of Protection Project for making it possible for me (an American in Ottawa) to be a public observer in the (virtual) court. I have a deepened respect for the COP and will help other jurisdictions view it as a model dispute resolution mechanism.

Thaddeus Mason Pope is a law professor at Mitchell Hamline School of Law in Minnesota USA. He is currently the Fulbright Canada Research Chair in Health Law, Policy, and Ethics at the University of Ottawa. He tweets @ThaddeusPope.

Photo by Macu ic on Unsplash

Clinically-assisted nutrition and hydration: Decisions that cannot be ignored or delayed

By Jenny Kitzinger, 23^rd June 2021

Hearings in the Court of Protection often bring crucial issues into sharp relief in a vivid, poignant and intellectually rigorous way.

This was certainly so in the hearing I observed last week: Case No. 1375980T on 10 June 2021. It concerned GU, a 70-year-old man who sustained a severe anoxic brain injury in April 2014 following electrocution, a cardiac arrest and possible drowning. He has been unconscious ever since and there is no prospect of recovery. His wife, siblings and adult children all agree he would not want to live like this. All but one family member – the patient’s eldest son – believe that clinically-assisted nutrition and hydration (CANH) should be stopped.

The application to address whether or not continuing CANH was in GU’s best interests was brought by the Clinical Commissioning Group that commissions GU’s care (represented in court by barrister Mungo Wenban-Smith of 39 Essex Chambers). Two of GU’s family members (his brother and his eldest son) were also in court as litigants in person. GU himself was represented by the Official Solicitor (the barrister was Debra Powell QC of Serjeants’ Inn). Unusually, the hospital where GU has been treated since September 2014 was not in court and was not the applicant in this case.

Originally, the hearing on the 10^th June was scheduled as a one-hour directions hearing. However, Mr Justice Hayden, noted that even a cursory glance at the paperwork had led him to consider that the case was “ready to be heard and had been for some time”. Because “delay can be inimical to the welfare and best interests of a protected party” he wanted to move to a full hearing immediately. The priority given to this, and the flexibility of the Court of Protection and everyone involved, was illustrated by the rapid move to clear diaries and rearrange plans.

Once the full hearing was convened, the court heard evidence from an independent clinical expert, Professor Wade, a neuro-rehabilitation consultant. He informed the court that GU was almost certainly completely unaware of himself and his environment and had been for seven years. GU was being treated at a recognised centre of excellence and had received first class physical care. There were no reversible causes of his lack of consciousness. None of those who saw him regularly as part of their work on the ward had ever noticed any interaction or any response to suggest awareness. GU had been thoroughly tested using standardised tools such as the “WHIM” (Wessex Head Injury Matrix) and the “CRS-R” (the Coma Recovery Scale – Revised). His life expectancy now might be another 10 years, but there would be no change in his condition.

We then heard from GU’s brother and his son (both of whom also had the opportunity to ask questions of Professor Wade). Between them, these two men conjured up a vivid picture of GU as a talented airline pilot, gregarious and sociable, and someone who had had “a great appetite for life”. Both men were clear in court that, given everything they knew about him, they did not believe GU would want to live in his current state. This view was also supported by written statements from other family members and friends.

The point of divergence between the patient’s brother and son concerned the appropriateness of clinically-assisted nutrition and hydration. The brother stated that he (and the rest of GU’s family and friends) were clear that it was wrong to continue with this. The son, by contrast, said that it would be wrong to stop it. His father had expected, he said, to “go with a bang” at 36,000 feet while flying a plane – a fate almost the polar opposite, as the judge observed, to his current situation. If there was the option of a fatal injection the son said he would be prepared to give it to his dad himself, but he could not contemplate having any part “in taking away my Dad’s God-given right to food and water”. He is not alone in this: interviews with families of PDoC patients show that many feel the same way.

Mr Justice Hayden’s skill in hearing these sorts of cases was amply illustrated in the way he handled this situation. He kept the focus on the patient while also showing a great deal of care to the family members present. He said to the son: “I entirely understand and respect both the views you express and the clarity and sincerity with which they are articulated”. When the son declared that it is “my duty to look after my dad”, the judge said it was his responsibility as a judge to think about what GU wanted for himself “not what his son would want to do for him”. He was also careful to ensure that the son, as litigant in person and as the individual now isolated within the family as a whole, was able to express his point of view in detail and have it fully considered in court.

Discussion of the morality of discontinuing CANH occupied a large part of the hearing. The son’s arguments were given extensive attention. This included discussion about any potential for pain (and the palliative care measures put in place to try to avoid any such possibility) and how long it might take for a person to die following withdrawal of a feeding tube. Broader ethical considerations were also addressed, including engaging with the son’s experiences of working in Africa (where he’d seen how a child might walk for miles to find water) and reflections on his appeal to the Universal Declaration of Human Rights (enshrining a person’s right to access adequate food).

The judge probed the independent expert to ensure that he addressed the son’s concerns about clinical issues, such as the potential for pain and the likely length of the dying process (estimated to be somewhere between one to three weeks), but acknowledged that the more fundamental concerns were intractable. He commented that the son’s written testimony submitted to the court presented a “brutally intellectually honest opinion”, put forward with “uncompromising integrity”, “legitimately philosophically and morally argued”, presented through a “stark and intelligent articulated perspective”.

Mr Justice Hayden offered to visit GU himself first thing the following morning and to reconvene the court after that. The hearing restarted at noon the next day and, before revealing his decision, the judge took great care to describe his visit to GU to the family – painting a vivid picture of the patient being well cared for by “heroic” and devoted nurses, in a room with a view over a rose garden (“in full and resplendent bloom”). Only then did he deliver his judgment with his conclusion that it was not in GU’s best interests to continue with CANH.

Having heard both the clinical evidence and evidence about the type of man GU had been, Mr Justice Hayden concluded that the current course of treatment was “protracting his death not prolonging his life”. He added:

“None of the options available are attractive. He can stay as a husk of the man he once was for a decade (not an attractive way to die). The only other option is what his son would characterise as ‘starvation’ – but its benefit is that it can be palliatively protected and even if it is 21 days, it is not a decade”

In the oral judgment he said:

“What we are truly contemplating is not the prolongation of his life but how he should be permitted to conclude his life at the end of his days. It’s not a ‘right to die’. It is a facet of how he should live at the end, and for how long”

He stated that CANH should be discontinued as soon as possible, and he hoped the rift in the family would heal and that they could remember GU as he had been before his injury.

Reflections on delays in assessing GU’s best interests about CANH

Throughout the hearing, and in his oral judgment (a written one is not yet available), the behaviour of the hospital treating GU was repeatedly an issue. There were questions about their behaviour that the hospital was not there to answer. Although he wanted to make sure that the hospital would have the opportunity to make representation in the future, and underlined that the Court of Protection was “non-adversarial” , Mr Justice Hayden clearly wanted to make sense of what had gone wrong.

Reviewing the evidence presented in the independent report, and hearing from the family, Mr Justice Hayden considered it “highly likely” that GU had been subject to treatment that was not in his best interests for some time and that “what we are doing now should have been undertaken a long time ago”.

In discussion with the Official Solicitor, the judge explored the possibility that this unjustified treatment may have been going on since at least 2017 or 2018.

The reason for choosing 2017 as a significant marker since when treatment has been unjustified seemed to be because this was when a series of ceilings of treatment were put in place in discussion with family members – but this discussion may have failed to address the question of the feeding tube.

The reason 2018 is significant is because this is when the brother, with the support of the rest of the family, most overtly challenged the hospital’s use of CANH. The year 2018 is also significant because this is when the British Medical Association and Royal College of Physicians produced detailed guidelines on decision-making about “Clinically assisted nutrition and hydration for adults who lack the capacity to consent”. These guidelines include clear advice about annual reviews and the importance of consulting families to unpack what the patient themselves might have wanted.

In was also in 2018 that a landmark decision was handed down by the UK Supreme Court An NHS Trust v Y UKSC 46 (‘Re Y’). The Supreme Court ruled that it is not mandatory to seek judicial approval for decisions to withdraw clinically-assisted nutrition and hydration (CANH) from patients in vegetative or minimally conscious states. Instead, a decision to withdraw can be taken by the responsible clinicians so long as robust procedures are followed in accordance with the national guidance on and there is no disagreement about the patient’s best interests. It also made clear that the courts are still available where the patient’s best interests are in dispute, or where the decision is ‘finely balanced’. A family dispute, such as the one evident in this case, would be one clear reason for going to court if the clinicians responsible were unable to resolve this to make a best interests decisions.

The judge underlined that “It is a principle of medicine never to do harm”. The fact that a family member had moral reservations about withdrawing CANH “does not absolve the hospital from bringing this case quickly. Doctors are not allowed to continue in a way that compromises a person’s dignity.” Mr Justice Hayden also went out of his way to try to be clear about where responsibility lay declaring: “I do not attribute avoidable delay to [eldest son]. His point [concern about CANH-withdrawal] was properly made, nor would it have ever been reasonable to expect him to change his mind.”

It is the responsibility of clinicians to ensure they any treatment they give is in the best interests of their patients. In expressing his displeasure at the fact that the hospital was not a party to the case, the judge noted “the hospital has deliberately avoided the litigation” and stressed that “The hospital can’t be allowed to hide away from responsibility by not confronting decisions that need to be taken and then not joining legal proceedings”. Avoidance of an issue such as whether or not CANH is in a patient’s best interests “can never be reconcilable with medical ethics”. He said of the hospital, which seemed to have continued CANH by default: “To act in a way that has only one outcome is as ethically compromised as taking the wrong decision: perhaps it’s time to confront that.”

At one point during the hearing Mr Justice Hayden commented:

“This is one of the greatest hospitals in the world. If they can’t comply with or choose not to follow the guidelines – if the reality is that they do harm – then we have to find some way of addressing this. What can I do as Vice President of the Court of Protection?’

He concluded however:

“I draw back from making any further comment because I wish to investigate this further. I do not wish my investigation to be conflated with the individual at the centre of the process.”

Here I, too, will draw back from adding any further comment on the delays – partly because it is important to await the outcome of further investigation and partly because, from 2020, I was myself involved in supporting this family in trying to support the best-interests decision-making processes in this case. What I plan to do in a second blog however, is to contextualise the questions Mr Justice Hayden raised about delays by reflecting on my wider experience of being asked to help in such situations, I will illustrate both some of the good and not so good practice that is happening in units across England and Wales and discuss how this has changed (or not) over the last decade, as case law and professional guidance has evolved.

In the meantime, the message from this hearing is clear. Family concerns about the morality of CANH-withdrawal should be taken very seriously indeed. This does not mean that it is necessarily in the best interests of a patient to continue to provide CANH and it certainly does not mean that clinicians can simply ‘avoid’ making a decision or ‘wait’ in the hope of an emerging family consensus.

When considering whether to continue or discontinue a treatment, ‘no decision’ is not an option. All institutions and clinicians working in this area need to be fully familiar with the law and professional guidelines. They need to be sure they are consulting appropriately with the patient’s family and friends and acting in patients’ best interests, taking into account the best available clinical evidence and – crucially – information about the individual’s approach to life, and their values, wishes, feelings and beliefs.

Jenny Kitzinger is Professor of Communications Research at Cardiff School of Journalism, Media and Culture. She also co-directs (with Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre and runs online training for healthcare professionals about law and ethics. She tweets @JennyKitzinger

Hillingdon 10 Years on: Another Deprivation of Liberty

By Mark Neary, 22nd June 2021

Ten years ago this month, on 10^th June 2011, I sat in the Court of Protection as the Honourable Mr Justice Peter Jackson handed down his judgment in the landmark Hillingdon v Neary case.

The Neary in question was my son, Steven, who at the time was 21. He is autistic and has learning disabilities. The meat of Mr Justice Jackson’s ruling was that in keeping Steven away from his home for 359 days in 2010, London Borough of Hillingdon had breached Steven’s rights under Article 5 (right to liberty and security) & Article 8 (respect for private and family life) of the Human Rights Act 1998. He also ruled that the legislation that the Local Authority had used to justify their actions, the Deprivation of Liberty Safeguards in the Mental Capacity Act 2005 had been unlawfully authorised throughout the whole year of Steven’s detention.

Fast forward 10 years and on the day before the 10^th June 2021, I was browsing the Twitter feed of the wonderful Open Justice Court of Protection Project. Most days, they list the cases that are due to be heard in the court the following day. My eyes were immediately drawn to one case, listed for the morning on 10^th June. One of the parties was the London Borough of Hillingdon and one of the main issues being considered was their use of the Deprivation of Liberty Safeguards for a resident in one of their care homes.

I must admit the coincidence of such a similar case, a decade apart, galvanised me and I volunteered to report on the hearing.

Back in 2011, the head of Hillingdon’s social care department stood on the steps of the High Court and told the press that they have learned lessons from the Neary case. This felt like the ideal opportunity to see if they actually had.

The hearing

The hearing was conducted remotely. It was a very different experience, watching the hearing in my shorts, scrunched up on my sofa, to being dressed up to the nines in the splendid gothic courtroom at the Royal Courts of Justice. Nevertheless, I felt welcomed and there were no technical issues whatever throughout the one-hour hearing.

The case was about EW, who has diagnoses of dementia and schizoaffective disorder. Now in her early 80s, EW was born and (in part) raised in Scotland and is now adamant that she wants to return to Scotland for the final years of her life. So, this is a Section 21A application.

Section 21A applications are very common in the Court of Protection and the Open Justice Court of Protection Project has blogged about them before. They are effectively reviews of whether someone is lawfully deprived of their liberty.

Sometimes they result in a person being free to leave and to choose for themselves where to live, as in the case of Mr B who was found to have capacity to make his own decision. Sometimes, even though a person is deemed to lack the mental capacity to make their own decision, the court recognises that they want to live somewhere else and makes this possible (as in the case of Re UR, who was supported to move back home to Poland, where she hadn’t lived for more than 40 years). But these cases take time. All through the hearing, I was dispiritedly aware of an 80-year-old woman’s clock ticking.

This was the second Section 21A application that had come before the court for EW. The first hearing took place in 2019, where the judge had agreed with the Local Authority that it was in the best interests of EW to continue living in her current care home. Since that hearing, EW has continued to voice her objection to being in the care home, recently raising the issue of wanting to live in Scotland.

This was a directions hearing and as such largely devoted to making plans about what was needed for a future hearing at which a decision could be made about whether or a move to Scotland was in EW’s best interests. The Local Authority had already agreed to provide everything counsel for the Official Solicitor (Alex Cisneros) was asking for by way of further evidence before the next hearing. The entire hearing consisted of the judge going through an agreed directions order and the judge correcting typos and suggesting a couple of bits of additional evidence that might help before the next hearing. So, although the issue of a move to Scotland was discussed at some length, much of the hearing consisted of the judge going through a list of directions (for example, arrangements for a round table meeting, plans for evidence from the Official Solicitor, an order for a special visitor report, and the date of the next hearing etc). There were no substantive submissions from either party and there was no dispute about the directions.

Reflections

In my view, Hillingdon was woefully unprepared for some of these discussions in ways that reveal an awful lot about attitudes towards people in state care and the sometimes large chasm between the legal process and people’s ordinary lives.

For example, there was a discussion about whether to appoint an “inquiry agent” to look into whether EW has any relatives or friends presently living in Scotland. One desperately sad fact of the case was that in all the time EW has lived in the care home, she hasn’t received a single visitor. Hillingdon felt that tracing anyone who knew EW would ultimately prove fruitless and were against an inquiry agent being appointed. I suspect that part of this objection was about cost, and Hillingdon felt that an inquiry agent would only duplicate the efforts they’d already undertaken (unsuccessfully) themselves. As with all the directions, there was lengthy discussion about the timescales required to carry this out.

The judge asked for a “pen portrait” of EW. She wanted to get an understanding of EW’s personality – her likes and dislikes, her beliefs, what she does with her time in the care home. The judge reminded the local authority solicitor that this was important so a balance sheet approach could be taken about what aspects of EW’s life could be transferred to Scotland. This pen portrait will be served along with all Hillingdon’s other evidence (including a Care Act assessment, a search for alternative placements in England and consideration of a move to Scotland) in six weeks time.

I think I was muted by the court clerk. I hope I was muted by the court clerk. I wouldn’t have liked my gasp to have been heard as I reacted to the idea that it might actually take as long as six weeks to produce this bit of evidence. Steven’s support workers could knock up a very thorough pen picture of him in 15 minutes. I had the awful feeling that probably nobody has taken the time to find out what EW is really like.

Similarly, and this was a direction from the 2019 hearing, the judge had directed that EW’s room in the care home be personalised. This hadn’t been done. It wasn’t an oversight. It was believed by Hillingdon that personalising her room may cause EW to become agitated. It didn’t sound like the judge bought into this theory and she kept it on the directions list. EW had been clear that Inverness was her favourite place in Scotland. Would it be too time consuming or too upsetting for EW if someone were to print off a photo of an Inverness landmark and purchase a photo frame from Poundland? Small acts of humanity seemed in very short supply.

One of the earlier directions had been carried out. A medication review had been ordered and had already taken place. The outcome was that EW’s medication has been changed and that her “behaviour has improved.” When pushed on what that means, the court were told that EW’s delusions happen less frequently. I’m fascinated by the framing of this. Is a delusion a behaviour? There were moments when she believed that her parents were still alive and that she would see them again in Scotland. I’ll address the mental capacity issue shortly, but there was a sense that this occasional thought of EW’s might come back to bite her.

EW’s wish to end her days in Inverness may not weigh heavily in the best interests decision that will need to be made if the court decides that she lacks capacity to make her own decision about where to live. I worry that the groundwork for that is already being prepared. There was a weariness whenever Scotland was mentioned.

At best, her desired move may be put down as an unwise, sentimental wish; at worst, an example of her delusions. I started to recall that wonderful 1980s film, The Chain. In the final section of the movie, a wealthy, retired judge (aptly) played by Leo McKern learned he was terminally ill and decided to sell his Mayfair home and return to the street he had been brought up in at Hackney. It didn’t end well. Observers may have seen it as an unwise move. But nobody was assessing Mr McKern’s capacity, so he could follow his plan and deal with the consequences of that. So what if EW’s last wish is sentimental? So what, if it turns out that she is no happier in Scotland than she is in Hillingdon? I’ve written many times before (e.g. here) about how mental capacity assessments are weighted heavily against those being assessed. The whole process becomes a head exercise. The person has to demonstrate their reasoning powers; that they can weigh up pros and cons. Even if they can do those things, they then have to have the verbal ability to convey their thinking process to a sceptical outsider. For people like EW, decisions driven by the heart or their gut aren’t permissible.

I may have missed it, but by the end of the hearing, I don’t think a date had been set for the final hearing. The deadlines that Hillingdon requested for each of the directions I’ve listed above added up to a few months. I sat on my sofa after the hearing ended, for over an hour, lost in a kaleidoscope of thoughts. People: real human beings, people in the middle or at the end of their lives. Processes: long, legal processes alongside local authorities who have long-since lost the oft-quoted mantra from Mr Justice Munby that the State is the servant and not the master (para. 52, A Local Authority v A and another [2010] EWHC 978).

I don’t know whether EW will ever get her return to Scotland. I doubt it. The odds couldn’t be more stacked against her, despite the humanity of the judge.

I hope, at least, she lives long enough to see a resolution to this inhumane circus – and maybe even gets to see Inverness again.

Mark Neary is a counsellor, writer, campaigner and trainer. He’s the father of Steven Neary, a young man with autism and severe learning disabilities, who was at the heart of a landmark Court of Protection case (Hillingdon v Neary). He blogs here and is the author of Get Steven Home (here). He tweets @MarkNeary18

Editorial Note: NEWS FLASH: We’ve just heard that the next hearing (which won’t be the final hearing at which a decision about a move to Scotland is made, but a case management hearing) is scheduled for 2pm on 2nd September 2021 before DJ Ellington, as a remote hearing, with a time estimate of 2 hours.

Illustration by Northlimitation, Public domain, via Wikimedia

An urgent court-authorised Caesarean: Seeing behind a published judgment

By Rebecca Brione, 21st June 2021

Editorial Note: This judgment has now been published: University Hospitals Dorset NHS Foundation Trust & Anor v Miss K [2021] EWCOP 40.

I am a bioethicist and reproductive justice researcher. I am also currently the Research and Partnerships Officer at the charity Birthrights, which works to protect human rights in childbirth. I have been following maternity cases in the Court of Protection in both capacities for some years, but I had never previously observed a hearing.

I particularly wanted to observe a hearing concerning decision-making about childbirth because I have significant concerns about how decisions have been made about obstetric intervention in previous cases – in particular the tendency to conflate maternal and foetal interests, the sense that women’s voices are often lacking, not properly heard, or dismissed, and assumptions about what ‘safety’ in birth means.

My interest in Court of Protection decisions on childbirth was first spiked by the media storm around the Re AA case in 2012, in which the Court authorised a Caesarean on a 39-week pregnant Italian woman, originally in the UK for a work-related visit but subsequently detained under the Mental Health Act 1983 after she stopped taking medication and become unwell. The Court found a Caesarean to be in her best interests, apparently due to the risk of uterine rupture. Her voice was completely absent from the proceedings, and her baby subsequently (and separately) removed into child protection. Inaccurate (and in some cases hyperbolic) media commentary led to the judgment in the case being published in 2013. In fact, the imperative to publish in this case forms part of the push for transparency in the Courts that made it possible for me to observe now.

In the intervening years, there have been a significant number of obstetric intervention cases, including a recent case I blogged about in which the Court authorised planned transfer to hospital for an agoraphobic woman who wanted a home birth. I had been unable to observe that case as remote attendance was not permitted, so my blog – like the others in the series – is based on the published judgment. Whilst these are invaluable resources, I am always aware that they paint only a part of the picture, and that as a reader you don’t always feel confident that you can really understand what went on behind the scenes: how the case came to Court in the first place, what support the person at the centre of the case had received and experienced, and what happened during the hearing.

I was therefore really keen to observe a case for myself. When Celia messaged me at about 2.30pm on Thursday 10^th June 2021 asking if I was free “now” to observe a hearing, however, I have to confess my first thought was of being utterly unprepared. I wasn’t ready, I had other commitments, I was nervous. Thankfully pragmatism quickly took over – I found a shirt to go over my running clothes and emailed requesting the link, which was promptly sent. I logged on to observe. I am so glad that I did. It will not be the last time!

In this blog I will share some of my reflections on the process as well as on the case. I have to be clear that I did not observe the whole hearing and I missed some parts at the start, and another part after an adjournment, that would have been really helpful for me to hear. I must say, though, that being able to observe remotely made the whole experience so much more accessible than it would have been. I could access the hearing immediately, I could and did nip out to collect a child mid-way through. I would not have been able to observe this case had it required in-person attendance.

The hearing

The hearing (COP 13766836) was about whether or not it was in the best interests of a pregnant woman (Miss K) in her late 30s with a diagnosis of schizophrenia to undergo a planned Caesarean section. It was a complex and challenging situation.

At the point at which I joined the hearing (about 3.00pm), the Court was hearing evidence from the treating consultant psychiatrist, Dr B, who had been overseeing Miss K’s care for the previous fortnight or so. The judge was Mrs Justice Lieven and the two barristers in Court were Emma Sutton (for the Trust) and Katie Gollop QC representing Miss K (via the Official Solicitor).

Miss K had discontinued medication when she realised she was pregnant and was now “acutely distressed and unwell”.

Dr B described Miss K’s behaviour as variable but as having recently deteriorated, and she was at times being restrained, sedated and isolated in the Psychiatric Intensive Care Unit (PICU) where she was detained under s. 2 of the Mental Health Act 1983. Dr B said this was an unusual case: “I do locked wards: only the most seriously ill patients come to me and we hardly ever have pregnant ladies on our unit”. Miss K was refusing oral medication and being given intramuscular injections.

Dr B said that Miss K had been “compliant” with antenatal services and had recently gone “willingly” for an ultrasound. He said the difference in engagement was difficult to explain, although he did comment that obstetric care helped assuage some of her “paranoid delusions about the foetus”.

He was asked about waiting for labour to commence naturally:

“If we wait for spontaneous delivery we’d need to wait another few weeks and the patient is not easy to manage. We have to go lightly with doses of anti-psychotic because of the pregnancy. There are risks associated with physical restraint. We don’t have adequate access to monitor the baby…. It’s difficult to listen to the foetal heartbeat because we don’t want to put our heads too close to her tummy, because we might get thumped – it’s as simple as that”

He also noted that the psychiatric and obstetric units are about two miles apart, meaning that transport and staffing to support (or manage?) Miss K played into the decision.

Care Plan

After hearing this evidence, the Court turned to look – with the witness – explicitly at the care plan. I did not have a copy of this, but was significantly aided in my understanding by the thoughtful questioning from both Counsel for the OS (Katie Gollop QC) and the Judge who asked lots of questions herself and seemed very focussed on keeping Miss K at the centre of case.

In particular they raised concerns about the plan for her psychiatric care and support post-Caesarean (if ordered). A meeting on 20^th May 2021 had led to a plan for the baby to be removed at birth by the Police using their powers of protection pending the Local Authority applying for an emergency protection order. Miss K was not told of that plan until two days before this hearing.

The Judge asked: “At some point she’s been told they are removing the baby. Has she experienced that as distressing?”. “Yes”, said Dr B, “I think she has”.

Little thought seemed to have been given to Miss K’s care needs on coming round from a general anaesthetic to find her – much wanted – baby to have been removed. The care plan seemed to assume that she would be relatively sedated for a lengthy period as a result of the general anaesthetic; something the Judge questioned (“not speaking from personal experience”) as being ‘not normally the case’ for a Caesarean, “where the dose is often quite a light dose and wears off quickly”.

In this context the care plan post-birth was described as a “recipe for severe problems”.

“You’ve potentially got a very, very distressed patient here. She comes round from a major operation with no baby. She’s highly distressed, and she in the obstetric unit not the psychiatric unit. I’ve seen videos of physical restraint. It’s not a pretty sight however well trained you are. The care plan has about a page and a half about physical restraint at this point – physical restraint on a woman who only hours before has had a caesarean. The plan needs to say more about the alternatives to restraint after the birth”

The care plan also needed to say “more about before the birth” added Emma Sutton. “Yes”, said the Judge, “let’s call a spade a spade. She’s being forced into an ambulance to have a Caesarean to have her baby removed.”

The care plan seemed to be focussed much more on the use physical restraint than supporting Miss K with her distress in the immediate term and after discharge – and whilst this was disturbing to hear, I was also really heartened by the way the Judge and Katie Gollop QC for the Official Solicitor kept returning to this point. They raised what seemed to me to be highly practical concerns about ensuring safe wound care as well as asking questions about why there wasn’t more consideration of use of family support or medication, given the “page and a half” in the care plan on physical restraint. Whilst the Judge said that she knew that “none of the medication is going to resolve the fundamentals of the situation”, it was important to recognise that Miss K was already showing extreme distress and would be “highly distressed” to emerge from a major operation without her baby. She said outright that “I don’t feel that the discharge planning and care planning is sufficiently detailed to give me comfort”.

Miss K’s wishes

Nobody suggested that Miss K had capacity to make her own decisions about the birth. The judge said there was “very clear evidence” that she could not process information given to her or weigh it up to come to a decision. In accordance with the Mental Capacity Act 2005, therefore the hearing was focussed on making a decision in her best interests, giving weight to her own wishes.

Discerning Miss K’s wishes and feelings turned out to be impossible. This was not for lack of trying in the short time available. The Official Solicitor had sent an agent to the hospital to try to speak to Miss K during the hearing, but she declined to speak to him. Counsel for the OS (Katie Gollop QC) reported back: “She won’t answer questions or engage with him. She was earlier preoccupied with wanting to make a phone call to her father. I think this conversation isn’t going to happen”.

The Court heard from the treating obstetrician, Dr A, that Miss K had said she wanted a Caesarean – and indeed the obstetrician thought she had taken capacitous informed consent for a Caesarean earlier in the week. However, it emerged that the obstetrician either did not know, or did not recall that the baby was to be removed after the birth and had therefore not factored this into her discussions at all:

At this point it became apparent that someone else was in the room with the obstetrician who was giving evidence and he began speaking to her. The Judge immediately intervened asking who he was. He turned out to be from the Hospital’s Litigation and Claims Department. “I can hardly emphasise too strongly,” said the Judge sternly, “how inappropriate it is to speak to a witness who is giving evidence in court”.

The published judgment records the Court’s reaction to Dr A’s evidence:

“… the Official Solicitor was “appalled” at parts of Dr A’s evidence. In particular, the Official Solicitor’s concern, which I share, is that Dr A gave evidence that her view was that Miss K had given capacitous informed consent on Monday to a planned caesarean section, but did so stating that she wanted to hold her baby and keep the baby safe and that she was delighted to give birth sooner rather than later (by having a caesarean section) so that she could hold her baby earlier. This evidence was deeply moving because it had already been decided on 20 May 2021 that the Local Authority would take the baby away at birth. So the true position is that when Miss K comes round from the general anaesthetic, there will be no baby. However, Dr A appears not to have understood this or known it. The Official Solicitor, as I am, is staggered by this as Dr A did not seem to have any understanding of what would happen to the baby following the caesarean section taking place”. (para. 17, University Hospitals Dorset NHS Foundation Trust & Anor v Miss K [2021] EWCOP 40)

Unfortunately, I had to leave before the end of Dr A’s evidence, but what I heard really worried me on many levels. It seemed to reflect a complete failure in multidisciplinary care and planning and also left me uneasy about how the Trusts had approached the need to go to Court for an order.

I gather that, shortly after I left, the Court adjourned for amendments to be made to the care plan. These were discussed before I was able to return – I understand they concerned the use of medication around the period of birth and postnatally. When I re-joined, closing statements were underway.

Closing statements and judgment

At the point at which I re-joined, the Court was reflecting that Miss K had been invited to make a decision about mode of birth on the “wholly false premise” that she would be able to hold her baby – they could not know what she would want had she been informed of the plan at the time she ‘consented’ to a Caesarean. (The Judge did reflect, helpfully for me, that the fact that removal at birth was planned did not mean that Miss K may not be later reunited and able to care for the child.) The Trust had reiterated their position that they wished the court to authorise the Caesarean.

Katie Gollop QC, acting for Miss K via the OS set out what I think is a fairly unusual position of taking no view on what the best interests of Miss K would be. This was because, she said, she had no sense of what Miss K’s wishes and feelings were. The Judge commented that she had looked at the attendance note from the OS’s agent and that there was some evidence that Miss K wanted to protect the baby, and that, therefore presumably wanted the baby birthed safely.

It has to be said that I heard no specific evidence that vaginal birth would not be safe; rather some brief evidence that monitoring labour would be challenging and that waiting for birth would involve further stressful interactions (for staff – whose best interests should not be considered – as well as for Miss K herself). I would have liked to have heard more about the potential to consider whether supporting a vaginal birth may have allowed Miss K more opportunity to be engaged with the “much wanted” pregnancy and baby, and avoid the extreme scenario of being cut open and having her baby removed before she awoke. I would also have liked to have heard evidence from any midwifery support she had received during her maternity care: their experiences of her engagement and interactions over time could play an important part in understanding if and why she was engaging differently with different aspects of her healthcare, and how her views on the pregnancy and wishes about birth had developed over a longer period.

Given the urgency of the case, Mrs Justice Lieven gave an oral ex tempore judgment. The published judgment is now available and closely reflects the oral judgment as I heard it in Court.

She first raised gave concerns about the timing of application – which are worth reading in the judgment if only to sense the extent of the judge’s unhappiness about how this case had come to court. The need for a court hearing in this case could have been foreseen, she said and “it was incumbent upon the Trusts to have made this application significantly earlier”.

“It is wholly unacceptable that NHS Trusts routinely put the Official Solicitor in such a position where she cannot do the job she is instructed to do, and where her role effectively becomes a tick box exercise. This is a waste of resources and wholly unhelpful to P’s best interests.” (para. 4, University Hospitals Dorset NHS Foundation Trust & Anor v Miss K [2021] EWCOP 40)

As an observer, I would have to agree.

The Judge went on to make the observations about Dr A’s evidence earlier in this blog.

In terms of the best interests decision itself, the reasoning was familiar to those of us who follow maternity cases. Mrs Justice Lieven noted that Miss K was “plainly concerned about the safety and best interests of her baby. I have no reason to believe her wishes would be anything other than to have the safest birth possible”. The ruling reflects on the risk of further deterioration in Miss K’s mental health, “continuing with the pregnancy plainly poses some risks to the baby” and that she would be unlikely to cooperate with intrapartum care. “Therefore, allowing her to go through a vaginal birth would be highly risky to her and her baby.” [at para. 19]

Risks could be “minimised” with a Caesarean, and with the care plan now available. “In those circumstances it seems to me to be absolutely clear that a planned caesarean section is a better option”. [at para 22]

Reflections and postscript

Since the hearing, I have thought long and hard about that decision.

I did not envy Mrs Justice Lieven, who herself commented that she did not have the luxury of declining to take a position on best interests. Although I didn’t have the advantage of hearing all the evidence, I am far from convinced that I would have felt better placed to make a best interests decision myself if I had.

I can see why planned care for someone in a highly distressed and deteriorating state is attractive on many fronts. However, like the Court, I really struggle with the sense that there seems to have been no attempt to engage openly and honestly with Miss K, at a time when she may have been better placed to consider her wishes and feelings in an inevitably harrowing situation.

I remain really concerned that it apparently took a Court application to put Miss K’s wellbeing at the centre of the care planning and I wish very much that I had heard what other support – if any – was added to the care plan in the light of the concerns raised. I wondered whether the option of vaginal birth could have been given more consideration in comparison to a surgical birth under general anaesthetic. I worry that the description of a Caesarean as “safest” in the abstract seems to turn on a very narrow – and arguably foetus-focussed view – of what safety means.

We now know from a postscript to the published judgment that Miss K transferred without restraint to the hospital the following day, “met with the clinicians and engaged with them fully and walked into theatre”. When they’re available, the postscripts to such cases often report that the woman in question acquiesced to treatment or complied with clinicians, often contrary to the staff’s prior expectations.

Pre-operative monitoring identified concerns about the foetus at that point, but the baby was born by Caesarean and is now doing well. The postscript does not say how Miss K is doing. I wish I knew.

In the light of this later clinical information – not of course available at the time of the hearing – it seems clearer that Caesarean may have been the better option.

Nonetheless, my disquiet about how Miss K was seen and heard throughout her care remain.

And, as they did last week, my thoughts keep returning to a woman who may have walked into theatre, but who awoke from the operation to find her “much-wanted” baby gone.

Rebecca Brione researches bioethics in relation to pregnancy and birth and tweets @RebeccaBrione. She is also the Research and Partnerships Officer at Birthrights @birthrightsorg. She has written this blog post in a personal capacity.

Photo by Amit Gaur on Unsplash

Chaos in court and incompetent decision-making: Visual monitoring Part 2

By Claire Martin, 17th June 2021

This hearing, on 6^th and 7^th May 2021 before HHJ Howells at Wrexham County and Family Court (COP 13575520 Re: B) was the second hearing I’ve observed concerning “David” – a 39-year-old man with a severe learning disability, poorly controlled epilepsy and congenital cerebral palsy with right-sided hemiplegia.

At the previous hearing, on 11^th February 2021, I’d learnt that David’s care team, concerned about his night-time seizures, had installed a visual monitoring system almost two years before, without holding a best interests meeting about this, and without consulting David’s family. Counsel for David at the last hearing stated that there had been a ‘wholesale failure by either public body [to recognise that] a video monitoring system required a best interests decision’.

Having blogged about this case previously, I was very pleased to be able to attend what was (again) intended to be the final hearing for David, and a judgment on the issues of:

whether a visual monitoring system (VMS) is in David’s best interests, and if so, how this will be deployed and monitored, and
whether the public bodies should be responsible for paying David’s legal costs.

The applicant was David, represented by Emma Sutton and instructed by David’s litigation friend, his Relevant Person’s Representative. The respondents were the local authority (Pembrokeshire County Council, represented by Robert Goodwin), Hywel Dda University Health Board (represented by Anna Tkaczynska) and David’s parent (her choice of descriptor), who was a litigant in person.

When the hearing started, I was asked to confirm to the judge that I had received, read and understood the Transparency Order for the case. I was the only public observer on this occasion and the judge (HHJ Howells) noted that I had previously written a blog about the same case, which I was surprised to hear her comment on to the court!

Delayed Submissions – an ‘unfortunate situation’

The hearing started inauspiciously, with HHJ Howells stating that it looked like there might be a ‘change in position’ from some parties, though noting that the ‘amended bundle … amounting to 435 pages digitally, was only filed yesterday or the day before’. It transpired that the position statement for the Health Board, as well as their updated care plan proposal were only filed on the day of the hearing (due to start at 10.30am). This is despite the fact that – as I noted in my previous blog about this case – “The judge asked for Position Statements forty-eight hours in advance to allow all parties to read and digest the contents.”

Other documents (care home records, MDT meeting minutes, an article from a medical journal, some emails) were said to have been ‘filed very late’ and Emma Sutton (counsel for David) said there was:

“… a plethora of additional information [submitted] an hour before a two day trial. I am making my way through it but there is a significant amount of information. … This is a wholly unacceptable position the Health Board has put people in.^[1]”

It became clear that the Health Board had failed to provide the required updated information or position statement by 4pm on 4^th May, when the hearing was at 10.30am on 6^th May. The judge said that ‘costs will be considered’ and addressed counsel for the Health Board: “Ms Tkaczynska you have a chance to explain”.

In response, and by way of explanation, counsel for the health board ran through a list of documentation, when it was filed, who received what from whom, and there ensued a multi-way conversation between all barristers and the judge about when documents were requested, why they weren’t chased when they were not received and why the Litigation Friend for David (his RPR – Relevant Person’s Representative) had been missed from some communications (it emerged that an incorrect email address for her was used in communications from the Health Board). This was then not rectified, meaning she was not included in a Best Interests meeting. I observed the judge with her head in her hands at one point, looking exasperated.

“One would have thought that if the litigation friend didn’t respond it would have alerted others to the need to chase up, but this doesn’t appear to have happened. …. I have received all these [documents] and I am willing to proceed but it’s not fair on others, especially counsel for [David] and his parent.” (HHJ Howells)

Emma Sutton suggested a half hour break to give people time to read the documentation. The judge thought that ‘optimistic [because] important information needs to be absorbed as well as read’. I was struck, especially, by the judge’s care for David’s parent, who was representing herself, and was abroad, in a different time zone and had not received all of the relevant documentation until the morning of the hearing. The genuine consideration of what this might be like for her was palpable, and it was made clear that she could ask for longer if she needed more time:

HHJ Howells: “This is an unfortunate situation – especially for the litigant in person. [Addressing David’s parent] you have permission to drink caffeine!”

We returned at about 12.20pm. It was still not clear (to anyone) what the Health Board and Local Authority’s positions were – either in relation to David’s care needs, or their proposed options to meet those needs or their proposals to put different options into effect. Emma Sutton noted that this needed further exploration. David’s parent’s view was that the VMS should be removed ‘immediately’.

Evidence from the Expert Witness

The first witness was Dr Dougall McCorry, a Consultant neurologist and epilepsy specialist.

He was a witness for David, the applicant, and so Emma Sutton opened the questioning to elicit the evidence in chief. She took the witness through his expert views on the practice of video-monitoring for epileptic seizures, the types of seizures most associated with SUDEP (Sudden Unexpected Death in Epilepsy), David’s particular risk of SUDEP and Dr McCorry’s view of the best way to mitigate those risks.

Emma Sutton went on to explore movement monitors (e.g. wrist alarms), mattress alarms and anti-suffocation pillows.

Cross-examination followed. Anna Tkaczynska (counsel for the Health Board) asked questions about proposed additional staffing for observation, the likelihood of picking up and attending all seizures and the balance of risk and privacy for David. Dr McCorry was clear that, from a clinician’s perspective ‘the gold standard is observation at all times’. This led to the following exchange:

Counsel for the Health Board then asked Dr McCorry to clarify the view from his supplementary report regarding the reasonableness and efficacy of trialling other monitoring technology. Dr McCorry replied: “In the current care plan – are we adding to his care? Will we detect more seizures with a mattress or movement alarm? If you really want to know what percentage you’re picking up, you must observe as well, to audit.”

This point – about accurate measuring of the percentage of seizures that can be detected by different monitoring practices, was really the nub of the case.

It later became clear that evaluation of the VMS had never been part of the installation plan in terms of whether it increased the number of seizures it accurately picked up. So how could the team know if that level of intrusion might be justified? This seems like a really important point to me – the VMS was simply installed on the advice of the treating clinician without a plan to collect evidence of its safety benefits over time, to weigh against the intrusion into David’s privacy.

By the end of Dr McCorry’s evidence in chief, I thought he was suggesting that the permanent observation of David (including using the VMS) was a certain way of picking up all of his seizures. However, further questioning of Dr McCorry by David’s parent (as well as later evidence from David’s treating medical consultant) suggested otherwise. It became clear that VMS for people with epilepsy (including David’s kind of epilepsy) is quite unusual – his treating clinician later stated ‘5% of people I see’ have a VMS set up. It also wasn’t entirely clear why this had been implemented for David at the time it was. Furthermore, he hadn’t had any of the types of seizures of concern, at night, for over a year (which I think were the original justification for the use of the VMS).

There was a break for lunch and at 2.25pm the hearing resumed with an expectation that David’s treating clinician would be the next witness for the Health Board. Prior to this, however, it was reported that agreement had not been reached between the public bodies for funding of additional care at night for David. This was important because the treating clinician would be questioned on different potential monitoring methods for David, which would necessitate more staff at night (and thus increased funding).

A discussion ensued between Robert Goodwin, counsel for the Local Authority and the judge regarding the LA position on funding of additional care for David. Robert Goodwin reported a misunderstanding between the Health Board and LA regarding the funding ratio as well as how additional care resourcing would be deployed (solely for David or shared). Frustration rippled through the court:

The judge addressed David’s parent: “The Health Board and the Local Authority are at cross-purposes in terms of funding an additional person – whether this is for [David] or to share with others. Are you prepared to continue?“ David’s parent replied ‘Yes’.

My reaction at this point was astonishment at how patient the judge and David’s parent were. The care system appeared in a mighty pickle about all sorts of things, and readiness for the hearing with clear and comprehensive options appraisals, care plan proposals and funding had not, seemingly, been their priority.

The hearing nevertheless continued with evidence from David’s treating clinician.

Evidence from Treating Clinician

David’s treating clinician had known him for 15 years. Counsel for the Trust asked minimal questions of her witness and then counsel for the local authority cross-examined him, focusing on evaluation of the VMS and staffing required for this. David’s treating clinician outlined his view of what would need to happen to reduce the use of the VMS: at least a year with no overnight seizures. He said “In my view [David] needs to be observed at all times – how that’s done is for the care team”. Irrespective of the lack of legal process regarding deprivation of liberty, I found it curious that, how it was subsequently deployed (2:8 staff:resident ratio) meant that the VMS could not facilitate ‘observation at all times’.

Litigant in Person cross-examines David’s Treating Clinician

I found this part of the hearing fascinating. It is important to know that David’s parent is a medical doctor herself and had done a lot of research about the nature of David’s epilepsy, risk of SUDEP and how best to mitigate those risks. She asked about population versus individual risk for David and proffered a view that, for people such as David, the longer they live without ‘succumbing to SUDEP’, the less at risk they are as time goes on. The treating clinician disagreed with this view. His estimate of SUDEP risk for David was 1:300 in any one year.

I have not heard a litigant in person question a witness before. I am not sure how common this is in the Court of Protection. It was a particularly affecting exchange because David’s treating clinician had seemingly had a good relationship with his parent over 15 years, and he clearly cared about David’s welfare. At the same time, it was evident that something had gone very awry with the planning and communication around David’s care.

It was my understanding that the night-time GTCS were the reason for the installation of VMS, so this was a pertinent point raised by David’s parent. They then discussed evidence around SUDEP and comorbidities, papers that the treating clinician cited (but did not provide) in his evidence. The treating clinician said that the ‘SUDEP data doesn’t allow such a fine-tuned analysis’.

David’s parent had asked very probing, evidence-based, questions regarding risk and mitigation of risk, and applied them to David’s recorded seizures. The treating clinician seemed somewhat flummoxed by this and I felt unconvinced that he had properly considered whether the VMS would actually offer the protection to David that he proposed it would. David’s parent was of the view that it did not, and therefore the intrusion into his privacy was not justified.

Counsel for David, Emma Sutton, then picked up this line of questioning and argued that the blanket, night-time VMS – which was meant to offer ‘observation at all times’ to mitigate risk – was not, in reality, viewed at all times.

As counsel for David, Emma Sutton’s questioning was concise, incisive and absolutely to the point. She had clearly extracted the key pieces of information regarding the process of David’s care and was able to lead the court along a path that revealed a clearer view of the issues. Here’s an example:

Following Emma Sutton’s questioning, my sense at this point was essentially this: that the medical consultant involved in David’s care took a cautious and conservative approach, without considering a range of options. Everyone (who was included in the process) deferred to the medical consultant’s view. Apparent blanket observation was decided upon, due to his worries about night-time seizures. How this was then operationalised was not specified and did not, in reality, afford the additional protection he desired. The treating consultant did not have a full grasp of how, and how effective, the monitoring of the seizures was.

Leaving aside the unlawful installation of the VMS, the use of the monitoring device in practice felt very messy without a plan for evaluation of its effectiveness. I was also struck by the treating clinician’s response of ‘expecting’ a Best Interests meeting to be arranged – if he had expected it, and it hadn’t happened, why didn’t he rectify this situation (especially since it is a legal requirement)?

Further questioning from counsel for the Health Board and the judge further displayed the difficulty of establishing a clear picture of how a trial (of any technology) would be put into operation and then evaluated carefully. I came to the view that this was because alternative, less intrusive, means of monitoring David’s seizures had simply not been considered. An earlier question from Emma Sutton (counsel for David) perhaps sheds light on why this might be:

I would have thought that’s exactly what did need to happen, under the MCA 2005.

The fact that David’s RPR was not part of some meetings, the fact that a BI meeting was not arranged prior to the VMS being installed, and the fact that his parent was left unaware of the presence of the VMS for a year after it was installed, would suggest that privacy hadn’t been on anyone’s radar for David.

That was the end of Day 1. My takeaways were that:

David’s treating clinician was, understandably, worried about his night-time seizures and recommended a VMS to be installed. This recommendation was actioned by the care system without following the Best Interests process required by the Mental Capacity Act 2005.
The treating clinician was oblivious to the evidenced fact that he did not know how the VMS was actually used in practice, and to whether and how evidence was gathered to enable evaluation of its effectiveness, so it was not possible to know if it had, actually, improved monitoring of David’s seizures. The situation reminded me of this quote from Noam Chomsky: “Science is a bit like the joke about the drunk who is looking under a lamppost for a key that he has lost on the other side of the street, because that’s where the light is. It has no other choice.”
The Health Board and Local Authority had not reached an agreement for additional night-time funding, or a plan for different monitoring options.

Day 2: 7^th May 2021, 9.30am.

The Lead Professional Learning Disabilities Nurse from the Health Board was questioned. as a witness for the Health Board. (I’ve referred to her as Lead Nurse below.)

Before her testimony could be considered, DJ Howells discussed the unresolved issue of funding between the Local Authority and the Health Board. Robert Goodwin for the Local Authority offered an apology for the ‘confusion’ about funding. He said, “We have had limited evidence from the Health Board and did not understand what they proposed regarding extra night staff.’ The Local Authority was willing to fund 40% of this additional staffing. This was agreed with the Health Board and the hearing was able to continue.

Counsel for the health board asked the witness to describe her role. The Lead Nurse explained that she oversees the nurses from the Health Board who look after David’s care. Her role in the CoP hearing was to bring together a full options appraisal (for the monitoring of David’s epilepsy) for the court to consider. A curious exchange occurred at the start:

I was very surprised to hear the lead nurse’s reason for not ensuring that David’s RPR was part of the options appraisal for his care. What she would have needed to support that reasoning was an email back from the RPR stating that she was not allowed to respond to an options appraisal. This was not what happened.

Robert Goodwin for the Local Authority then cross-examined the Lead Nurse:

She then referred to minutes from a Best Interests meeting of 9 July 2020, chaired by a Mental Capacity Act practitioner from the Health Board. The judge asked if the minutes were in the bundle – they weren’t. Counsel for the Health Board stated that she did not know why they weren’t shared; they were an 8-page document. It was agreed that the court needed a twenty-minute break to read this document and the judge (addressing David’s parent) said: “Please say if you need more time to read these. Someone acting for themselves should have plenty of time. My tone says what I think about this.”

And addressing counsel for the Health Board, the judge said: “This is not the way it should be done – piecemeal disclosure. It is not fair for [David’s parent] to not have all the information which is under consideration. I suggest everyone goes for a cup of tea. I’m leaving this hearing yet again.” (Judge)

When we returned the judge addressed David’s mother once again:

All agreed to continue. I felt angry on David’s parent’s behalf at this point. She had not been informed about a video-monitoring system for him, had not been included in a subsequent Best Interests meeting when it did, eventually, take place, and her right to have a voice in these processes had been entirely over-ridden. It felt as if, because the care team knew she might hold a different view to theirs, they simply wrote her out of the story.

Counsel for the Local Authority, Robert Goodwin, continued his cross-questioning and asked the lead nurse about assistive technology being considered at the Best Interests meeting on 9 July. She said she had not been in that meeting and couldn’t comment on ‘how the discussions went’.

It was beginning to look as though no one whose responsibility it was to oversee David’s care (his treating clinician and the lead nurse who was tasked with drawing up an options appraisal) had entered into a deliberative process about methods to care for David, balanced with his human rights. I kept wondering: ‘what if a video-monitoring system IS, in the end, in David’s best interests and they just hadn’t done the working out’.

It reminded me of another case I observed, and contributed to a blog about, called ‘When Expert Evidence Fails’. In that case, the expert witness expressed a clear view about P’s capacity to consent to sexual relations, but had not followed a clear, deliberative process to reach his decision. This seems to me so important in our work with vulnerable people who might lack capacity for certain decisions. Without this demonstrable process, it can look like, and I would suggest often is, our own view of what is best for P, rather than a holistic, person-centred consideration.

Further, when one professional’s view dictates the outcome, this seems even more likely to be the case – privileging only what we consider to be in the best interests of the person, based on our expertise in that one very specific aspect of that person’s care. As Dougall McCorry said earlier: “I’m not the bigger picture about his whole life – I’m looking at his clinical picture”David’s parent then cross-questioned the witness. She picked up Robert Goodwin’s questioning of the lack of consideration of all options for monitoring David’s epilepsy, noting especially that there had been a Best Interests meeting on 9^th July 2020 and the options appraisal had not been available until 7^th April 2021, nine months later. Her questioning illuminates potential issues with a best interests process sitting with one ‘dominant voice’:

Further questioning from Emma Sutton showed that the balance of safety and privacy for David really had not been considered. There were several quite terse and revealing exchanges:

There was then discussion again between Emma Sutton, the lead nurse and the judge about the fact that the Health Board’s recommendations were based on increased funding, yet, at the start of the hearing, funding for those recommendations had not been secured with the Local Authority:

And later in relation to the RPR asking for ‘less restrictive options’ to be considered:

I wondered whether the lead nurse had been placed by the Health Board in an invidious position. She did not seem to feel confident in guiding all the people involved in David’s care and welfare through a thinking, questioning and balancing process to compile a balanced options appraisal – something for which you do not need medical expertise.

Counsel for the Health Board intimated that there would be no point adjourning) since “What else needs to come to the table? Would anything else trump [treating clinician’s] view?” Although the Lead Nurse thought nothing would, the judge pointed out:

But [treating clinician] is not the decision maker in the Court of Protection. He might be in the Health Board, but not here. It might not change the Health Board’s decision but it might provide more information to the court, so we can weigh in the balance for [David]. At the moment [lead nurse] evidence is that she accepts that these should be looked into. (Judge)

With that, it was agreed to break for a joint parties’ meeting to confer about ways forward. This was 12.19pm.

My thoughts at this point were, first, this seems like an almighty mess! Two days of court time (plus previous hearings over the past year) and there was still no comprehensive options appraisal, care plan proposals for different options that were proposed or funding agreed. I might be being unfair – we have been living through a pandemic during this time – however, the VMS was installed prior to the pandemic and I couldn’t help thinking that, had due process been followed then, the case might not have needed to come to court.

Second, I thought that there was a lot of buck passing: submissions for the court and bundle documents were not ready for the hearing, varying reasons for which were proffered; the Local Authority implied the Health Board had not apprised them of their proposals to enable the LA to form a view of their position on funding; the lead nurse appeared to blame the care home (which, at other times in the hearing, was described as ‘exemplary’ in their care practice) for not providing timely information to inform the options appraisal; the treating clinician seemed to ‘expect a best interests meeting to be arranged’ but took no responsibility for this himself, despite being designated the decision maker by his employing organisation. All in all not very edifying.

At 12.47 the judge returned to the hearing (I had stayed logged in throughout, as I was never sure when breaks were going to end and parties return to court). At this point it was just me, the judge and her clerk in the courtroom. DJ Howells said ‘I hope Dr Martin is enjoying observing all of this’, which made me laugh (though I had my microphone off of course). It was certainly a spectacle – and the fact that David himself was not in any distress helped me, at least, to feel more astonished than angry at the situation.

Parties returned to the courtroom and it was agreed that there would be a round table meeting over lunch, including all lawyers, to consider all options.

At 2pm we resumed. My notes read: “Robert Goodwin looks thoroughly fed up. Judge asks Emma Sutton ‘where are we?’”

Emma Sutton, as counsel for David, said:

We have agreed a way forward. There is a gap that needs to be filled. There will be a meeting including [treating clinician] and Local Authority and it’s agreed that an occupational therapist needs to be involved for an assistive technology assessment. We’ll consult Epilepsy Excellence Centres regarding alternatives for care. A possible expert witness – it depends. Then the procurement team needs to be involved regarding devices to see what they can provide. The Lead Nurse is then to provide a pros and cons document including safety, accuracy etc. Then a round table meeting and further court hearing to be built around that. There is a pot of money for additional care now in place [the 60:40 Health:LA agreement from earlier]. Timescales have not yet been decided.

The judge responded (very charitably I thought!) by thanking everyone for “the collaborative approach to proceedings.” She said: :”It seems to me there is a measure of agreement that this should have been done, but there are pressures on people’s time, it’s not deliberate and people ran out of time.”

A further break between 2.15 and 3.15pm allowed the drawing up of the terms of the order from this hearing, including extending the standard authorisation for the VMS, and dates for different people for various tasks to be completed. A round table meeting is planned.

Of particular importance, I thought, was the agreement for the lead nurse to provide, as part of the Health Board’s proposal, details for how the VMS would be used, were it to remain in place. It was evident from this two-day hearing that this had never been planned – it was not specified exactly when to use it (though the lead nurse clarified ‘when asleep’ there was confusion whether it was used ‘at night’ and when David was ‘in his room’ even during the day if asleep); or how to record when a seizure was detected by the VMS as opposed to other means, such as staff being in the room with him (though some records did state ‘observed on video’ it wasn’t known whether this was consistently, and therefore reliably, recorded). The lead nurse had earlier confirmed her view that she would be ‘mortified’ herself, if she was being ‘watched all the time’. She clearly empathised with the intrusiveness of being watched on video in your bedroom. Even more important then, to ensure that any future, court-authorised observation is proportionate and deployed in a carefully monitored and reviewed manner.

Final Thoughts

I have observed around 15 remote hearings now across the pandemic period. None has been as chaotic as this – with respondents not being organised in their communications with each other in preparation for court and court orders simply not being followed. A crib sheet of preparation tips for Trust employees appearing at the Court of Protection would be a good idea! Certainly, for this hearing the following would have been helpful:

Ensuring that – and being able to demonstrate – that you have meticulously endeavoured to include all relevant people in Best Interests meetings and decisions for P, checking the MCA 2005 for guidance if you are unsure about who this should be (e.g. s4(7) Best Interests decisions and who should be included). In this case David’s family and his RPR were not consulted at appropriate times throughout.
The person making the subsequent Best Interests determination (in this case we were told that David’s treating clinician was the ‘decision maker’ and the Lead Nurse was producing the options appraisal) should have considered all relevant people’s voices to produce an options appraisal document in readiness for the court hearing – and be able to demonstrate that this consultation process had been followed.
Referring back to any previous judicial orders in earlier hearings – well before time – and ensuring they are adhered to. This could be facilitated by liaison between parties to chase up required information for documents and to establish agreement or highlighting of areas of ongoing disagreement in readiness for the court hearing. I wonder whether, sometimes, a reminder phone call would be better than an email!
Circulate all documents to be included in the court bundle by deadlines ordered to enable all parties to ‘read and digest’ (as noted by DJ Howells) prior to the court hearing.
A willingness to see the ‘wider-picture’ (or ‘holistic’ picture as David’s parent put it) about a person’s needs and care: that our lives are a balance of risks, including for people who do not retain capacity for certain decisions in their lives.

For David, it felt as if an appearance of belt and braces was wanted in his care (i.e. being watched at all time), without the evidence to demonstrate that this reduced risk of harm. So, we could be looking at an invasion of David’s privacy without the added safety that was it was designed to guarantee: an absence of due process and an outcome that did not do what it said on the tin.

I hope to be able to attend the – hopefully – final hearing which is planned for the 15^th or 16^th July 2021.

Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is part of the core group of the Open Justice Court of Protection Project and has published many blog posts about hearings she’s observed (e.g. here and here). She tweets @DocCMartin

^[1] As usual, I have attempted to render what people said as accurately as possible, but it’s unlikely to be entirely verbatim since I have to rely on my note-taking skills during the hearing, being forbidden to audio-record.

Photo by Steve Johnson on Unsplash

Happy First Birthday to the Open Justice Court of Protection Project

Celia Kitzinger and Gill Loomes-Quinn, 15th June 2021

One year ago today, on 15^th June 2020, we launched the Open Justice Court of Protection Project, a child of the pandemic.

It was born of our passionate belief that “publicity is the very soul of justice” at a time when it seemed that the public health emergency was closing down the opportunity for people to observe the court in action.

Before the pandemic

We’d both had the experience of walking into courtrooms to observe hearings as members of the public. Serious medical treatment cases have always been held in public. As part of her work with the Coma and Disorders of Consciousness Research Centre, Celia had previously attended around 20 hearings in which judges made decisions about whether or not to continue life-sustaining treatment for people in vegetative or minimally conscious states. Gill had spent a month of 2017 in London observing hearings in First Avenue House as part of her PhD research – many (like the one she blogged about here) concerning Deprivation of Liberty.

These hearings concern fundamental human rights issues: the right to life, the right to family and private life, the right not to be arbitrarily deprived of liberty. Gill wrote:

“For disability rights activists, the transparency agenda affords us new opportunities to strengthen and inform our activism. So much of our experience of oppression – of discrimination, and of bureaucratic intransigence – happens behind the closed doors of doctors’ consulting rooms, or of local government offices. But here, in the Court of Protection, it is played out before the authority of the court, and now, before us – the public. Shining a light on collective injustice might be the first stage to challenging and changing it – if we can seize the opportunity.”

Before the pandemic we had found the doors of the Court of Protection wide open, and now it seemed they would be closing again.

Closing the courtroom doors

On 23^rd March 2020, after the Prime Minister’s address to the nation, the Lord Chief Justice announced that (with urgent exceptions) “no hearings that require people to attend are to take place in any County or Family Court until further notice”.

On 31^st March 2020, Mr Justice Hayden reiterated that guidance for the Court of Protection and published a protocol for remote hearings (via phone or video-link). The template order states they “shall take place in private” and any previous transparency order (permitting public access) “shall be disapplied”.

For remote hearings, Mr Justice Hayden considered the court rule making hearings public by default (Practice Direction 4C) to be “unworkable”. He considered that the right to freedom of information could lawfully be restricted in this way since it was necessary for the protection of public health (Article 10(2)).

But as Vice President of the Court of Protection, Mr Justice Hayden is deeply committed to transparency, and even as he (in effect) closed down public access to the courts, he included a section in the Guidance reaffirming the importance of transparency, with the opening sentence: “The culture of the COP is one of transparency, and I am determined to maintain this insofar as possible” (paras. 54-64).

He left open the possibility of public access, despite the new default “private” nature of all hearings:

“In each case active consideration must be given as to whether any part of any remote hearing can facilitate the attendance of the public, if so Practice Direction 4C may be applied and the transparency order reissued.” (para. 59, Guidance 31 March 2020)

It was that ‘loophole’ (that’s how it felt) that we exploited in setting up the Open Justice Court of Protection Project.

Launching the Project

On 17^th March 2020, Celia attended the first ever remote hearing in the Court of Protection, held over Skype for Business. She did so not as an “observer”, but in a voluntary capacity to support “Sarah”, whose father was at the centre of a serious medical treatment case. It was a brutal experience in which an already deeply-distressing situation for Sarah was made much worse by use of remote technology.

Horrified by the idea that future hearings would be equally alienating and distressing for family members, Celia decided to try to observe other remote hearings – and succeeded, against the odds, in mobilising the “Transparency” section of Mr Justice Hayden’s Guidance to gain entry to 19 hearings in May 2021.

This took huge persistence and determination and the willingness to deal calmly with frequent rebuffs. She sent over 100 emails, and had more than 30 phone calls with court staff, to gain access to these 19 hearings. The request to “observe” was often misheard over the telephone: “You want to what? To adjourn?”. Once the request was understood, she was usually simply told that hearings were “private”. There was correspondence from some judges who said the same thing. She was cross-questioned repeatedly about why she wanted to observe and had repeatedly to explain and defend the principle of open justice (to the judiciary!). Celia blogged about the first of these 19 cases (it was before Mr Justice Hayden), and tweeted about others – and we quickly realised that there was a surprising amount of public interest, at least from our own followers on social media.

It also became apparent that remote hearings potentially offer increased access to the court. People don’t have to travel to attend. We can watch hearings across England and Wales from the comfort of our own homes. Far from closing down open justice, the pandemic had opened up a new means of supporting it.

Gill suggested a pandemic project: “Let’s create our own website, blog about some hearings, and encourage a few others to do the same”. We invented some “aims” for the project, created an email account, set up a website, wrote a “welcome” page and pressed the button to launch it. And so the Open Justice Court of Protection Project began.

We said:

A key aim of the project is to raise awareness of the work of the Court, and its social impact. Blog posts covering observations by Public Observers, analyses of published judgments, and other social and legal commentary will be at the heart of how we go about achieving this aim. (Welcome page, 15 June 2021)

We had no funding, and no institutional backing (then or now). We were just two people with experience of the Court of Protection, who cared passionately about open justice in a court which makes draconian decisions in relation to the human rights of some of the most vulnerable people in society. We imagined the Project would be something of a niche interest.

We had some time to create a project like this because many of our usual activities had been cancelled (or “postponed’) due to the pandemic – and at that point it was widely-believed that life was simply ‘on hold’ for a few months and that we would give those talks, attend those conferences, run that training, meet those students in person, after a short delay. We assumed that things would soon go back to ‘normal’, we’d get back to our usual business, and our Project would have been a brief intervention to support transparency at a particularly challenging time.

Two weeks later, we were forced to reassess. We were (as we said) “overwhelmed” by the response, as more than 70 people had contacted us for help with observing hearings. And three family members involved in upcoming Court of Protection hearings had also emailed, asking whether we would observe ‘their’ hearings.

Within the first two weeks of the Project, by the end of June 2020, we’d published seven blogs based on public observations of court hearings: by two future barristers (here and here), a third sector worker, a speech and language therapist, an MCA trainer, a nurse, and a family member of someone with an impairment in the functioning of mind or brain.

On 1^st July 2020 we published the first of our ‘collective’ blog posts. Seven people who had observed the same hearing (seven members of the public observing simultaneously was virtually unheard of back then!) were welcomed by Mrs Justice Lieven who “thanked us for attending … and pointed out that it’s not “open justice” if nobody comes”. We were a varied bunch, including a clinical psychologist, an academic lawyer, and a family member currently involved in an “intimidating” COP hearing of his own. During July 2020, observer-bloggers included a trainee solicitor, a case manager, a social worker, a DOLS Manager, and a trainee IMCA. We were realising the range and scope of interest in observing these hearings. The Project was turning out to be less ‘niche’ than we’d thought.

During this period, we were confronting multiple access problems – including four days during which the email to request access to hearings at First Avenue House had been mistyped on their webpage (so emails were bouncing back) and contact details were missing from the listings for many hearings in regional courts. We had somehow created the impression that we were a big organisation with the resources and connections to solve access problems for members of the public. All we could do was email the courts on their behalf.

We learnt from the blog posts (and informal feedback) that once people overcame the hurdles of access, they were struggling to understand what was happening in court. It became apparent to us how much we already knew about court process and procedures, and that observers without previous experience in court were struggling. The barriers to open justice are not just barriers to access, but extend to legal jargon and obscure court procedures. As speech and language therapist, Olwen Cockell, wrote in one of the earliest blog posts we published: “I could see justice being done. I could hear justice being done. But, hand on heart, I can’t say I fully understood the justice being done.”

So, we enlisted the help of some lawyers and published some ‘explainer’ blogs: A basic guide to the Court of Protection(Alex Ruck Keene); Who’s who in the Court of Protection? (Victoria Butler Cole QC) and what’s in the ‘bundle’ (Kyle Squire). Celia wrote a blog about the reporting restrictions order (here), because several observers simply refused to write blogs, believing they were not allowed to say anything at all about the hearings. We’ve continued to develop these ‘explainer’ blogs, because being in court without understanding what the judge and counsel are talking about can feel a bit like being a child having adults talk ‘over your head’ in sometimes deliberately obfuscatory language, designed to exclude you. We also tried to ‘humanise’ the court, by publishing a more ‘personal’ account from a Court of Protection solicitor about her lived experience and its relation to her professional expertise.

But what most struck us two weeks after pressing the ‘launch’ button, was how positive observers were about the court – most especially in their appreciation of the huge emphasis the Court places on the autonomy of the disabled people at the centre of its work, and of individualised, person-centred decision-making. One observer (who herself advocates for a family member) said of the hearing she witnessed:

“The law enabled a person with a learning disability to access the same rights and healthcare as any other citizen. This gives me a huge sense of relief that my family member will be safe and listened to with these structures in place, and free to live the life he chooses.”

Others made similar points:

“My main focus is that the person remains at the centre of everything. It was so reassuring to see that this also was the primary focus within a formal court hearing for Mr Justice Hayden” (Sara Shorten).

“What I saw happen in this case, was a serious focus on getting things right for the individual person at the heart of it all” (Meriel Scott)

“Mr Justice Williams maintained unwavering focus on what is right for P … I left feeling reassured that person-centred decision-making, an issue I feel strongly about, prevailed.” (Upeka de Silva).

In some ways this was unsurprising: we have both seen good practice in the court. In other ways, it wasn’t necessarily what we were expecting – especially given our own critiques of some of the underlying principles of the Mental Capacity Act 2005 (particularly the concept of ‘best interests’) and our own experience of some very bruising encounters in the Court of Protection. It was also becoming very clear that these blog posts, written by members of the public, presented a version of the Court of Protection that is very different from media representations: they were more personal, more reflective, and more engaged with the challenges of how to do the ‘right thing’ for the person at the centre of the case.

A year of open justice

A year on, we have a much bigger project on our hands than we ever predicted and no indication that we can stop any time soon.

We simply didn’t predict the degree of interest and enthusiasm the project has stimulated, or the extent to which the project has encouraged and supported people from a range of backgrounds (including health and social care professionals, lawyers, and people who are themselves engaged in ongoing proceedings in the Court of Protection) to observe the court in action, and to share their experiences and their reflections via our blog and social media. In the past year we have published 139 blog posts featuring 97 different authors. As it became clear that hundreds – now thousands – of people would be involved in our Project (way beyond our original estimation of maybe a blog every couple of weeks or so), we also had to develop a formal ‘policy’ about what we would and wouldn’t publish (here) and some guidance for bloggers (here).

Recently we’ve also developed tweet threads (collected as pdfs on our web page here) as a method for reporting on some of the hearings we observe. Initially this was simply a means to get something out publicly about a hearing when time-pressures precluded writing a blog – but we realised subsequently that tweet threads are a mode of communication which turns out to be extraordinarily effective in promoting dialogue and discussion with people who’ve not previously engaged with the Project. (Note: the pdfs on our webpage don’t include replies to tweets – to find them, and appreciate the engagement they promote, copy some of the text into the search facility in Twitter, to locate the original tweet thread and responses to it).

The day-to-day work on the Project includes our own observations of the Court of Protection in action, editing and publishing blog posts and tweet threads, maintaining the social media presence of the Project and mentoring would-be observers, who sometimes need considerable support (as described by one contributor who mentored undergraduate students to observe).

Additionally, over the past year we have given 18 talks, seminars, and conference papers. These include: participating in a conversation about remote hearings with COPPA North-West (branch of the Court of Protection Practitioners’ Association); providing continuing professional development training for incoming judges to the Court of Protection via the Judicial College; contributing to the ‘Transparency Review’ being undertaken by the President of the Family Division of the High Court, Sir Andrew McFarlane, and presenting our work to the conferences of the Society of Legal Scholars and the Socio-Legal Studies Association.

In May 2021, we invited Claire Martin and Kirsty Stuart to join the project. Claire is a clinical psychologist based in Gateshead who works with older people; and Kirsty is a solicitor with Irwin Mitchell. Both had become involved with the project via writing for our blog, and subsequently giving talks about their experience as public observers. Both bring a wealth of complementary expertise, experience, and interests to the project.

The virtual ‘home’ of the Open Justice Court of Protection Project is our website. This is where we share details of upcoming hearings in the Court of Protection (‘Featured Hearings’), host supporting information and guidance for observers, including the resources in our Public Observer Wiki and our Hearing Feedback Form, designed to support observers in structuring and making sense of their observations. It’s also where publish our blogs and tweet threads.

The ‘reach’ of the website has surpassed our most optimistic expectations. During this first year of the Project, it’s had over 111,000 views from over 55,000 unique visitors, across more than 100 countries. This has enabled us to put into practice one of the key aims of the Project – that of supporting members of the public not only to gain physical (or virtual) access to the Court of Protection, but also to understand and engage critically with its work as informed ‘citizen journalists’.

We were delighted that in April 2021, the Open Justice Court of Protection Project was awarded the Mobilizing Research into Action prize in the Emerald Real Impact Awards 2020. It was brilliant to see the Project recognised in this way – and a great tribute to the contributions of the thousands of people who have been involved with it since it began: by engaging with the Project via social media; by observing the Court of Protection in action; by writing about their experiences for our blog; by sharing their expertise via our ‘explainer’ blog posts; and by inviting us to contribute to seminars, discussions and other events.

Reflecting back on the last year, there are four achievements we’re particularly proud of:

1. Changing the culture of the court

The Court of Protection now expects and prepares for scrutiny by public observers. This is especially so for Tier 3 judges hearing cases in the Royal Courts of Justice and judges at First Avenue House in London. Outside of London, judicial experience is more patchy (because public access is harder), but it’s many months since a would-be observer has been told that all COP hearings are ‘private’ or cross-questioned about their motives for wanting to observe.

When we started observing we were offered essentially ‘fly on the wall’ status – i.e. the court just went about its business pretending we weren’t there. Now, by contrast, there’s almost always an opening summary (usually from the applicant counsel, sometimes from the judge) about the background to the case and the key issues to be addressed. This is useful not just for us as observers but also for lay participants:

“It’s good practice to have to think ‘how can I summarise this case in 2 minutes’ at the outset. I think it helps to do that in most cases anyway, but a public observer’s presence means we are more likely to have thought about it first. It aids the judge’s understanding and just as importantly the understanding of non-lawyer participants/litigants.” (Barrister)

We’re also now increasingly sent position statements on request: these skeleton arguments which outline the positions of the different parties at the beginning of the hearing are invaluable in supporting our understanding of what is going on. We’re hearing now that, knowing that their position statements may be requested and read by members of the public, some lawyers are trying to write them with more clarity and careful exposition of the law.

One barrister tells us that the presence of observers has meant a more rigorous focus on fundamental legal principles during hearings:

“There has been real enthusiasm for public observers in the Court of Protection. It has been seen as a real opportunity to counter the perception of it as a secret court. As a result, we have been taking the time to expressly set out the first principles and legal principles which should govern everything the Court does. This exercise, which was prompted by a desire to make the proceedings accessible and easier to follow has actually meant that as the principles are pushed to the forefront of everybody’s mind, they are more rigorously and consistently applied.” (Josh Hitchens, barrister)

Another barrister, reflecting on the difference it makes to have observers in court, says:

“It absolutely changes things – practitioners and judges are less sloppy I think, and take the time to properly set out the facts, the law and judgments when they might otherwise refer to things in a more shorthand way. This, I think, is a good thing since it means that anyone participating or watching (often family or even P themselves) can actually follow what is going on far better. It means we are all on ‘best behaviour’ essentially!” (Barrister)

2. Building a role as ‘critical friends’ to the court’s transparency agenda

We take as our starting point that (as Mr Justice Hayden says) “the culture of the COP is one of transparency”– meaning that the principle of transparency is a judicial commitment and aspiration. Putting that principle into practice requires our help – since obviously justice is not open or transparent if we can’t get through the door of the (virtual or physical) courtroom, or don’t understand what’s happening when we do.

Supporting the court in its commitment to the principle of transparency means both celebrating the success of open justice, as in many of the blogs on our website written by people who’ve attended hearings, and – equally – identifying and reporting the problems the court appears to have in implementing this principle.

We know that the court is under-resourced, and working hard (especially during the pandemic) to deliver justice as speedily as it can, against a backdrop of challenges in relation to health and social care. We know that public observers create more work for the court: starting with the processing of emails from observers to court staff, and often culminating in a last-minute flurry of emails between counsel and judge. Lawyers need to be prepared to anonymise documents, prepare an oral summary and a transparency order, inform P and P’s family that observers will be present, sort out the video-platform link, or – with telephone hearings -individually dial us into a conference call (it’s often the judge who does this). And time is taken up in court with additional explanations of legal concepts for the benefit of observers, or by reading out material from documents to which observers do not otherwise have access. There is clearly a cost to implementing the principle of open justice in practice. We do not seek to minimise the fact that transparency is a burden on the court

Since, however, the principle of open justice is – in the first place – a judicial commitment (albeit one we support) and one the courts have historically held to be crucial in a democratic society, we are surely entitled to expect that the courts will do whatever they can to bear that burden graciously. It is the judiciary who have championed the idea that “open justice lets in the light and allows the public to scrutinise the workings of the law, for better or for worse,” as Toulson LJ put it. Or, as Lord Dyson JSC said, “the open justice principle is not a mere procedural rule. It is a fundamental common law principle.” When we ask to observe hearings, we are doing our bit to support and make concrete reality one of the principles the judiciary has advanced as core to its practice.

Balancing our sense of ‘entitlement’ to attend public court hearings with the practical reality that we are frequently excluded from them is at the core of our engagement as ‘critical friends’.

3. Scrutinising expert evidence

Our most frequently read blog post is “When Expert Evidence Fails” (viewed almost 5000 times). In essence, a consultant psychiatrist gave evidence that P, a 68-year-old care-home resident with dementia, lacked capacity to make her own decisions about engaging in sex (and various other decisions). The blog post describes – with examples of dialogue from the court hearing – how his testimony simply collapsed under cross-examination.

When the case returned to court three months later, with a different expert witness, it was deemed that P did in fact have the mental capacity to engage in sexual activity. As we pointed out, the tragedy is that P “who has a degenerative condition – so that time is of the essence for decision-making – has lost a whole year (during pandemic lockdown) of intimacy of any kind with her chosen partner. A year that she can never get back.” The human cost of expert witnesses getting it wrong in the Court of Protection is huge.

We also asked an expert witness to justify and explain the statistics he presented in court concerning the dangers of home birth (he blogged about this here) – since the published judgment quoted him without providing any references to his sources. We sometimes get the impression that the court is overly influenced by the particular individual expert before them, when other experts may have different interpretations of the evidence or draw on different evidence – and there is a problem, too, with using the same experts over and over again.

The most egregious case of expert evidence we have seen in the Court of Protection concerned a neurologist, Dr Pullicino – whose evidence the Court of Appeal said: “lacked every characteristic of credible expert evidence and it is not surprising that the Judge rejected it as effectively worthless”. His key evidence relied on 3 minutes of video recording of P, whose notes he had not examined, on the basis of which he made unsustainable diagnostic claims (as analysed in a blog post here).

After watching the hearing, and doing some background research, Celia wrote a letter of concern to the General Medical Council about Dr Pullicino on the grounds that he caused harm to the patient (and to his family) and damaged public confidence in the medical profession. They are currently investigating this.

So, open justice means exposing not just the lawyers, but also the health and social care professionals who provide evidence to the court (especially those who do so as ‘expert witnesses’) to public scrutiny and to the possible consequences of that.

4. Improving legal literacy and knowledge of the COP

We’ve both learned a lot about the law through watching Court of Protection hearings, and so too have the health and social care professionals, and aspiring lawyers, who have acted as public observers. Observation often has important benefits for continuing professional development:

“I have found the whole observation experience very beneficial. The googling, looking up of legislation, reading up of quoted case law – both during and after the court attendance – has given me a crash course in legislation, that I now realise, I only thought I understood. Listening to a talk about how the Mental Capacity Act is implemented in the courts is one thing – actually observing it as it happens is very different!” (Louise Burrell, social worker)

“I think the most important learning for me from being able to observe this hearing, is the way it has again, allowed me to watch the Mental Capacity Act 2005 ‘in action’ and understand how a senior High Court Judge … works through the process of reaching a best interests decision. I’m also able to take away with me some ideas that I can incorporate into my own practice when completing best interests assessments myself in future.” (Astral Heaven, DOLS Manager)

“For my part, I left [the hearing] with a resolution to examine my own practice, and to consider deeply the motivations for the clinical decision-making forums (e.g. Multidisciplinary Team Meetings) I am part of that do not physically place the person or their family at their centre.” (Caroline Barry, Consultant in Palliative Care)

“For me as a student of health care law, this experience of observing the Court of Protection in action illustrated the reality of applying the ideals of the Mental Capacity Act 2005 to real life. In theory, it’s easy to say that decisions should be made in P’s best interests, but even when – as in this case – everyone agrees what that is, judges have to deal with real-world issues like which rehabilitation unit would be suitable, how to find one with a vacancy in a particular area, how to manage a situation that could change unpredictably before the right rehabilitation unit is available, and how to ensure that the local authority and others responsible for P’s care keep up the momentum in finding the right treatment for her. Understanding the Mental Capacity Act 2005 is not just about analysing black letter law and statutes and discussing it in the abstract. I’ve learnt that the Court of Protection’s role is also about managing the concrete particular details of a particular P in the specific conditions of her life and in the context of over-stretched health and social care services.” (Lucy Williams, aspiring solicitor)

Through our social media presence and blogging, we’ve created a much broader awareness of the Court of Protection and what it does: our hashtag is #NotSecretCourt. The vast majority of people don’t (and won’t) attend hearings: they learn of the court’s work only through published judgments and media reports.

Few members of the public ever read published judgments – and they are in any case post-hoc polished explanations and accounts for the judgment, which can obscure the messy process by which the judgment was arrived at – the dead ends explored, the arguments from counsel that didn’t work, the questioning that went nowhere, the thinking-aloud reflections of the judge pondering the case. It is precisely seeing how the decision is arrived at, and the real-life constraints within which the court must work, that is so illuminating. It is of course crucial for open justice that judgments are published – we wish more were! – but they are no substitute for observing a hearing.

Journalists are supposed to be the ‘eyes and ears of the public’ – but comparing media reports of the cases we observe with our blogs about the same cases, we are struck by the huge differences. Compare for example the media reports of the case of the woman with agoraphobia ordered by the court to give birth in hospital with the blogs from our contributors, who included a woman with agoraphobia, a medical ethicist, and some midwives. A journalist cannot be expected to see or hear court proceedings (or read a judgment) from the perspective of a midwife, a consultant obstetrician, a doula or a person with agoraphobia – each of whom brings her or his own unique personal and professional experience to bear, and each of whom can speak authoritatively to a specialist constituency, able to engage with the issues with expertise and sophistication.

We believe that open justice is vital in the Court of Protection not least because of the human rights issues involved. Over the course of the year we’ve covered, for example:

Covid-related issues: Is it in P’s best interests to be vaccinated against covid (yes, here; no, here)? Are a care home’s rules about visiting arrangements during the pandemic a violation of P’s human right to family life (here and here)?

Life-sustaining treatment: Should P continue to receive clinically assisted nutrition and hydration? (yes, here; no, here) Should P have their leg amputated against their wishes when not amputating will mean that they die? (yes, here; no, here)

Choices in childbirth: Should women who don’t want to give birth in hospital, or be induced, or have caesareans, be compelled to do so, by force if necessary? (See one lawyer’s take on this here.) Is it in the best interests of a learning disabled woman (wishes unascertainable) to have a caesarean? (here)

Engaging in sex: Does a woman with dementia have the mental capacity to engage in intimate relations with a man in her care home? (here) Can P can be provided with support to access a sex worker? (here) And we’ll shortly cover a case that originated in the COP and is soon to be heard in the Supreme Court, live streamed): does capacity for sex include the understanding that the other person must have the capacity to consent to sex, and does in fact consent, before and throughout the sexual activity?

Deprivation of Liberty: Does P have the mental capacity to decide where he lives or can he be deprived of his liberty, against his wishes, in his own best interests? (here) If P is deemed not to have capacity and says he’s “incarcerated against my will” and wants to return home, how long and on what basis can the court keep him in what he calls a “prison”? (here and a similar case here) If P isn’t able to express her wishes, but a family member who loves her wants to care for P at home, on what grounds can the state keep her in an institution? (here)

When can the state compel P to take medication that he’s refused by hiding it in his tea? (here); or restrain P to ensure he or she has the surgery they’re resisting? (here and here); or invade P’s privacy by keeping a video-monitoring device on him day and night? (here)

In a democratic society, these sorts of decisions for vulnerable and disabled people should rarely be made behind closed doors.

The future

We’re extremely pleased with what we’ve achieved so far in such a short space of time. We’re also exhausted! Happy, exhilarated and excited, yes. But also exhausted.

We’re still unfunded: we paid out of our own pockets for the (modest) costs of website hosting and logo-design. We’ve done all the work of building and maintaining the website ourselves. Five days a week, it’s still one of us who scours the listings for the Royal Courts of Justice, First Avenue House and the regional courts – correcting the errors, formatting them consistently, tweeting them to the three thousand people who follow us on Twitter, and selecting the most ‘interesting’ or ‘accessible’ for ‘Featured Hearings’. We’re not looking for funding (we value our independence) but it does mean there’s only so much we can do. We’re thrilled that Kirsty Stuart and Claire Martin have joined us.

We didn’t really plan the achievements of our first year – we reacted to circumstances, pushed on various doors to see which ones opened, took the opportunities that presented themselves, and pursued the issues we cared about most. I imagine next year will be much the same, but with more of us actively involved in the core group.

We’re celebrating how much we’ve achieved and looking forward to the challenges of the future – which will of course include how to manage open justice when the courtroom buildings are finally fully open and hearings move back, in whole or in part, into physical rather than virtual spaces. We’re hoping the courts will work with us to continue to facilitate open justice after the pandemic as they have done during it.

Happy First Birthday to Us!

Celia Kitzinger and Gill Loomes-Quinn are the co-founders and co-directors of the Open Justice Court of Protection Project. Celia tweets as @kitzingercelia and Gill as @GillLoomesQuinn

Photo by Stephen Wheeler on Unsplash

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: