Covid vaccination and a Christmas visit

By Jordan Briggs, 21 December 2021 (with addendum by Celia Kitzinger)

This hearing (COP 13793235), conducted over Cloud Video Platform (CVP) before Deputy Circuit Justice Rogers at Lincoln Family Court on Friday 17th December 2021, focussed primarily on whether it was in the best interests of a young woman (PH) with a severe learning disability who lives in a care home to be vaccinated against COVID 19. 

There were two additional matters: 

  • whether it was in PH’s best interests to visit her mother for two weeks over the Christmas period, and;
  • where PH should live next, given that her current care home has served notice to the local authority that PH must leave the care home. (This was reserved for a later hearing.)

On the matter of vaccination – which occupied most of the hearing – the applicant Clinical Commission Group (CCG) (represented by Luke Berry) took the position that Covid vaccination was in PH’s best interests. So too did the Official Solicitor (Dr. Oliver Lewis), who represented PH’s best interests, and PH’s father (the parents are no longer married to each other), who appeared as a litigant-in-person. 

Only PH’s mother (represented by James Pantling-Skeet) opposed Covid vaccination for PH.  

She was concerned about the possibility of severe side effects, especially because of concerns about how vaccination would interact with her daughter’s epilepsy medications). She also believes that PH may have “natural immunity” and that she is in any case a healthy young adult who is unlikely to suffer from a severe form of the disease.

Factual background

PH, who is twenty-five years old, has a “severe” learning disability, epilepsy and a congenital chromosomal abnormality.

All parties agree PH lacks capacity to conduct this litigation (which is why the Official Solicitor is appointed on her behalf).  All parties also agree that that PH lacks capacity to make a decision about receiving the Covid-19 vaccination. Final declarations had already been made relating to both litigation capacity and subject matter capacity in directions orders, and were not rehearsed again at the current hearing. 

Until 2014, when she was 17, she lived at home with her mother.  Since 2014 she has been living in a residential home, but maintains contact with both parents. PH’s mother lives nearby with her 21-year-old son (PH’s brother), and visits PH from time to time. PH’s father lives overseas, but maintains contact with PH via video-link.

PH is unvaccinated against almost all forms of disease. Indeed, the only inoculation which PH has ever received (an influenza vaccination administered in 2020) was given in error, after her mother’s directions not to administer the vaccination were not followed. Accordingly, PH is not vaccinated against coronavirus. 

In outline, the history of proceedings is as follows. In May 2021, PH became eligible to receive the coronavirus vaccination. In June 2021, the CCG made an application to the Court of Protection that receiving it was in PH’s best interests. Considerable delay ensued. A hearing listed for 13 October 2021 was adjourned (at the mother’s request) and a subsequent hearing date was fixed (for 17 December 2021). That hearing was made all the more urgent when, on 5 November 2021, PH’s residential home served notice to the local authority with respect to PH’s placement.  Her unvaccinated status was a “catalyst” for the care home to take this action.  They stated that they could no longer continue to safely provide care to an unvaccinated resident.  However, their service is pivoting to provide services to people with greater need for care than PH in any event, so whatever the outcome of this hearing in terms of PH’s vaccination status, a new placement would need to be found.

Against the background that PH’s ongoing care and residence was jeopardised by her unvaccinated status, and with her mother seeking Christmas contact with PH despite rapid spreading of the omicron variant of coronavirus, the Court of Protection sat to determine what was in PH’s best interests.  

Further to the mental capacity assessment carried out by professionals involved in her care, there is no suggestion that PH understands what the vaccine (or indeed any vaccine) is or what it is used for.  She has not made any statements in relation to the vaccine and how she feels about it and it is the view of the professionals that she does not understand what or how vaccination works.  She has however been generally amenable to medical interventions and one of her carers has expressed the view that PH is “the only person who gets excited about hospitals and doctors”.  

Unlike people in some other vaccination hearings, no restraint or coercion will be needed to vaccinate PH, and no order authorising force was required, since it was anticipated that she would accept vaccination.

The hearing

Access

Accessing the hearing was difficult. On the morning of the hearing, I emailed Birmingham County’s Court of Protection for a CVP link, but immediately received an automated response stating the Court would reply, but only within some 10 working days. I was advised (by Celia Kitzinger) that this is apparently routine, and does not necessarily mean that there won’t be a timely email with the link, but to phone the court for assistance if I hadn’t received the link by 20 minutes before the listed time for the hearing to begin.  In the event (not having received it and being told that HMCTS emails were down that day), Celia Kitzinger provided me with a different email address to obtain access.  Without her help I doubt very much that I would have been able to access the hearing. 

Further problems arose when I tried to join the hearing. I didn’t know that, on the CVP platform, observers must grant permission for their webcams and microphones to be used by CVP if they are to view others’ webcams and hear others’ voices.  Consequently, I denied webcam and microphone permissions, and could see and hear nothing when I first joined the hearing. Again, I liaised with Celia Kitzinger, who helpfully directed me towards the Court of Protection Transparency Project’s CVP User guide. I consulted that guide and, after re-joining the hearing with webcam and microphone permissions granted, I was at last able to watch the proceedings.  

When I joined, counsel were speaking with the judge to organise a schedule for the hearing. It was agreed that PH’s mother would give evidence first, followed by PH’s GP. Proceedings then promptly got underway. 

Witness evidence

PH’s mother

PH’s mother expressed the strong view that it was not in PH’s best interests to receive the coronavirus vaccination. Although she asserted in her position statement that she was “not an anti-vaxxer” and that she was “flexible” on the question of whether PH should be vaccinated, her oral evidence disclosed a vaccination-averse view resting on several assertions:

(1) She considered that clinicians had not undertaken an individualised risk-assessment to calculate the precise risks that vaccination would pose for PH. 

(2) She expressed concerns that vaccination could increase the heaviness of PH’s menstruation and intimated that vaccination should be withheld as a result. 

(3) She considered that neither the general public nor the court had access to complete information about the risks attendant upon coronavirus vaccination. Accordingly, she considered it inadvisable to administer the vaccination to PH because invisible risks could materialise and imperil PH. She expressed particular concern that, in her view, the ingredients of the Pfizer vaccination had been inadequately considered before the vaccination was widely distributed.

(4) She considered that PH didn’t need the vaccination in any event since PH is young and healthy and has a strong immune system, as putatively displayed by the fact that PH had never tested positive for coronavirus despite outbreaks in her residential home. Accordingly, PH’s mother felt that vaccination was unnecessary. 

Of course, the views of family members do not determine  decisions about what treatment a person will receive. As Rogers J would later put it, the focus here was on PH’s best interests, and her mother’s views are “neither determinative nor a veto” of what the court considers would be best for PH. 

The mother also addressed the matter of PH coming home for a Christmas visit.  This was clearly something she wanted very badly.  She described how she and her daughter “love each other dearly” and “have joy and pleasure in the time we spend together”. Her daughter she said, “loves Christmas decorations and a tree” – and visible on screen, in her home behind her, was a decorated tree with multi-coloured lights.  

Cross-examination of PH’s mother was principally conducted by counsel for the Official Solicitor. It focused mainly on whether PH should visit her mother’s home over Christmas, and what precautions would be taken to prevent PH contracting the virus, e.g. not going anywhere crowded, not using public transport. 

One relevant issue to the Christmas contact question was the vaccination status of the mother herself and her 21-year-old son, who also lives at home. For, if PH’s mother and her son were not vaccinated, the likelihood of their contracting and transmitting coronavirus to PH would be higher than it would be if they were fully or partially vaccinated. Accordingly, if PH’s mother and her son were unvaccinated, it may well not be in PH’s best interests to spend time with them whilst PH was unprotected herself.   

PH’s mother staunchly refused to disclose whether she or her son had been vaccinated, stating repeatedly that vaccination status was “confidential health information”. Despite direct questioning from counsel for the Official Solicitor and, eventually, from Rogers J himself, PH’s mother remained silent.  Foreshadowing later submissions, counsel for the Official Solicitor advised that he would invite the court to draw adverse inferences from PH’s mother’s silence. Other counsel had nothing to add. With that, PH’s mother’s evidence concluded. 

PH’s GP

Examination in chief of the GP began with the question: “What’s your professional opinion as to whether PH should be vaccinated”.  

The GP’s reply indicated a clear view that it was in PH’s best interests to be vaccinated against coronavirus to reduce her chances of death, hospitalisation and serious illness, and long covid.  He was particularly concerned about the new omicron variant because it is so much more contagious – a relevant issue given that PH is “a gregarious person” and not able to understand social distancing.

Cross-examination from Mr Pantling-Skeet covered a wide range of issues of concern to PH’s mother, including the risks of thrombocytopenia and risks associated with the Pfizer vaccine, in particular, for people taking medications for epilepsy, especially sodium valproate. The GP replied within the limits of the information available to him on the basis of PH’s medical records and the guidance he’d been provided with by NHS England and the Joint Committee on Vaccination and Immunisation (JCVI). 

Cross examination by Oliver Lewis (for the Official Solicitor) covered the question of why PH hadn’t previously received vaccinations (“because that was against the wishes of [PH’s mother]”; how she would cope with hospitalisation (“it would obviously be incredibly traumatic… very distressing for her”) and some questions relating to the proposed Christmas visit – focussing in particular on the additional risk for PH if her mother and brother are, in fact, unvaccinated.

Closing submissions

The CCG’s position on vaccination remained that it was in PH’s best interests to receive both doses of the vaccine and a booster dose.  “This court,” said counsel “is not a court of medical opinion”, citing Hayden J’s judgment in SD v Royal Borough of Kensington and Chelsea {2021] EWCOP 14 – in particular:

it is not the function of the Court of Protection to arbitrate medical controversy or to provide a forum for ventilating speculative theories. My task is to evaluate V’s situation in light of the authorised, peer-reviewed research and public health guidelines, and to set those in the context of the wider picture of V’s best interests.(§31)

Although there is no presumption in favour of vaccination in case such as theseHayden J in SD remarked thatthere is a strong draw towards vaccination as likely to be in the best interests of a protected party (§ 33)  Indeed counsel remarked that since Hayden J made those comments in February 2021, the situation has only developed: there are now new variants – omicron as well as delta and the original virus.  

Taken in the round, counsel submitted that a clear body of medical evidence supports vaccination, and warns of a real risk of PH becoming seriously unwell if she’s not vaccinated and contracts Covid-19.

This was supported by PH’s father.

For PH’s mother, James Pantling-Skeet argued that there is no presumption in favour of receiving the vaccination and that the burden of proof is on the person saying that someone should receive it.  This requires a decision specific to the person at the centre of the case, not a generalised approach. PH’s mother was her primary carer for 17 years and has an understanding of her from the mother-daughter relationship, as opposed to the viewpoint of professionals. She was there when new drugs for epilepsy were trialled on her daughter and witnessed what impact they had on her at the time. She’s understandably very concerned that this vaccination may put her at risk of similar issues arising again.  “The crux of it from [the mother’s] perspective is that she still does not feel there’s been an appropriate individualised risk-assessment for PH”, and consequently she wishes to “continue with the prevention measures that have served her well until now, combined with her natural immunity”.

For PH via the Official Solicitor, Oliver Lewis said that there is no medical evidence to suggest any clinical reason why PH should not be vaccinated – that “clinically and legally it’s quite straightforward”.  Dr Lewis said that the question of individualised risk assessment was a “red herring”: that there is a pre-vaccination checklist and that “there has been a risk assessment, Your Honour, and it’s been done in front of you in this court”.  Finally, although the court has a duty to take PH’s mother’s views into account, Dr. Lewis submitted that “it’s obvious that she doesn’t get to veto medical decisions”.

Judgment on vaccination

When the court reconvened at 2.15pm, Rogers J gave judgment on whether it was in PH’s best interests to receive the coronavirus vaccination. After setting out the facts, Rogers J commented that it was “unacceptable” that this hearing had incurred such delay – that, as PH had become eligible for vaccination in May 2021, to say that this case was “overdue for a decision” was “putting it at its lowest”

Before continuing Rogers J praised James Pantling-Skeet, a solicitor who had said at the outset that he’d never advocated in the Court of Protection before: he was doing so today because of the illness of the barrister in the case who had (ironically) contracted Covid.  Rogers J commenting that Pantling-Skeet had “demonstrated conspicuous skill in his conduct of the case”, especially in light of how little time he had to prepare his advocacy. Indeed, Rogers J remarked that he would “never have guessed that [Pantling-Skeet had never advocated in the Court of Protection before], because his obvious skill and attunement to the approach of this Court was very clear”.

Moving to the best interests issue itself, Rogers J retained a tight focus on PH’s wellbeing rather than her mother’s views. Rogers J firmly warned against “imput[ing] wishes or feelings or values simply because the close carer or relative has personal views or values of one sort or another”, and dismissed her mother’s suggestion that PH would “almost inevitably” have “expressed the same views as her mother” if she had capacity to do so. Rogers J noted that there was simply no evidence at all of PH’s own views, and to speculate on them would not be right.

Continuing to address the mother’s contribution, Rogers J commented that PH’s mother “was reluctant to disclose either her own or her son’s vaccination status”. This withholding was, the judge considered, “utterly untenable” and “unhelpful and obstructive of a proper investigation”. He found that she and her son “are on the balance of probabilities NOT vaccinatedThis is relevant to the issue because it has undoubtedly, in my view, coloured her overall approach”.

The judge doubted whether PH’s mother’s approach to vaccination was as flexible as she’d represented in her position statement, suggesting that the fact that PH had only ever received one (accidental) vaccination was “indicative of a principled rather than issue specific approach” from her mother. He described PH’s mother’s objections as “honest but immutable” and “genuine but without medical foundation”.  

Before turning to PH’s GP’s contributions, Rogers J endorsed and repeated the SD refrain: that the Court of Protection’s role was not to arbitrate medical controversy or ventilate speculative theories, but rather to take an individual, fact-specific approach to non-capacitous persons. In this connection Rogers J dismissed PH’s mother’s suggestion that the court possessed incomplete information about coronavirus, remarking that there exists a “robust and reliable” body of medical and Public Health guidance which it would be quite wrong to disregard. Frankly, the judge remarked, “[t]he court as decision-maker is bound to pay close attention to JCVI and MRHA and Public Health England”.

The judge then turned to the evidence from PH’s GP, describing him as “impressive and a GP of some experience” whose “authoritative” evidence had described “profound” advantages for PH in receiving the vaccination. Dismissing PH’s mother’s view that there had been no individualised risk assessment for PH, the judge considered that this GP and other health professionals had properly focused on PH herself, and had been questioned extensively in their analyses. From that questioning there had emerged a unanimous view among the health professionals that, while there may well be small disadvantages for PH in receiving the vaccination (e.g. possibly heavier menstruation), overall the “clear conclusion” was that it was PH’s best interests to receive the vaccination. 

Indeed, Rogers J noted that PH’s learning disability, lack of self-awareness and place of residence placed her at the very highest risk level of serious infection. 

Accordingly, the judge  decided that it was in PH’s best interests to receive her first dose of the vaccination “as soon as possible”, with subsequent (and booster) doses to be administered also to PH without there being a need to return to the Court of Protection. It was, the judge considered, merely “good fortune” that PH had not become unwell already in the pandemic, and not at all indicative that vaccination was unnecessary in the circumstances.

With judgment given on that issue, James Pantling-Skeet asked for a short break to take instructions from PH’s mother on the issue of Christmas contact. The judge obliged, and stated that court would reconvene at 3.30pm.

Reflections

At that stage, I had to leave the hearing to attend to a prior commitment. Professor Kitzinger offered to  provide the write-up for the remainder, and I am obliged to her for doing so. Yet even without watching its conclusion, I found it extremely instructive to observe the hearing. Three matters warrant mention.

(1) I was impressed by how sensitively the court handled the controversial issue of coronavirus vaccination. I think it’s right to remark that many who resist coronavirus vaccinations do so on ideological or political grounds, and form something of an ideological minority in society today. How the court handles such minorities surely impacts its legitimacy: if a court rode roughshod over those with minority views, those individuals may lose faith in the court’s fairness and could consider its decisions illegitimate. As a result, I was glad to see Rogers J stress that the Court of Protection is not concerned with airing medical controversy, and instead ground his reasoning so firmly in what was best for PH. Rogers J observed respect for PH’s mother throughout, even when describing her views in no uncertain terms as entirely medically unsound. Such dignified treatment of all, especially in controversial cases, is wholly welcome and important.

(2) Relatedly, I welcomed how much the court recognised the mother’s love for PH. The warmth of that relationship was remarked upon by Rogers J, counsel for the Official Solicitor and counsel for the mother. Recognition of that love seems important for two reasons. First, it implied that ultimately the court was working with rather than against the mother, toward the same end (i.e. trying to keep PH safe), and that the court was merely supporting her caregiving role rather than supplanting it. This appeared to be helpful for the mother in the hearing, and may help her to manage the distress she must feel from her views about PH’s best interests being overridden. Second, and connectedly, recognising the present warmth of the relationship between PH and her mother may help sustain it through this difficult period. It’s likely that PH’s mother will find it difficult to see her daughter vaccinated against her wishes, and PH may perceive that discomfort as a distressing disturbance in their relationship. However, sustaining that mutually loving relationship is no doubt in PH’s best interests, and supported by recognition of the sincerity and longevity of the mother’s love.   

(3) Finally, I was impressed by the skilful advocacy throughout proceedings. It is trite but true that advocates should be able to think on their feet, and James Pantling-Skeet’s skilled performance despite late instruction was a Mr masterclass in that regard. Especially so during final submissions when in my view Mr Pantling-Skeet made the mother’s case as convincing as could reasonably be expected, owing to careful representations of applicable law (e.g. rightly remarking that there is no legal presumption in favour of vaccination) and forensic selection of helpful facts (e.g. that the mother’s 17-year custodianship of PH made her uniquely well-placed to assess PH’s needs and interests). Furthermore, during proceedings I obtained written advocacy from counsel for the Official Solicitor in the form of two Position Statements (PS). (The first was the Official Solicitor’s original PS for this hearing. The second, triggered because only four days before the hearing PH’s mother filed her own PS and requested Christmas contact, was updated to respond to the same and reflect the very latest epilepsy-related coronavirus vaccination science). The Statements were clear and profoundly persuasive, and analysing their composition will undoubtedly uplift my own drafting skills. Once again therefore, observing a Court of Protection hearing has proved profoundly helpful for my professional development. 

I now hand over to Celia Kitzinger to address the Christmas contact issue and residence.

The Christmas Visit  (Celia Kitzinger)

Counsel for PH via the Official Solicitor (Oliver Lewis) had taken instruction over the lunch break on the matter of PH’s proposed 2-week visit to her mother.

The Official Solicitor wanted me to emphasise at the outset that there’s obviously real love between PH and her mother, and the Official Solicitor would like to say that PH should be with her mother over Christmas, but there are seven reasons why this would not be in her best interests”. 

The seven reasons were:

  1.  If PH were vaccinated tomorrow (as seemed likely), it would be two weeks before it became effective, i.e. it wouldn’t “kick in” until 7th January.
  2. The Court is entitled to infer that PH’s mother is unvaccinated (because it would help her case to say that she and her son were vaccinated); sending PH to an unvaccinated family poses increased risk compared with sending her to a vaccinated family.
  3. The mother reported that PH’s 21-year-old brother is “coming and going” from the family household, without being able to say where he would be coming and gong from, and this means there is no robust shielding plan.]
  4. PH is more at risk now than previously because of the new omicron variant.
  5. It was entirely accepted that PH would enjoy a visit to her mother’s house.  However, of magnetic importance is the fact that PH’s learning disability mean that she’s not able to anticipate events such as going home and seeing her mother for Christmas, so she’s not looking forward to it, and will not be disappointed not to be able to do it, in the way that someone who has no cognitive impairment, or a mild cognitive impairment would.
  6. There are no contingency plans in place for how PH would be cared for if she got covid while at her mother’s home, or if her mother got covid, or if there was an outbreak in the care home and she was unable to return there at the end of the two-week period.
  7. The future residence for PH is as yet unknown.  Prospective new care home providers will have to assess her, and the best place for them to do that is in her current care home rather than at her mother’s home.

For these seven reasons, and “with a heavy heart”, counsel did not believe that it was in PH’s best interests to visit her mother over Christmas.  It’s “a small sacrifice to lower the risk of her catching covid that could be fatal”. A representative of the care home had earlier said: “Our staff view is that if she goes home she’ll enjoy spending time with her mum… but we would also be sure to give her a very special Christmas at the care home”.

I got the impression that neither of PH’s parents had expected arguments against PH visiting her mother for Christmas.  The father said that in his view “I can’t see that circumstances have changed massively”, despite omicron, from previous occasions when PH had visited her mother.  He also thought that PH’s brother could be open to discussion about how to mitigate the risks – perhaps by staying with his girlfriend, who lives nearby.

Mr Pantling-Skeet asked for another adjournment to discuss the situation with his client (PH’s mother) and – perhaps – with the brother.

And Oliver Lewis suggested that if there was to be a break in proceedings, it would be useful to see if – now that PH was to be vaccinated – her current care home would be willing to extend her residence there until the end of January.

On recovening, we heard from the legal director for the care home who now stated they were willing to keep PH’s placement open through to her second vaccination (so for another 8 weeks), on the understanding that the local authority would make arrangements for her to move to her new care home the following week.  She expressed “disappointment” with the local authority’s communication so far about new placement possibilities.

The legal director had also reminded Oliver Lewis that PH would have to isolate in the care home for 14 days on return from a visit to her mother.  Oliver Lewis added that as an eighth reason why a Christmas visit was not in PH’s best interests.

A social worker for the local authority said that “since notice was served, we have been actively looking for an alternative placement. We can’t give a time frame because it can take from 2 days to 2 years.  It’s not easy and straightforward”.

The judge interjected: “this mustn’t drag on for two years!” – and then invited James Pantling-Skeet to address him on the matter of the Christmas visit.  As counsel for PH’s mother, James Pantling-Skeet engaged with each of the eight points raised by Counsel for the Official Solicitor as reasons why a visit to her mother was not in PH’s best interests.

  1. The fact that vaccination is not effective for two weeks needs to be weighed against the psychological and emotional benefit of visiting her mother, and both PH’s and her mother’s right to family and private life.
  2. It’s difficult to quantify the risks to PH of being with people who are vaccinated vs. those who are not vaccinated. Even vaccinated people can transmit the virus.
  3. PH’s brother has agreed that he’s happy to reside with his girlfriend while PH is at his mother’s home.
  4. There are risks from omicron in either the care setting or in the family home – and the previous judge did rule that it was in PH’s best interests to spend Christmas with her mother.
  5. The Official Solicitor’s view is that PH is not able to anticipate and look forward to visiting her mother.  Although it might seem that way reading the papers, the mother does feel she would look forward to a visit: when they speak on Facetime PH says, “See Mummy”, indicating some expectation of contact.  This is the mother’s insight from being PH’s mother and knowing her in the way that she does.
  6. Contingency plans in the event of illness are as they have always been before Covid.  The mother would work with her local support network to seek help, taking into account who has a negative test result.
  7. The matter of residence has now been sorted for the short-term
  8. The fact that PH will need to isolate on returning to the care home is not ideal, but the benefits to her of having contact with her mother over the Christmas period would outweigh the disbenefits of isolation.

Counsel for the mother also said that the mother would comply with whatever testing was required to assure her daughter’s safety in the view of the court.

Judgment on Christmas visit

The judge saw merit in six of the eight considerations raised by the Official Solicitor: the brother’s role is now “diminished in scope” (because he’s agreed to stay with his girlfriend rather than with his mother) and the judge did not attach much weight to the seventh point (that future care homes would benefit from PH being on site) and chose to “disregard” that.   

This was, he said, “an acutely difficult matter” but it would be “incompatible with the decision I took earlier this afternoon if I were to sanction something that would undermine PH’s safety, simply to assuage [her mother’s] understandable desire to spend Christmas with her daughter.  Neither regular testing, nor the removal of [Brother] is sufficient.”  

He was also concerned about where PH would live in future (“it would be a disaster if in February we were no further forward”) and a next hearing to address this is listed for 20th January 2022.

As the hearing ended, plans were in train to vaccinate PH within the hour.

Jordan Briggs is Denise Pannick Scholar at Gray’s Inn currently studying on the Bar Vocational Course at City Law School, London. His previous blogs on legal matters include a brief history of legal aid and a 3-part series on the government’s response to Covid-19 and the rule of law and he’s previously blogged for the Open Justice Court of Protection Project (“Elective caesarean in her best interests“). Jordan tweets @JordanBr1995

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

Photo by Liviu C. on Unsplash

Experience of a new witness in the Court of Protection

By Catriona McIntosh, 17th December 2021

I am a Consultant Clinical Neuropsychologist for The Disabilities Trust and director of Yorkshire Neuropsychology. I specialise in assessments and rehabilitation provision for people who have acquired brain injury. I provide expert witness reports to the court but until recently, I have not been to court. 

Like many psychologists, I have for many years heard words of caution about moving into court work.  Some colleagues have commented on not wishing to go into this field and others expressed worries of the adversarial nature of cross examination and anxiety that their work may be negatively evaluated. 

These cautions are not unfounded.  As an anonymous brain injury case manager states in a review of the role of an expert “the reputation of an expert can be lost in an instant. We are all only as good as our last case, as the careless, hubristic, unlucky or over-worked can find to their cost” Furthermore, the case of  AMDC v AG[2020] EWCOP 58, where the expert’s evidence was found to have substantial deficiencies under cross examination has highlighted the need for experts to both have expertise in their field as well as adequate understanding of their role to the court. (See the blog about this case from observers, “When expert evidence fails”). 

But my first experience of being a witness in the Court of Protection made me realise that whilst it is important to undergo training in being a witness and to safeguard against these risks, it is important to not lose sight of the value a health professional can contribute to court cases. Perhaps in urging caution without considering the benefits there may be a risk of putting off clinicians from contributing to a field where they have a valuable role to play. 

Recently I was sworn in to give evidence in the Court of Protection as a witness of fact for the first time. I must admit that that the court date being discussed and being told that it would be helpful if I could possibly attend had not made me realise that I was to be giving oral evidence as a formal witness. I had attended for a short time at a previous hearing and contributed briefly in a less formal way. However, the benefits of identifying what I was being asked to do only the day before I was due in court meant at least there was not much time to overthink it. 

The issue in the case was whether P should be admitted into a rehabilitation setting against their will under court order and I was to be cross examined on my assessment of P and my recommendations for how that admission ought to take place. 

I am pleased to share that the experience was interesting and not intimidating. I was asked questions by three different advocates, and the judge, with the aim of confirming and expanding aspects of my opinion. One advocate quite reasonably asked if the issues I had raised in an email for the court to consider meant that I had hesitations about the appropriateness of the admission. It was a valid query but I was able to share a view that we should never take the serious step of depriving someone of their liberty without adequate consideration of whether it was required and justifiable. This did not mean that that I am expressing an opinion on the appropriateness of the action, as I felt that this was for the court to decide. 

A key focus of the case was on the way admission should proceed and whether the ‘graded admission’ which I had proposed was appropriate or not. I found the process of giving evidence helpful in putting across typical needs of someone with autism and that a graded admission allows consideration of anxiety around adjusting to change. That whilst there may be justification for a person to be deprived of their liberty against their wish, that does not mean that the process of this cannot be conducted with due consideration of their autism needs.

I understood that social services were initially in disagreement with this idea. The concern was that it would be better to arrange P’s admission quickly and that doing so more gradually would lead to an increase in their anxiety, and ultimately that they might refuse to be admitted. I was able to posit; however, that the situation would be no worse than the current one of P refusing to attend with a possible police escort being considered; and that a graded approach increased the chances of their engagement and gave them some control over the process. The court accepted this and plans were approved that authorised P’s admission but in accordance with a carefully designed plan that took a graded approach, with shorter visits prior to overnight stays to try to acclimatise P to the plan.

In fact, in the end the graded process did not aid the situation. But it nonetheless felt ethical for the team to have at least tried what I considered to be a less restrictive approach for P and one that tried to place their wishes more centrally in what was happening-an approach that is key to the person-centred nature of safeguarding in the Care Act. 

At no point in court did it feel confrontational or like I was being attacked when I was being asked questions in court. Indeed, the entire process felt respectful, even if a little alien in its formality. 

On reflection, attending the COP as a witness of fact was a valuable experience before being called in an expert capacity and helped to build my confidence in my skills in defending my opinion and how I can help court consider a patient’s neuropsychology needs. 

Dr Catriona McIntosh is Consultant Clinical Neuropsychologist for Yorkshire Neuropsychology and The Disabilities Trust. She tweets @Catrionamcinto1

“At loggerheads”: Habitual residence, best interests and life-sustaining treatment

By Celia Kitzinger, 15th December 2021

This was an urgent application concerning withdrawal of life-sustaining treatment from a 73-year-old woman (AA) who’d collapsed at the family home while preparing dinner on 2nd November 2021.

Her family had performed CPR until paramedics attended and took her to hospital, where she was admitted to the Intensive Care Unit (ICU).

Following a series of assessments and examinations, she was diagnosed with a significant hypoxic brain injury, which has caused irreversible brain damage.  

She’s sedated, breathing spontaneously albeit with high levels of ventilatory support and receiving clinically assisted nutrition and hydration (CANH). There does not appear to be any dispute that she lacks capacity to make her own medical decisions.  

The treating clinicians consider that there is no realistic prospect of recovery, and that it would be in AA’s best interests for life-sustaining treatments to be withdrawn and for her to be treated with palliative care only. (They had already, separately, decided that cardio-pulmonary resuscitation was not an “available option”.)

The family disagree and want all treatments continued (and also do not agree with the DNACPR decision).  They had asked whether there was any alternative NHS or private hospital in the UK willing to treat her: at present none has been found.  

 The hospital trust made an urgent application to the Court of Protection for a declaration that continuing life-sustaining treatment was not in AA’s best interests. 

The evening before the day of the hearing, the family stated (via one son’s solicitors) that arrangements were in place to transfer AA overseas for treatment via air ambulance (funded by the family).  Neither the air ambulance nor the hospital to which it was proposed to transfer her had been in touch with the clinical team caring for her.

The hearing

The hearing was before Mrs Justice Knowles on the afternoon of 14th December 2021.

The applicant trust was represented by Rhys Hadden of Serjeants’ Inn.

It had been proposed that Emma Sutton, also of Serjeants’ Inn, should be counsel for AA, via the Official Solicitor.  This was eventually confirmed, despite opposition to this appointment from a family member in the hearing. 

One of AA’s sons was formally represented by Varun Zaiwalla and it was initially stated that the family “spoke with one voice” such that, in effect,  this barrister represented all family members.  

Jurisdiction and habitual residence

The first issue the court had to address was whether in fact it had any jurisdiction over AA, who is a Pakistani national.  

The family has argued that the court has no jurisdiction because AA is a Pakistani national and is domiciled in Pakistan.

The Trust position is that AA is habitually resident in England.  Until her injury, she was living with her sons in England. She has an NHS number and has been registered with a GP since November 2018.

Both the Trust and the Official Solicitor drew the judge’s attention to paragraph 7, Schedule 3 of the Mental Capacity Act 2005.

Scope of jurisdiction

7(1) The court may exercise its functions under this Act (in so far as it cannot otherwise do so) in relation to—

(a) an adult habitually resident in England and Wales,

(b) an adult’s property in England and Wales,

(c) an adult present in England and Wales or who has property there, if the matter is urgent, or

(d) an adult present in England and Wales, if a protective measure which is temporary and limited in its effect to England and Wales is proposed in relation to him.

(2) An adult present in England and Wales is to be treated for the purposes of this paragraph as habitually resident there if—

(a) his habitual residence cannot be ascertained,

(b) he is a refugee, or

(c) he has been displaced as a result of disturbance in the country of his habitual residence.

paragraph 7 Schedule 3, International Protection of Adults, Mental Capacity Act 2005.

The phrase “habitual residence” is not defined in the Mental Capacity Act 2005, but has been previously addressed by Mrs Justice Knowles in another case: The Health Service Executive of Ireland v IM & Anor [2020] EWCOP 51.

In respect of AA, Knowles J ruled that she had “reason to believe” that AA was “habitually resident” in England and that – at least on an interim basis – she was persuaded that this was so.  

She later asked for a third-party disclosure order of AA’s medical records from 2018 up to the date of her admission to ICU.  It’s likely that AA was in regular communication with her GP since she has long-standing hypertension, type 2 diabetes and gastroesophageal reflux which was treated with medication.  Ongoing contact with an English GP would, the judge said, “be relevant to” and “part and parcel of the factual matrix” pertaining to habitual residence.

Even if “(said Knowles J) “I am wrong about that [that AA is habitually resident], 7(1)(c ) gives jurisdiction to the Court of Protection if the person is present in the country and the matter is urgent” (see Re QD (Jurisdiction: Habitual Residence) [2019] EWCOP 56 at para 30 for consideration of the matter of ‘urgency’). 

Matters concerning AA are “urgent” because there’s an immediate need for protection in the form of detailed case management orders, and for the Official Solicitor to be properly engaged to act for AA, and for an independent expert to be appointed to assess her.  It’s also “urgent” because of the information available to the court regarding proposed transfer arrangements by air ambulance, without any liaison between treating clinicians and ambulance personnel or overseas hospitals.

I am not satisfied at this moment in time that I can avoid exercise of my jurisdiction on an urgent basis. That is my decision”, said the judge.

Parties

The judge addressed one of AA’s sons who was visible on screen throughout the hearing – alongside three other adults (and – at times – a baby) who I took to be family members.  This was not the son who was formally represented by Varun Zaiwalla.

This (unrepresented) son had earlier interrupted the hearing during the opening submission by Emma Sutton, counsel for the Official Solicitor, when she was expressing concern about the air ambulance that had apparently been ordered to collect AA without “even a skeleton plan for a vulnerable adult who’s in ICU to travel from [City] to [City] via [City]”.  

His intervention was something along the lines of “the ambulance is coming on their information” but he was quickly cut off by the judge who said, “I do not tolerate interruptions in my courtroom. It is discourteous.”  Before withdrawing he said: “I would like an opportunity to speak. I am not represented”.  

Turning to him now, the judge asked whether he wanted to be represented as a separate party (rather than via Varun Zaiwalla with the rest of the family, as had been previously indicated).  

I want to help my mother as much as possible”, he said.  “We disagree with the opinion of the Trust and the treatment plan they have set out”.  He said the family had obtained other treatment plans, from India and Turkey. “She is slowly improving,” he said. “These patients take about a year to recover.  Maybe it is constraint of resources, I don’t know….”

The judge clarified that what she was asking was “who should be a party to the proceedings.  Is it the case that if I join your brother, there’s no need to join anyone else, because the family all agree?”  

I wasn’t convinced that he really understood the question. He referred to people’s availability and people being away on holidays.

The judge said: “I’m going to join your brother via Varun Zaiwalla, and if there’s any difference of opinion between now and the next hearing, let the court know, and we’ll join you.”

That seemed satisfactory at the time but later unravelled when proposed dates for the next hearing were discussed (5th and 6th January 2022 before Mr Justice Poole).  

The son said that his preferred counsel (naming one of the UK’s most highly regarded advocates) would not be available until the following week.  “I was told by you that family speak with one voice”, said the judge – clearly surprised that the son was apparently seeking separate representation.  “Yes, but we can have different representation and counsel,” he replied. 

The judge fixed the hearing for those dates nonetheless “because I am not prepared to leave it uncertain”.  She was, she said,  “anxious to resolve this on behalf of AA sooner rather than later” and finding an available judge in the context of the “intense scrutiny over a truncated period of time” can be difficult.

My Lady,” protested the son, “my mother is not in a condition where there’s any urgency. She’s not in pain. This is not an urgent case at all. They are making it out to be that, but it’s completely false”.  

Second opinions and expert evidence

Counsel for the Trust said that they had tried to obtain a second opinion from another hospital and informed the family of this, but the family had subsequently contacted that hospital and asked them not to provide a second opinion as they did not consider them to be an independent body.

Counsel for the Official Solicitor was now proposing an independent expert unconnected with the Trust, Dr Chris Danbury.  

Is the instruction of Dr Danbury in dispute?” asked the judge.

The instruction is opposed on the basis that it shouldn’t be necessary in light of the expert evidence and medical reports already obtained”, said Varun Zaiwalla.

Counsel for the Official Solicitor said that a second opinion was “clearly necessary… because of the seriousness of the decision about whether clinically assisted nutrition and hydration should continue”.  She also referred to the national Guidance on Clinically Assisted Nutrition and Hydration for adults who lack capacity, pointing out that best medical practice requires a second opinion (paragraphs 35-39 and section 2.8).  The cost would be borne by the Official Solicitor and it would not involve any delay as Dr Danbury was able to visit AA the following day and produce a report by 22nd December 2021.  “It’s quite unusual,” she said, “to have an objection where there’s ‘necessity’, no delay, and no cost to the party”.  Moreover, Dr Danbury is “a leading expert”.

The  (unrepresented) son then also opposed the appointment of Dr Danbury – in part, he said, because “he’s an intensivist – he’s not even a neurologist. How can he give an opinion?”  More fundamentally, “I don’t trust any doctors in this country. I have already obtained second opinions from India and Turkey I am satisfied with”.  

The judge made a short ruling on the matter.  “This court,” she said, “is going to be asked to make extremely serious and difficult decisions”, including “treatment withdrawal resulting in inevitable death”.  Under those circumstances, “it is absolutely clear to me that all reasonable steps should be taken to get a second clinical opinion”.  Dr Danbury is “a well-known intensive care specialist with the necessary expertise to assist the court with these questions”.  Although the family say evidence has been obtained from other sources, these are “based abroad and have not had the benefit of seeing AA in the flesh”.  She approved the instruction of Dr Danbury.  

There was some subsequent discussion about the status of the opinions the son says he has already obtained.  “If [son] has already obtained opinions, he is at liberty to present them to the court”, said Rhys Hadden (for the Trust), “although whether they will be accepted as evidence is another matter.”  Responding to some indication from the family that they might engage an overseas doctor to assess AA, he pointed out that this would need to be the subject of an application to the court.

In another contested case concerning treatment withdrawal, which I observed and blogged about earlier this year, some family members instructed a doctor to conduct a remote assessment without the permission of the court, the hospital, or the patient’s wife (who took a different position to them on best interests): (Z v University Hospitals Plymouth NHS Trust & Ors (Rev 1) [2020] EWCOP 69).   This is clearly something the courts want to avoid families doing in future, since it breaches the court rules on the instruction of experts.

The Air Ambulance

Counsel for the Trust intervened to say he’d just received an email from the Trust who reported that a private air ambulance company, engaged by the family, had phoned them to say that they were planning to arrive on site today at 5pm.  

It was shortly after 2pm at this point.  

Judge:      Mr Zaiwalla, what’s the position?

Counsel:  I don’t have up-to-date instructions.

Judge:      At the moment there is no clinical liaison at all with the air ambulance staff and the doctors who are treating her. That is, if I may say so, the bare minimum.  This court is not going to be bounced into arrangements like this.

The judge called a 20-minute adjournment for counsel to the family to take instruction: it actually extended for nearly 30 minutes.  The family liaised with their counsel by telephone, leaving the video-link running.  Although we couldn’t hear what was being said, everything about their body language and gestures signalled – at different times – anger, disbelief, panic and frantic distress.

When the hearing resumed, Varun Zaiwalla said that there seemed to have been a “misunderstanding” on the basis of which the family had sent the air ambulance to the hospital.   They had apparently believed that the Trust (or the Hospital staff) had agreed to the transfer.  He apologised on his client’s behalf.

The judge was gracious in her response. She said she understood, that the situation is “very difficult”, that “everyone’s upset and I completely understand that. I don’t criticise them”.  

Rhys Hadden (for the Trust) said that “to promote clarity” and “in an effort to assist” he suggested an addition to the order before the court, to the effect that “’AA is to reside in and receive care at the Hospital and must not be transferred or removed pending further order of the Court or agreement between the parties in writing, and that must include the Official Solicitor’.  I don’t say that to be heavy-handed.  I do think it will promote clarity.”

The matter was not so easily settled, however. Later, when asked to address the unrelated matter of the Official Solicitor’s role in the proceedings, the (unrepresented) son returned to this issue and said “the ambulance was not sent out of the blue. I have email after email after email asking when I was going to make arrangements to transfer the patient. The only question was who was going to pay, and I said I would.”

And still later, this air ambulance was raised again. At around 4.30pm (half an hour before the projected time for the air ambulance transfer to be effected),  Varun Zaiwalla said that his client had “evidence that the Trust has agreed to transfer AA today by air ambulance…. As such the court should go ahead and authorise that transfer today”.  

The judge asked for that evidence and after a few fragments of email correspondence were read out in court,  she said she was not willing to engage with a few emails out of context but would need the full correspondence, which had not been submitted to the court.  “No.  Produce all of it NOW if you want to make that application.”  

This led to another adjournment of around 25 minutes,  following which Varun Zaiwalla returned only to say, “I have no more submissions to make with regard to the emails”, suggesting the judge might want to hear from the (unrepresented) son.  The judge declined:  “I don’t have any of the primary material in front of me. I don’t have the full run of emails before me, so I don’t think I’m going to be assisted by oral submissions on this topic.

Appointment of the Official Solicitor

At some point in the hearing, in response to an unrelated question, the son had said that he opposed appointment of the Official Solicitor: “I don’t think the Official Solicitor should be allowed”.  

Once the matter of the air ambulance had been cleared up (and before it returned again as an issue), the judge picked up on this and addressed Emma Sutton, the proposed litigation friend for AA via the Official Solicitor – who despite not having been formally appointed played a full role in this hearing: “Why do you say AA requires to be represented, and represented by the Official Solicitor?

Emma Sutton explained the role of the Official Solicitor in the Court of Protection.  When someone lacks capacity to conduct proceedings, as AA clearly does, she requires a litigation friend.  In serious medical treatment cases, that is often the Official Solicitor.  In a situation like this one, where there is a clear divide between the Trust and family members, and where the (unrepresented) son says he doesn’t trust any doctors, it’s not feasible to have a family member act as litigation friend.  The Official Solicitor “doesn’t take sides” and will “provide an objective analysis”.  Her appointment is “inevitable on the particular facts of this case.”

For the Trust, Rhys Hadden agreed that “the case does require an independent, impartial litigation friend, and at the moment no alternatives are put forward”.

For the family, Varun Zaiwalla said, “I don’t believe there’s anything I can fairly say against the submissions of Ms Sutton”. 

The judge asked the unrepresented son for his views.  He first spoke about the air ambulance saying, “We want our mother to have treatment overseas”.  “Yes,” said the judge, “I understand that. I am asking you about the Official Solicitor.”  “The Official Solicitor is not independent”, he said. “We would prefer a relative of ours should be in his place.”  (I’m pretty sure he used “he”, which struck me as odd at the time.)

The judge gave a short ruling. It was “self-evident that AA requires to be represented within the proceedings”.  The son’s view that the Official Solicitor is not independent is “mere assertion”.  In fact, “the Official Solicitor is independent, does not take sides and no one else is advanced as a litigation friend who can act impartially”. Therefore, she said, “I decline to endorse [the son’s] assertion against the Official Solicitor acting for AA.”

Ceilings of treatment

The Trust was seeking an order that it was lawful and in AA’s best interest to impose a ‘ceiling of treatment’ in relation to cardiovascular support and renal replacement therapy – “on the basis that it would be clinically futile”.  (My understanding is the clinicians should not give “clinically futile” treatment in any event, and that the court cannot require them to do so, so this wording seemed odd.)

A doctor responsible for AA’s care was available to give evidence on this matter, but in the event she was not called as a witness.

Varun Zaiwalla argued that it was “not appropriate for the court to set a ceiling on what treatments may be appropriate in future exigencies” and that it should be left to the clinicians to make decisions as the relevant circumstances arise.

The judge expressed concern that “in circumstances where it’s transpired that the Trust and the family are at loggerheads, what reassurance does the court have in the interim that if her condition deteriorates, it won’t end up in this court out-of-hours?”

For AA, Emma Sutton’s position that there was not enough (written) evidence before the court on these points, and “the court should ordinarily be asked to simply ‘hold the ring’ at an initial hearing pending a comprehensive analysis of a patient’s best interests and not make very serious decisions ‘summarily’ which have consequences to the continuation of life”. 

After a brief adjournment for Counsel for the Trust to take instruction, Rhys Hadden said the Trust was “content to effectively withdraw that application”. 

Of course”, he said, “any decision on future treatment will be subject to the individual clinical judgment of clinicians involved as part of best interests consultations, which – if time permits – will involve consultation with the family and with the Official Solicitor”.

The hearing ended around 5.15pm.

Reflections

I was left with a strong sense not only that the family and the Trust were (as the judge put it) “at loggerheads“, but also that the family was effectively ‘on a different page’ about how serious treatment decisions are made in a patient’s best interests, and how the Court of Protection works to ensure that.

Many families, of course, falsely believe that ‘next of kin’ can make decisions for incapacitated adults, and also that if they have money to pay for particular interventions or treatments for a loved one, there can be no reasonable objection to them doing so.

Discovering that this is not so within the medico-legal context in which decisions are now being made for AA is clearly a source of shock and dismay for this family – who seemed at times incredulous at the direction the court was taking.

This is likely to be a painful and difficult process for the parties, especially the family, as the case moves towards a next hearing on 5th and 6th January 2022.

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

Photo by Brandon McDonald on Unsplash

Family witnesses in court: Four reflections on Re AH (A Rehearing)

By Upeka De Silva, Rhiannon Snaith, Claire Martin and Jenny Kitzinger

Update, 14th December 2021: The judgment has now been published here: Cambridge University Hospitals NHS Foundation Trust v AH [2021] EWCOP 64 (13 December 2021) It includes information from court documents not read out during the course of the hearing and we have taken the opportunity to make some corrections to this blog post.

Introduction by Celia Kitzinger

A woman in her 50s, AH, has been an inpatient at Addenbrooke’s Hospital, Cambridge, since the end of December 2020, where she was admitted, on an emergency basis, suffering with severe symptoms of Covid-19. She no longer has Covid-19 but the virus has left her with extensive and serious brain damage. She’s in a minimally conscious state.

The question of whether it is in AH’s best interests to continue to receive mechanical ventilation was addressed back in August 2021 by Mr Justice Hayden (blogged here), who decided that it was not. He said: “I make it clear that ventilation should be discontinued by the end of October 2021”. The full judgment is here: Cambridge University Hospitals NHS Foundation Trust v AH & Ors (Serious Medical Treatment) [2021] EWCOP 51).  

Her family appealed and the Court of Appeal found in their favour.

However, the appeal was not granted on the basis of any of the four substantive grounds of appeal: (1) that Hayden J had given insufficient weight to AH’s wishes as recorded on the ReSPECT form; (2) that he’d failed to appreciate the importance of her religious and cultural values; (3) that he’d not adequately considered her past and present wishes and feelings; and (4) that he’d failed to give sufficient weight to her Article 2 right to life. All those grounds of appeal were dismissed.

The appeal was allowed on the basis of procedural unfairness, relating to a visit from Mr Justice Hayden to AH, after the hearing had concluded. (For an account of the Court of Appeal hearing see this blog post, and you can read the full judgment from the Court of Appeal here: Re AH (Serious Medical Treatment) [2021] EWCA Civ 1768).

This meant that a re-hearing was necessary.

Following a relatively short ‘directions’ hearing on 29th November 2021 (blogged here), there was a hearing before Mrs Justice Theis on 7th and 8th December 2021. This blog post offers some reflections on that hearing from four observers and is written in advance of the judgment.

Counsel were Simon Miller of Harcourt Chambers for the family, acting pro bono through the Bar Pro Bono Unit, Nageena Khalique QC for AH via the Official Solicitor, and Katie Gollop QC for Cambridge University Hospitals NHS Foundation Trust.  

An updated expert medical report on AH (by Dr Chris Danbury) was now before the court. His findings were clear. After almost a year in intensive care, there was no prospect that she would improve further. She would never be able to live without mechanical ventilation. She would never emerge from the minimally conscious state. There was, in his view, evidence of deterioration since he had last assessed her in August 2021 and AH is now in a terminal decline of consciousness. She is dying.

This was also the view of those treating her. Evidence was given in court by two treating consultants, Dr A (Consultant Intensivist) and Dr B (Consultant Neurologist), and by Ms C (Matron of Adult Critical Care).

The family view was radically different. Three of AH’s children and her sister gave evidence of having seen slow improvement in AH’s condition in the four months since August 2021. They see AH as more alert and aware, and as more able to communicate with them. They provided videos of their interactions with AH which they considered illustrate that improvement. Dr Danbury had reviewed this videos but does not see them as providing evidence of improvement in either her physical or cognitive function. (We’ve blogged before about the use of videos as court evidence, and the differences between families, experts and others in what is “seen” in them.)

There is, then, a very stark difference between clinicians and family in how they see AH.

The Trust position (now supported by the Official Solicitor) is that withdrawing ventilation under controlled conditions with AH’s family around her in a peaceful and prayerful atmosphere is in her best interests. The alternative may well be, in their view, a sudden death unattended by family. In Dr Danbury’s view, a catastrophe will occur at some point “and is likely to be sudden, unexpected and most likely without any opportunity for her family to get to the ICU in order to be with her while she dies“.

The family position is that it is in AH’s best interests to continue to receive mechanical ventilation. They believe she is showing signs of improvement and that she wants them to “fight for her“.

Four observers reflect on the hearing, bringing a range of different perspectives and experiences to their descriptions of what they witnessed in court.

1. Family testimony: Relieving the burden, by Upeka De Silva

I observed incredibly brave family members giving powerful testimony in support of what they believe their mum (or sister) would want. 

In doing so, they did not hold back or censor what they had experienced in hospital. Although they accepted that she had generally had excellent care, they also voiced their frustrations about what they’d experienced as poor practice. It must have been cathartic to be able to speak out about it in this public and respectful setting.

[Amended text from here to end of this section, 14th December 2021] Before reading the judgment, my primary concern was that their feedback should be heard and valued not just by the Trust in this case but by others too, so that their experiences could be fed back with a view to improving practice.

Reading the judgment  (especially paras 26, 33, 39, 89) really brought home to me – more than in the court hearing itself –  that specific and detailed evidence was provided about the excellent care that AH had received while being ventilated for over 300 days.

Providing this level of care during a pandemic is particularly noteworthy and it is useful that this has been made public.

It is deeply unfortunate that the family still experienced distress about AH’s care. I appreciate it is not easy, but I am always hopeful that families and clinical teams can find ways to work together in the best interest of the patient.

Taking the burden from families

The barrister for the Trust (Katie Gollop) rightly reassured the family member who struggled to answer a question about what his mum would want, that one of the benefits of having the case heard in the Court of Protection is that it passes the responsibility of making the difficult decisions to the judge. 

This is not to minimize the immense burden of duty that families must feel when giving evidence and advocating for a loved one, but it must provide some relief. 

With this in mind, I would like more to be done to alert families to this valuable avenue of support when faced with disagreements about life-sustaining treatment decisions and end-of-life care.

Research shows that families often consider court hearings to be a deterrent to pursuing what they believe is right for their loved one.  But here, as in other reported cases, it’s clear that for this family the court hearing gave them the reassurance that they had done everything they could possibly have done to fight for their mum.

The importance of advance statements

My take home message from this hearing, as in so many others in the Court of Protection, is that we should all prepare for possible future lack of capacity.

We can write down what makes our life worth living – and describe the circumstances under which life would not be worth living for us – so that if we become incapable of making and communicating decisions for ourselves, our family and all those caring for us, can hear our voice. 

Documenting our preferences in this way, using an Advance Statement, in a calm and thoughtful manner, rather than having our wishes interpreted by clinicians, gives us the opportunity to comprehensively convey what it is that matters to us and what it is that we are willing to endure.

It was argued at the Court of Appeal (but not during the re-hearing) that AH’s preferences were in fact documented in a ReSPECT form. However, in para 46 of the Court of Appeal judgement it was held that the ReSPECT form:

 “is directed, as is clear from the title, to emergency care and treatment. It is not directed to long-term treatment and so provides very little assistance to whether AH would want treatment to continue in her current condition which is very far from an emergency.”

Both a ReSPECT form (for emergencies) and an Advance Statement (for a much wider range of possible situations) are invaluable tools which enable individuals to get the treatment and care that is right for them while also supporting clinicians to make genuinely person-centered best interest decisions.

If AH had completed an Advance Statement explaining her religious, cultural and family values, her family may not have had to endure as many grueling questions about she would have wanted. 

Even though they cannot demand a clinically inappropriate treatment, having written evidence of AH’s wishes, would have made the family’s powerful evidence even stronger.

Free Advance Statements and Advance Decision forms can be found at:  www.mydecisions.org.uk

Upeka de Silva is Policy Officer for the charity, Compassion in Dying. She tweets @de_upeka


2. “What would I want for myself?” Facing up to burdens of treatment, by Rhiannon Snaith

This was the first time I’ve observed a Court of Protection hearing. It’s very different from what I’d seen in criminal courts (when completing work experience with a local newspaper). It was very intense, and you can’t help but get emotional and think “what would I want for myself?” or “what would I do if this were my loved one?” and go back and forth in your mind.

What really struck me about the case was that it gave me information about the potential burdens of treatment, giving me tools for thinking about the question “what would I want?” It made me confront some issues which I hadn’t really faced before, and maybe that few of us consider in depth. 

Usually, you just think of being in Intensive Care as being ‘out of it’, but the doctors in this court hearing really described how being mechanically ventilated might feel for this patient who is in a minimally conscious state and has many other complications (e.g., paralysed, muscle wastage and severe neurological deficits).

Sometimes, it felt as though the doctors could be emphasising the burdens of ICU treatment to persuade the family to agree to letting the patient die – but that doesn’t stop their accounts of the potential burdens from being true.

The intensivists who gave evidence explained that Intensive Care was accepted and justified as a temporary measure if it helps stabilise a patient and give time for assessment and/or recovery – but they clearly did not see it as a humane long-term solution. Nor is it a practical one because, as the independent expert commented, “in intensive care, generally if you are not getting better then you are getting worse”.

The concern in this case was that the patient had been mechanically ventilated for almost a year and given her severe brain injuries and dependence on long term ventilatory support, combined with her specific and complex care needs, there was no prospect of her ever leaving ICU.  

The treating team felt she was deteriorating and was very likely to die soon (potentially in a sudden and uncontrolled manner). All three clinicians involved in her care gave evidence that emphasised the burden of the treatment when there was no balancing benefit of recovery. It was also clear that all three were personally distressed by witnessing, or being involved in, what was done to this particular patient. 

One of the treating doctors talked about ICU being a “dehumanising” environment for patients and referred to research showing that people who recover sufficiently to report on their experiences can be left with Post Traumatic Stress Disorder.[i]

Another doctor involved in treating this patient became quite emotional describing what was done to AH, outlining the distress of desaturation, having to be turned every few hours, and the intrusion of personal care associated with double incontinence.  He said that, when there was no hope of recovery, “we know that many people in this situation do elect not to continue with the treatment that continues their life.”  In this case, the situation was made worse because she might not understand what was being done to her, and damage to her memory meant she could not even recognise her caregivers. 

The ICU matron (who gave evidence as well as the doctors) explained that, because of her brain injuries “despite being with us for almost a year, none of the team are familiar to her. She is meeting strangers every day”. They now try to avoid hoisting her into a chair (to help with skin integrity) because “the whole process of hoisting, even when someone understands, is frightening and AH was looking very frightened when we did that”.

This comment hit home as I’ve worked in care homes and was hoisted as part of my training. Even for me it was not a nice experience. It made me think that it must be so much worse if you don’t understand what is going on and don’t have any control over your own body. I‘ve certainly seen how hoisting can be a really upsetting and scary process for some residents, even in a routine care setting.

On top of this, AH is subjected to physically intrusive medical treatment such as the mechanical ventilation itself and associated interventions. This was highlighted by evidence from the independent expert, Dr Danbury (the 4th clinician to give evidence in the court, but one who was not part of the care team). He said that deep suctioning, which this patient requires regularly, could be particularly painful. It has been described by some survivors as “akin to having a red-hot poker pushed down your throat”. This witness also described how patients who have been severely ill and in ICU for a long time report terrible disorientation and “psychological scarring”.

Summing up in her closing statement, Katie Gollop QC (representing the Trust) highlighted the relentless and repeated interventions carried out on AH. She referred to witness evidence to highlight that the treatments necessary to sustain this patient’s life were ‘tortuous’ and a ‘torment’ for AH. 

The family do not necessarily accept the clinicians’ descriptions of the ‘fear’ ‘pain’ & ‘psychic anguish’ this woman might be suffering. In any case, the decision must be a balanced one that also draws on what she would have chosen based on her own beliefs and values, and the acknowledgment of the comfort and pleasure she appears to derive from family visits.  

For me, however, this case left me with a clearer sense of just how excruciating some treatments might be and that time in ICU is not a neutral ‘suspension’.  It highlighted the importance of grappling with this information and thinking for oneself what one might want and trying to inform the right decision for others. 

Rhiannon Snaith is currently studying for her MSc in Research Methods at Cardiff University, in preparation for starting her ESRC PhD scholarship on “The Role of Journalists in Reporting End-of-Life Decisions”, supervised by Professor Jenny Kitzinger. She’s just started tweeting @Rhiannon_Snaith and is looking forward to joining in online discussion of law, ethics, and end-of-life.  


[i] I was only able to attend the second day of the hearing so did not hear this witness myself, but benefited from access to Jenny Kitzinger’s (anonymised) notes from her observations of the first day. As recording is not allowed in court, these quotes are as close to what was actually said as possible, but are unlikely to be verbatim


3. The problem with ‘splitting’, by Claire Martin

“Splitting is a very common ego defense mechanism. It can be defined as the division or polarization of beliefs, actions, objects, or persons into good and bad by focusing selectively on their positive or negative attributes.”

Psychology Today May 2020

I am a clinical psychologist, working in the NHS. I get on with some patients better than others. Sometimes there seems to be a better ‘match’ or what I offer or the way I relate seems to suit some people better than others. There can be a tendency, for us all in the caring professions, to feel that the people we get on with less well are ‘hard to engage’ (instead of ‘I find it hard to work with this person’), or ‘difficult’ (instead of ‘they are asking questions I find it difficult to respond to’) or who exhibit ‘challenging behaviour’ (instead of ‘their behaviour challenges my skills’). We can put the blame for people not liking what we do on them, instead of looking to see how we could do things differently or handing over to someone else. Psychological processes and patterns of relating are happening all of the time, between us all, and do not reside only in our patients and clients. We all bring our own experiences and ways of being to our professional lives. Difficulties can arise around communication and how we relate, rather than ‘mistakes’ as such. Problems with communication are the most frequent formal complaint to NHS Trusts.

AH’s family spoke from their experience and their hearts when describing her. They all clearly love AH dearly, desperately want her condition to improve and for the court to rule that she should continue to be ventilated and allowed to survive for as long as possible. They think AH also wants this. 

Their evidence that they witness purposeful communication that demonstrates an understanding of her situation (that she requires ventilation to survive) is at odds with the evidence from AH’s treating clinicians and the expert witnesses who have assisted the court. 

Balancing all of the evidence and deciding whether it is in AH’s best interests to continue with life-sustaining treatment must be a hugely challenging decision for the judge to make. 

At the end of the hearing, I was left with a feeling of unease about the way in which the family was psychologised when they spoke of differences in the quality of care they experienced from different members of the treating team. 

Part of the family’s evidence had been about their experiences of different doctors and nurses involved in AH’s care. Their evidence was mixed – one doctor in particular was described as ‘caring’ and  ‘patient’ with AH. Another doctor was experienced as ‘just wanting to pop the tube out’ and ‘not patient’ with AH when assessing her. 

The eldest son said: “Dr A’s judgment cannot be trusted” – contrasting him with Dr B who “makes a lot more conscious effort to engage with mum and to listen to us”.  Looking across the courtroom at Dr B he said, “I know you care about my mum, Dr B, I know you do.”

They also said of some nurses: ‘they’re busy, they talk at [AH], others talk to her. There’s a difference. Sometimes, I have seen, some nurses ask her a question and before she’s had time to answer – I can see she’s going to answer – they’re gone’ (AH’s sister). 

Whether the professionals involved think that they do or don’t fit this characterisation is not the point. This is how the family experiences their interactions with them and observes their interactions with AH. They did not characterise all professionals in the same way, and were keen to point out excellent care and some staff who have a ‘gentle manner’. 

In closing submission, Katie Gollop QC said[i]

The COVID pandemic has been brutal and caused situations of emotional brutality up and down the country. At a different time, there would have been scope for more family visiting, perhaps scope for more fruitful discussions and the ability to come to terms with the nature of the illness. All of those things have been denied to this family. It had seemed in August that some family members had come to terms with the reality of the situation. Since then, psychologically, in terms of absorption of that information, that capacity has been lost.  How can somebody so full of life, such a powerful person, right at the heart of this family,  suddenly be taken away from them and reduced to someone totally dependent on others when before she had others dependent on her?  This is unbearable and unacceptable to them.  Family members have developed coping strategies to enable them to bear the unbearable. They think she’s getting better, when all the evidence is that she is not. They believe she’s accepted her situation, when the evidence is that she doesn’t have the mental capacity to understand her situation. They say she tells them what she wants, when all of the evidence is that she does not  know what she wants because she does not have the capacity. They say she’s a fighter and wants to fight on, when the reality is that air is painfully pumped down into her lungs through a tube down her windpipe.  They say she can improve, when there’s been no improvement.  They say she needs more time, when there has already been four months more time and Dr Danbury was very clear about her condition and prognosis. Sadly, very sadly, [one of AH’s daughters] who was very capable of understanding the situation in August makes some of the most unpleasant accusations against the hospital – as unpleasant as they are baseless.  There is the splitting mechanism in action: Dr B the good doctor, Dr A the bad doctor.  All this is understandable, but Your Ladyship is concerned with AH and not with the family.”  

I don’t know if the family is mistaken about seeing improvement and an ability to understand and communicate in AH. That picture is certainly at odds with the clinical assessments presented by the team caring for AH and by the expert witnesses. 

But even if we assume that the family is desperate to see what they want to see in terms of progress for AH, and has misinterpreted ‘signs’ from AH and over-valued change as recovery,  it does not logically follow that experiencing Dr B as caring and Dr A as uncaring is unfounded – or indeed ‘splitting’. 

That would be to assert that, because the family is wrong (according to the NHS Trust) in their assessment of AH’s condition, progress and prognosis, they cannot are trusted to report accurately their experience of how people relate to them and to AH. And, moreover, that the reason they report different experiences with different clinicians is due to  psychological difficulties that reside in them.

The term ‘splitting’, in particular, can be used pejoratively as a defense within systems of care and applied to people given a label of ‘personality disorder’. It is not a term to be used lightly, or by those untrained to apply it.

If the court relies on expert medical evidence to make submissions and declarations about physical health conditions, it is not appropriate to bandy about psychological terms and attach them to parties without expert psychologist/psychiatrist evidence – which is then open to testing in court.

Good reflective practice – and the NHS Constitution – require that we all, in the NHS, respond to concerns, feedback and patient experiences with humility and a willingness to learn about our ways of working and relating. 

Commitment to quality of care

We earn the trust placed in us by insisting on quality and striving to get the basics of quality of care – safety, effectiveness and patient experience – right every time. We encourage and welcome feedback from patients, families, carers, staff and the public. We use this to improve the care we provide and build on our successes. ( NHS Constitution)

Suggesting that the family is lacking in objectivity because they are in some way psychologically compromised serves the purpose of undermining and discrediting their evidence.  This was not necessary to powerfully argue the Trust’s case that ongoing life-sustaining treatment is not in AH’s best interests. The medical evidence stood alone. 

This could be described as a ‘power-over’ position – appropriating powerful psychological terms (not likely to be familiar to the family in their actual meaning, and without any expert evidence to support the claim) in a submission that cannot be challenged. 

When can we, as a patient or relative, say that care is not good-enough without that concern being psychologised away? 

Or raise that the way this person speaks to me/my family member is not experienced by me as caring/compassionate/helpful without that being recast as a problem within me?

A tweet from Kathryn Mannix, author of With the End in Mind and Listen: how to find the words for tender conversations addresses this point and her analysis should be read by everyone in the caring professions. She says she has been the doctor whose words were not understood as she intended them to be by patient and family, and she takes responsibility for that miscommunication. She posted photos of this text (from her book, With the End in Mind (pp. 114-115) )attached to a tweet. The text describes an interaction between herself and Maggie, the partner of Fergus who has just died under her care.

These two pages of text were posted by Kathryn Mannix on Twitter (5th June 2021) attached to her tweet.

So, “I have been the doctor“, says Kathryn Mannix, “whose words were relayed by a v sick patient to a relative, & what the relative heard was not what I said. But it WAS what the patient/family understood from what I said, so I was responsible for that miscommunication. Communication matters.

I was pleased that counsel for AH via the Official Solicitor said both that she believed Dr A to be a “compassionate clinician”,  and also that she “does not accept the Trust submission that there’s been an attempt at splitting”.

Counsel for AH asked whether – without any aspersions being cast against the two clinicians the family say they have difficulty with – some adjustments could be made:

Placing AH’s wishes and feelings at the forefront, how difficult would it be to ensure those two clinicians are not involved in her care? It is best to ensure no friction at this time.  I wonder if that is beyond the resources of the Trust in the circumstances of this case.”

Sometimes it may be necessary to accept that we are not the person a family needs at a particular time.  And we can do that without pathologizing the family in a situation like this.

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


[i] We are not allowed to audio-record hearings in court.  This quotation is an amalgam of the three versions of what Katie Gollop said that were written down/typed by Claire Martin, Jenny Kitzinger, and Celia Kitzinger.  We recognise we each had slightly different versions, but the differences were small and do not seem to us to be significant for the purposes of the argument here (e.g. the difference between “come to terms with the reality of the situation” vs. “understood the reality of the situation”).  This is true of all the other quotations in this piece.  They are unlikely to be verbatim, but they are as accurate as we can manage under the circumstances.



4. Human connection, communication and capacity: Family experience of trying to determine AH’s wishes, by Jenny Kitzinger

For me, the most moving, and complex, part of this hearing was the family accounts of visiting AH – and how this informed what they thought should now happen.

In the witness box at the Court of Protection at this re-hearing on 7th and 8th December 2021, AH’s adult children and her sister vividly described their experiences at the bedside, explaining how they felt AH had become more alert and engaged since the hearing before Hayden, J back in July 2021.

Their accounts illustrated powerful human connection. The family were also adamant that they’d established meaningful communication with their mother/sister, and that AH conveyed a consistent wish that they should keep fighting for her; she does not want to die.

In this blog I record what the family reported and ask: How can this help with ensuring that AH’s feelings are factored into the best interests decision? And what is the relationship between human connection, communication and capacity? 

I focus on this partly out of my academic interests in best interests decision-making and the resonance this family’s experience has with the stories of relatives of other severely brain injured patients interviewed for our research at the Coma and Disorders of Consciousness Research Centre.

But the reason I found myself so intensely engaged with this family’s account was because parts of what they said reminded me of (and sometimes contrasted with) my own experience of being at the bedside of my sister, Polly Kitzinger, while she was in a Minimally Conscious State for two years after a road traffic accident in 2009. It also connects to my ongoing experience of making best interest decisions for her as her court-appointed deputy for Health & Welfare.[1]

The clinicians’ perspective – emphasising the burdens of treatment and lack of capacity

Clinicians giving evidence in court (and the reports read out from other members of the multi-disciplinary team) describe AH as predominantly either sleeping, or neutral (‘just lying there’), or when she is alert, often appearing tearful, fearful, anxious or in (psychic or physical) pain. Such distress was sometimes, but not always, linked to the necessary interventions she undergoes to be sustained alive in intensive care (as also highlighted by Rhiannon Snaith (above)). They emphasised that this independent, family-centred, very private woman would have to remain on a mechanical ventilator in intensive care for the rest of her life. She was likely to die soon, one way or another: the issue was not whether she would die, but how and when.

In so far as AH can communicate or understand anything at all, the clinical assessments suggest this is very minimal. A recent report from the specialist Speech and Language Therapist concluded that: “meaningful and purposeful communication remains extremely limited. If anything over last two months communication has deteriorated with increased signs of what appears to be distress”. She was never able to initiate communication or spontaneously express her needs. There was some simple command-following and someYes/No responses, but these were not completely reliable or consistent, and were not adequate to support functional communication or inform a significant decision.

The family perspective – emphasising human connection and communication

The contrast between the clinical accounts of AH and those offered by her family perspective was profound. Family members did not focus on deficits in understanding or communication: instead they focused on their mother’s fight to live, family love, mutual recognition, comfort, concern and human connection. They also talked about their mother making choices and communicating her wishes, including in response to family efforts to ask her about what she wanted in her current situation. 

One son, ‘K’, described how when he went in to see his mother she “lit up” and was “transfixed on me”. His reports that his aunty said “she’s looking at you, she recognises you…she’s really happy to see you”. He placed his head against her and “she was pushing her head against me. I had a comforting feeling…. She was giggling and smiling at me.” 

A daughter, ‘S’, described how, after coming back to the UK to see her mother after some time away: “You could see her emotion in her eyes… She cried when she first saw me, obviously, and she got to see her grandson. Her eyes fixed on him, she knew who he was”. During this visit she “felt like I was having meaningful discussion with her”. Later, when visiting her mother along with her sister, she told her mother about a deeply personal and sad recent experience in her own life: the three cried together, with her sister lifting her mother’s arm to place it around her.

It wasn’t all intensely serious: there was humour too. The oldest son, ‘A’, described a family visit involving “a cousin who was supposed to marry her when she was young”, who was joking by saying “come on, let’s go get married now you’re single”. “Oh my god, the smile on my mum’s face”, he said. “I was cracking up, I was laughing, she was laughing – you just know she’s dying of laughter inside”. Another time, “one of the patients farted really loudly: it was gassy, it was really loud, it was BAD. And I said, ‘that wasn’t you, was it Mum?” and she was smiling.

The family seem to be able to help AH feel relaxed and safe too. Family members described how they could soothe her to help her accept interventions. One particularly distressing scene was described in which AH’s youngest daughter, Daughter A, arrived while nurses were attempting to place a tube into her mother’s rectum. After gently talking to her mother to explain why it was necessary, her mother appeared willing to comply and “there were no more tears’.

The family were clearly skilled in trying to maximise AH’s opportunities to communicate by ensuring she was clean and comfortable, and was given enough time to respond (all elements recommended in professional guidelines). 

They are, of course, not coming in with painful instrumental goals (suctioning, hoisting, turning) – which might make her tense and overwhelmed. They were clearly engaging with her in empathetic, meaningful, sociable and familiar ways (including familiar religious or cultural rituals). They might also bend the rules: one son said he sometimes lowers his mask as “she communicates better if she can see my face”.

They had refined practices to try to ensure answers to questions were accurate (e.g. asking the same question in different ways) and they had developed routines to check for sources of discomfort, e.g. reporting occasions when asking about different parts of her body in turn had allowed them to detect, for example a hand twisted under the blankets, or the fact that she had soreness behind her ears. 

They also tried to ensure her choices to allow for pleasant experiences: anticipating what she might like based on their long familiarity and love for her, inviting her to nod or shake her head or to use tongue movements as they offered her choices about having her nails done, her hair dyed, or deciding, for example, what television programme to watch.

AH is clearly at the beating heart of this loving and devoted family and family time was created around her too (within some constraints due to Covid). Family members usually visit in pairs and there is an emphasis on including AH in conversations. AH’s sister described an interaction between herself, her niece and a nurse and how AH was part of that, commenting: ‘She actually belonged, and was not forgotten about’. The clinician’s view of AH made no sense to her: “I feel she’s communicating back to us. I find it really difficult to say she’s deteriorating. She’s just there. She’s there. I do feel that she’s there.” 

This contrast between family experience and clinical accounts is even more vividly described by the son who declared that in reading about his mum in the notes and public reports, “it’s like she’s just a corpse with a damaged brain and a machine attached to her – but this woman watches TV!”

I recognise much of what this family describe from my own experience of being at the bedside of my minimally conscious sister – and it is familiar from interviews with other families in this situation too (see examples on the healthtalk resource).

As family members, many of us will recognise how someone with profound brain injuries may nevertheless sometimes ‘light up’ when we enter the room and gaze unwaveringly at us, as if with great love or as if trying to communicate by telepathy. 

We also know how our sister, partner, child or parent can seem to absolutely trust us, and we can (sometimes) soothe them or help them stop struggling against a care intervention that we feel it would be best they receive. 

They may also appear to focus all their energies in an effort to communicate with us (or even to engage wih a phone call from another relative) and may share (or mirror) our own emotional responses, or burst into laughter as we joke around trying to lighten the mood. 

Minimally conscious patients can, at times, give meaningful responses to careful questioning, even if we can sometimes be unsure about accuracy, or responses are inconsistent (or very consistent with some questions but not others, perhaps)[2]. We have probably also all witnessed some staff who are patient and skilled in maximising all possible communication (and helped to add to family knowledge about good approaches), and others who seem impatient or disrespectful (talking over, not to, their patient).

The clinicians too accepted (in part) many aspects of what the family reported. Having seen videos of AH with her family or observed such interactions themselves, clinicians mostly accepted that the family were getting some connection with AH that was different from staff engagement with her.

Dr A said: “I accept the richness of their relationship and communication with her is different from that of all the treating team …I fully agree that the family have a richer substrate of communication with herThere is a shadow of AH left and it is focused on the people that she knew…Her family are ingrained on her”. 

Ms C, the matron, said The videos echo what I’ve seen at the bedspace when family visit. I’ve seen those interactions face to face as well”…

Dr B, the consultant neurologist said “there is no question, when the family arrive the level of distress goes down. ” 

The independent expert, Dr Danbury commented that it is common that people with severe brain injuries are more likely to respond to familiar faces and that “long term memory is generally preserved at the expense of short term memory [.. ] so it doesn’t surprise me family get the best out of her”.

The fact that family often “get the best” from a patient is well established in the clinical literature. That is why family are encouraged to be part of assessment processes and to report, or indeed video, their interactions. (See the RCP Guidelines.) The closing statement from counsel for AH via the Official Solicitor underlined the “clear and cogent evidence from the family, who know their mother very well”, emphasising the the fact that family may pick up on signs missed by professionals and that the family are attentive and observant. Family evidence must be factored into decision-making.

However, quite how family members interpret what they experience, and exactly what weight should be placed on what they learn from their mother, creates more conundrums.

Questioning the implication of ‘responses’ – the communication conundrum

Where clinicians differed from the family was in their views about the accuracy and consistency of AH’s “communication” i.e. whether expressions or gestures which appeared to indicate ‘yes’ or ‘no’ were always intentional, and, if they were, whether they really always reflect an understanding of the questions or issues being discussed. 

Dr B explained how in seeking to ‘test’ a patient’s understanding it was, without the right training, very easy to inadvertently cue something (e.g. in the way one read out the optional answers, placing emphasis on the correct answer). He also pointed out that “with a yes/no response you are already at 50% just by chance”. 

Although seeming more ambivalent about how to interpret AH’s emotional responses, members of AH’s care team also cautioned against always interpreting something as a ‘response’ when it could sometimes be observed happening ‘randomly’ when family were absent and no one was interacting with AH at all (e.g. ‘random tearfulness’). It was understandable that family members would read everything as ‘meaningful’ and construct a narrative around it, but this was not necessarily always the correct interpretation.

Some apparent responses to conversations were also explained away by the clinicians as potentially being ‘emotional’ mirroring rather than cognitive processing. A particularly excruciating discussion revolved about scrutinising one daughter’s report of explaining to her mother how she’d recently suffered a painful personal loss, and how her mother and she (and her other sister too) wept together, with her mother’s arm around her for comfort. Dr Danbury was asked to comment on AH’s tears in this situation. It was, he said, a “tricky” experience to interpret:

“But you could say – [Daughter S] and her sister were upset – the body language was one of sorrow and upset. It may have been that her mother was responding to the body language of her daughters rather than a true understanding of the words themselves. That is an alternative explanation. It is difficult to say that she [AH] understood [what was being said to her] as a multi-level statement.”

For the clinicians, there was nothing in the family’s experiences that undermined their view that AH could not understand her current situation, and also that she certainly did not have capacity to make a decision about it (including the sort of ‘supported decision-making’ that might work for some people). 

They made clear that an ability to respond emotionally should not be conflated with a cognitive capacity to understand, retain and weigh up information about a medical decision.

On the face of it family members were not arguing that AH had the capacity to make the decision about continuing mechanical ventilation. They were simply informing the court of her current wishes and feelings as they understood them on the basis of their prior and current knowledge of her. 

Counsel for the family was clear in his opening position statement that they were not disputing the clinical view that she “lacks capacity” in relation to the decision to be made by the court. However, at times this seemed quite ambiguous in individual family members’ testimonies or in their response to questioning. 

In part this was implied in the way family members challenged the formal clinical assessment of what AH could or could not understand and communicate, and when they made clear statements about what AH now thought and had somehow been able to make understood by her family e.g. “She’s grasped what’s happened to her: she’s accepted it” (Daughter S).

Most importantly family members repeatedly informed the court that they had asked their mother what she wanted in her situation and she had indicated that she did not want to die.

Clinicians stated that they did not feel it was appropriate for them to seek AH’s views on treatment decisions, as she lacked the cognitive capacity to respond in a way that could usefully inform (let alone determine) the decision. 

The family took a different view and had frequently asked their mother what she wanted to happen next, and were frustrated and upset by the apparent lack of respect for what they consistently heard from their mother. The way in which her children presented the question and understood the answer from their mother was unpacked in questioning, 

AH’s oldest son “A”, for example, commented as follows: 

Son AMy only interest is to give my mum what she wants. So I thought I would crack the question – “Do you want to be put at end of life, palliative care?” [ ] “Mum, doctors and nurses want to put you at end-of-life care, is this what you want?” – and you can see her [shakes head]Every time we ask her the same questions: “Do you want to return to Allah? Do you want to continue?” Every time without fail [shakes head]…[They say] “sorry but your mum doesn’t understand the question”. What do we do? It’s like banging your head against a brick wall” .

GollopDo you consider that your mother has the capacity to make a decision about whether ventilation should continue?
A: I personally believe that if you ask her that question, she’ll give you the answer.

This was echoed in the response of other family members, all of whom felt that AH had indicated a clear desire to live and had ‘capacity’ to answer the question about ventilation (although it was unclear whether they felt she had ‘capacity’ in the sense of understanding her true clinical situation). 

Gollop: Does your mother have capacity to make decision about whether or not her ventilation should continue?

Daughter S: Yes, if you ask my mum she will give you her answer.

Gollop: Do you think she has capacity?

S: Yes I do, I do think she has the capacity […]

GollopYou think she understands what is going on around her and she understands what her condition is like, and what it will mean to be ventilated for the rest of her life?

S: Yes, I know my mum’s aware.

GYour belief is that she chooses to continue to be ventilated?

S: I don’t think anyone chooses to be ventilated, I think my mum wants a chance to get better.

G: Every single doctor says there is no chance of improvement – do you reject that evidence.

SNo, but I know my mum doesn’t want to go onto palliative care.

Questioning in court tried to tease out whether the children themselves were able to address the risks that the experts believed faced their mother – not a choice between dying and living, but a choice about how she would die. Her children were very honest in their responses: this was not a question they felt they could answer. In questioning “S’ for example, the following exchange occurred:

Judge: The medical evidence is that your mother is not going to be able to come off the ventilatorWhat do you think her views would be if that were the position?

Daughter S: That is a hard question, because our mum has told us to not give up on her, and she’s told us to keep going, so I can’t answer that question for us. All I know is our mum…everything is about doing what our mum would want. Saying “yeah, she would want you to switch off the machine” – that’s not us fighting for her.

Similar issues were explored with AH’s son, “A’: 

Gollop: Have you read Dr Danbury’s report? There is a high risk of sudden unexpected death without her family there. A very high risk of dying alone. Passing away alone without people around her praying for her…

Son A: you can’t guarantee that…you just don’t know

Gollop: …The choices are continuation or withdrawal of mechanical intervention (in the hospital). One allows her to die with the people she loves around her, praying for her and the other puts her at a very high risk of dying alone.

After A indicated that he couldn’t really engage with that question, the judge intervened.

JudgeI’m going to have to face the reality. On one view of the evidence there’s a strong likelihood that will happen, so I think what you have to think about – if you want to – is what Ms Gollop is saying: that part of the component decision is to think what is in your mother’s best interests.

Son AI wish I asked her this.

And being gently pushed a little further by the judge to try to provide an answer himself, he added

It’s like saying would you rather be hit by a bus or would you rather drown – you don’t want either of them”.

He subsequently became tearful saying:

I would give up everything I have to look after my mum… What is the point in being a son if you’re not going to be one.” (Son A)

It was at this point that Katie Gollop QC underlined that the Court of Protection was there to ask and answer the question that the family were finding so difficult to address. The court, she said:

“..can take the burden of responsibility away from those who feel it so weightily and pass it to a judge. The hospital would never wish anybody who has the grace to participate in this process to feel that they are responsible in any way for the outcome.”

The judge underlined this point, the family love for AH was clear, she said, “that shines through”. There is no criticism of anything family has said or not said. The outcome is the responsibility of the court

Judge:It’s entirely my decision”.

It was hoped that the decision would be ready to hand down on the afternoon of Monday 13th December 2021.

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


[1] Polly had a ‘traumatic’ brain injury which has a different prognosis than AH’s type of injury. She was also much less physically compromised than AH and displayed (to me) a much higher level of distress than this family report. Polly left intensive care within weeks to move through high dependency, rehabilitation and into the long-term care system, emerging from MCS after two years. She has profound neurological deficits, still requires 24/7 care and lacks capacity to make decisions about any medical treatments.

[2] In my experience, it is easier to see the extent of a brain damaged individual’s lack of capacity to make particular decisions once they are more recovered and a relatively clear and consistent ‘yes’/’no’ communication is established. It is then that hope, deduction, facilitation or ventriloquism become less a part of the interaction process and gaps in understanding, processing, weighing or recall may become more starkly evident. It may also, however, at that point, seem to be possible to confirm earlier interpretations.

Elective caesarean in her best interests

By Jordan Briggs, 13th December 2021

This hearing (COP 1385977T), heard over Microsoft Teams before Mr Justice Moor in the Royal Courts of Justice on Thursday 9th December 2021, concerned whether an elective caesarean was in the best interests of a heavily pregnant, non-capacitous young woman (MP) who was detained in a hospital in the North of England under the Mental Health Act 1983, s3. 

The outcome, consistent with three clinical reports and MP’s own wishes, was that an elective caesarean was in MP’s best interests and an order was made to that effect. 

Factual background

In a short introduction at the beginning of the hearing, Counsel for the applicant trust outlined the case.

MP is in her twenties, and in her thirty-seventh week of her first pregnancy.

She has no history of previous mental illness but has recently developed acute mania, psychosis, aggression and lack of insight. For this reason, she was detained in a psychiatric hospital in a city in the north of England under the Mental Health Act 1983, s3. Although MP has improved somewhat since admission, she remains unwell. 

MP also suffers from gestational diabetes. This has caused her unborn child to grow very large (in the 97thpercentile).

Against this background, there have been several discussions about how MP should deliver her baby. Two consultant clinicians have agreed that MP lacks capacity to decide on mode of delivery, and further agree that an elective caesarean is in her best interests. This is because, given the large size of the baby, a caesarean of some sort would likely be required, and an elective caesarean is preferable to an emergency one because attendant on the latter are heightened risks of maternal haemorrhage and mortality. 

The hospital’s Clinical Director and Lead for Obstetrics further recommended that it was in MP’s best interests to undergo this caesarean under a spinal anaesthetic (a ‘spinal block’) as opposed to a general anaesthetic. A spinal anaesthetic, which is administered by injecting drugs into the subarachnoid space near the spinal cord, allows the patient to remain awake during the caesarean. Such consciousness is preferable to the unconsciousness induced by a general anaesthetic because it minimises risks of maternal vomiting and infant drowsiness, and enables the mother to see and feed her baby sooner.

Both MP and the father of her baby initially desired a natural (vaginal) birth. However, on being told that clinicians felt she should undergo an elective caesarean with a spinal block, MP (and now the father too) adopted the same view. Accordingly, the application before the court was rather straightforward: for the court to make the order sought by the applicant NHS Trusts, permitting them to perform a caesarean under spinal anaesthetic, with permission to give her a general anaesthetic if necessary (or if she requests it).

The hearing

The start of the hearing was delayed by about 15 minutes due to difficulties with getting everyone logged on and (in particular) sorting out the arrangements for the interpreter and MP’s partner, the father of her child, who was joining the hearing as a litigant in person.

The two NHS trusts were represented by Ian Brownhill (for the hospital that would deliver MP’s baby) and Fiona Paterson (for the trust responsible for MP’s mental health care).  

MP herself was represented (via the Official Solicitor) by Andrew Hockton.

Witness evidence

There were several members of the Trusts in attendance and ready to give evidence at the beginning of the hearing. However, and with the consent of all parties, the judge released them all except one – the hospital’s Clinical Director and Lead for Obstetrics (Dr A).

Counsel for the hospital Trust opened the evidence-in-chief by asking Dr A why a caesarean was recommended. However, as the judge pointed out, this evidence was already in the witness statement, which he had read and accepted. In light of that, counsel for the hospital Trust had no further questions.

Counsel for MP via the Official Solicitor briefly cross-examined Dr A on various matters. These included whether she herself would be administering the spinal block to MP (she would not: she wouldn’t be available on the day), the circumstances in which administration of a general anaesthetic may become necessary (if MP became anxious or distressed during birth; if the spinal block did not work; or if MP requested it) and how MP’s anxiety would be assessed during birth (physically and clinically, taking account of MP’s demeanour).    

The judge briefly intervened, asking whether a spinal block was the same as an epidural. Dr A replied that they were not quite, although the two are often conflated. (An NHS leaflet explains the difference.) With that, her evidence concluded.

Moor J then asked whether MP’s partner had any questions or comments. MP’s partner responded that, despite originally favouring a natural birth, he now supported the clinical recommendation that MP undergo an elective caesarean facilitated by a spinal anaesthetic. The judge received this warmly. 

Participation of MP

There was then a short break. Observers and other parties were asked to leave the video-platform so that Moor J could hear from MP herself, who was listening from her hospital bed with clinical staff in attendance. 

The judge had agreed to meet with MP despite saying at the outset that he was “slightly uncertain as to the purpose of the meeting”. He pointed out that what she said could not be “evidence”.  Counsel for the Trust said “I don’t propose you gather any evidence from her, but listen to her wishes and feelings”.  

This exchange has its origins in the recent Court of Appeal case, Re AH [2021] EWCA Civ 1798 – also blogged about here: “A life-sustaining treatment decision from Hayden J in the Court of Appeal and The most complex covid patient in the world”).  In Re AH, a family succeeded in their appeal against a decision by Mr Justice Hayden, Vice President of the Court of Protection, on grounds of procedural irregularity, because Hayden J had visited the patient at the centre of the case and one possible interpretation of what happened is that he treated what transpired at that visit as evidence in coming to his decision.  

The key message of Re. AH for those involved in the Court of Protection is a pressing need for guidance on judicial visits to the person at the centre of the case (e.g. Pressing need’ for guidance on judicial visits in CoP – McFarlaneThe black box of the judicial visit to P – the Court of Appeal’s concerns and requirements‘). 

Against this background, and over a period of some 10-15 minutes, Moor J visited with MP (without observers present) and reported back to the court.

The judge reported that  MP was in “extremely good spirits”, and had been “smiling and waving” at him throughout their conversation. She had spoken to him in English. Moor J was not convinced that MP knew quite who he was, or what his role was, but appeared to have rather enjoyed the exchange. The judge recounted that MP expressed her wishes to have a caesarean section, to be awake throughout it, and her hope that her child – a boy – would one day grow up to be a policeman. Smiles tugged at the mouths of all those visible on screen.  

Final submissions

At final submissions, two additional issues  arose. 

1. Further hearings

First, whether further court hearings should be arranged to pursue other matters in this case. Counsel for the hospital NHS Trust was anxious that MP’s mental health could remain poor or further deteriorate post-partem, necessitating further court best interests decisions. He therefore submitted that arranging a hearing, for some time in the future, would usefully enable the court to deal with any issues arising in the train of this hearing, rather than requiring a fresh application where factual matters would have to be submitted anew. 

Moor J was not receptive. Stressing with some force that “we are absolutely overwhelmed with work”, the judge declined to list any further hearings to deal with speculative issues, asserting that “this is a self-contained application”. If there was any further need to come to court, he said, an application could be made at that stage and not before. He was “hopeful that MH’s problems will resolve themselves and this court will have no further jurisdiction”.  However, on the suggestion of counsel for the second NHS Trust, Moor J ordered that whilst this was a final hearing, he would ‘grant liberty to come back’  to the court in his final order. This would allow any such issues to be resolved within the structure of the instant hearing, but would avoid listing a hearing unnecessarily.

2. Dealing with delay

Second, counsel for MP via the Official Solicitor raised a concern with “delay in this case”, saying that it ought to have been before the court in November.  The judge made clear his view that delays in such cases were not at all unusual. 

Court guidance concerning applications for court-sanctioned interventions in childbirth has been in place since Mr Justice Keehan’s judgment in NHS Trust & Ors v FG [2014] EWCOP 30, which has an Annex specifying the procedures to be followed, including that applications should be made at the earliest opportunity” and “no later than 4 weeks before the expected date of delivery”.  Keehan J specifies the reasons for this time frame, saying that “this approach is dictated by P’s Article 5, 6 and 8 rights and best interests”.  

Despite this guidance, it’s common for cases to come before the court (as here) where women are within 4 weeks of their expected delivery, and judges regularly express concern that they are having to make decisions about childbirth for women close to (or even after) their due dates.  In GSTT & SLAM v R  [2020] EWCOP 4, Hayden J was making a decision concerning a woman who was 39 weeks and 6 days into her pregnancy.  The judge characterised the delay as “avoidable” and “deprecate[d]” the delay in bringing the case – although in fact it seems it had only become clear 10 days earlier that a problem had arisen because P had stopped taking her anti-psychotic medication.   

In the instant case, Moor J commented on the causes of such delay, noting: “It’s the good nature of clinicians. They believe they’ll be able to sort it out and then at the very last minute they realise they can’t”. 

In response, counsel for the second NHS Trust (Fiona Paterson) wondered whether it would be appropriate for the President or Vice President of the Court of Protection to write to the Royal College of Obstetricians and Gynaecologists (RCOG) about the pattern.  “As counsel we see this more often than we would hope”, she reflected. The judge said he would raise the matter with Mr Justice Hayden, whose office (he said) was within easy walking distance of his own.

In sum, it was clear that there was agreement between counsel that it was in MP’s best interests to receive an elective caesarean, facilitated by a spinal anaesthetic, with administration of general anaesthetic possible if strictly necessary. Moor J was invited to make this order. 

Judgment

The judge summarised the applicable law. Little in that summary would surprise readers of this blog: capacity, which is decision-specific, is assumed unless established otherwise on the balanced of probabilities (see Mental Capacity Act [MCA] 2005, s1(2)). Nobody is to be treated as without capacity unless all practicable steps have been taken to assist them without success (MCA, s1(3)). A person is not to be treated as unable to make a decision merely because he makes an unwise decision (MCA, s1(4)). If lack of capacity is established, the person must be treated in accordance with what is in their best interests (ibid, s1(5)).

Against this background, Moor J was entirely satisfied, based on evidence about MP’s psychiatric state and her inability to understand, retain and weigh the relevant information,  that she lacked capacity to make decisions about the birth. He was similarly satisfied that an elective caesarean, performed under a spinal anaesthetic, was in MP’s best interests, in large part due to the size of the baby and the risk of shoulder dystocia.  The evidence was cited to support this. An elective caesarean under spinal anaesthetic is also what MP wants for herself, and her partner also (now) supports this.  Moor J also ordered that a general anaesthetic may be administered but only if it became ‘strictly necessary’, for example through failure of the spinal anaesthetic, or MP experiencing undue pain or anxiety. 

Reflections

At first sight, this may seem an uneventful hearing. There was no dispute about what was in the person’s best interests, nor was there any divergence between what she herself desired and what was determined to be in her best interests. The hearing ran smoothly and concluded warmly, with Moor J sending MP “the very best for a successful delivery”. 

The hearing was an excellent example of how this non-adversarial court works collaboratively and inquisitorially to arrive at the best possible outcome for MP.

I learned several matters from observing this hearing:

  • The Court of Protection is presently working under great pressure. Even hearings which, like the instant case, concern seriously invasive medical procedures on the bodies of non-capacitous vulnerable persons, are arriving as urgent and late applications.
  • When handling such matters, the court must delicately balance patients’ Article 8 rights to privacy with the public’s Article 10 rights to freedom of expression. Indeed, in the instant case Professor Celia Kitzinger intervened to query whether anonymising the applicant NHS Trusts was appropriate, given the court’s commitment to  transparency, and the possibility that disclosure permits recurrently defaulting NHS Trusts to be identified.  Professor Kitzinger gave as an example the successful application of journalists (Louise Tickle and Brian Farmer) to name Haringey in reporting Family Court proceedings (as reported by The Transparency Project) – while also acknowledging that this is a very different case.  Moor J, observing that the intervention was made “absolutely properly”, agreed that there is “a need for as much transparency as possible”, but upheld anonymisation of the public body in this case in order to absolutely minimise any risk of MP’s ‘jigsaw identification’ (i.e. enabling her identification through publishing a range of different facts about her). It was impressive to observe the courtesy and respect with which this matter was handled, especially in a hearing of such urgency. 
  • Finally, observing the hearing was valuable for my ongoing legal education. Whilst I have studied medical law for some time, this was the first ‘best interests’ hearing I have ever observed. Observing it, and writing this blog with Professor Kitzinger’s assistance, has enriched my understanding of the decision-making process tremendously. What’s more, as an advocate-in-training myself, it is tremendously valuable to observe advocacy of such high-quality. I was struck by the articulacy and care with which all advocates assisted the court. These insights will no doubt uplift my own advocacy style, for which I (and my advocacy tutors!) can only be thankful as Bar exams creep closer.

I am grateful to all participants in the hearing, and to Professor Kitzinger for her support with this blog post, especially as regards the significance of Moor J’s conversation with MP. 

Jordan Briggs is Denise Pannick Scholar at Gray’s Inn currently studying on the Bar Vocational Course at City Law School, London. His previous blogs on legal matters include a brief history of legal aid and a 3-part series on the government’s response to Covid-19 and the rule of law.  Jordan tweets @JordanBr1995

Health and Welfare Attorney applies for urgent hearing on life-sustaining treatment

By Jenny Kitzinger and Celia Kitzinger, 10th December 2021

UPDATE 13th December 2021: At this hearing it was stated – and we reported – that the patient was in a “prolonged disorder of consciousness” . In fact, (blog to follow) it transpired that was NOT the case. She has a brain injury but is NOT in a prolonged disorder of consciousness.

Life-sustaining treatment has been withdrawn from a woman in her late 70s, described as being in a prolonged disorder of consciousness.

The naso-gastric tube that was placed on or about 23rd October 2021, which provided her with nutrition, was removed about four weeks ago.  She is receiving only hydration (with dextrose and saline) via an IV line.

Her son and daughter have opposed withdrawal of the feeding tube from the moment they were told about it.

The case was heard for the first time in the Court of Protection on the urgent hearings list before Mrs Justice Arbuthnot on Thursday 9th December 2021. We understand that the application was filed the day before (on the evening of 8thDecember 2021).  The hearing started shortly after 3.30pm the following day.  This shows the speed and efficiency with which urgent cases can be addressed by the court.

The application was brought by the patient’s son, represented by Katie Gollop QC

The person at the centre of the case (Mrs W) was represented by Conrad Hallin, via the Official Solicitor.  

The Trust (London North West University Healthcare NHS Trust) was represented by Eloise Power.

Due to the urgency with which this case was heard, only the applicant had prepared a written position statement.  Counsel for the Trust said she’d only received her first instruction at 12.45pm, less than three hours before the hearing began.

Facts of the case

Counsel for the applicant summarised what is known of the facts so far. 

The patient’s son and daughter had been asked to agree to the insertion of the naso-gastric tube (on about 23rd October 2021) but had not been consulted about its removal.  They say they’d not been told about the removal of the tube in advance, or asked what their mother would want. 

The son and daughter are people who in the words of the Mental Capacity Act 2005 (s. 4(7)(b)) are ‘engaged in caring for the person or interested in his welfare” and as such their views about what the person would want, and what is in their best interests, must be “taken into account if it is practicable and appropriate to consult them”.  

They say that they were informed on 11th November 2021 that the naso-gastric tube had been removed by the hospital. They informed the Trust that they objected to the removal of the tube and asked that it be reinserted.  They were told that the Trust would obtain a second opinion – but no written opinion has been provided to them.

On 12th November they sent an email to the Trust stating their objections to removal of the naso-gastric tube.  They reminded the Trust that they hold a health and welfare Lasting Power of Attorney and requested a meeting and information.  

They reiterated that concern about the Trust’s decision to withdraw nutrition on 15th November (again in writing) and had a meeting with doctors on 23rd November at which they were told that the tube would not be reinserted and that life-expectancy was a matter of days.

On 25th November they had a second meeting with doctors and were told that other treatments had also been withdrawn and that a DNACPR (Do Not Attempt Cardio-Pulmonary Resuscitation) notice had been in place at least since October 2021.

At a further meeting on 7th December, no agreement was reached about artificial nutrition.  The Trust’s position was that they would not provide it.  Mrs W’s attorneys stated clearly that withholding this treatment was against their mother’s wishes and not in her best interests and that they objected to it – and also that the DNACPR was contrary to their mother’s wishes.

Lasting Power of Attorney

The patient’s son and daughter are not simply  ‘family members’ (or ‘next of kin’). They are her health and welfare attorneys.

Contrary to popular belief, family members and next of kin do not have decision-making rights in relation to an incapacitated person’s medical treatments.  Doctors should consult them, but decision-making responsibility lies with those professionals responsible for delivering treatment, or with overall responsibility for a person’s care.

But in this case, Mrs W had specifically appointed her son and daughter as her joint health and welfare attorneys.  This means they are the people she gave the legal right to make decisions about her health and welfare. They cannot, of course, determine what treatment she is given, but they can consent, or refuse to consent, to what is offered.

The Office of the Public Guardian (OPG) has published a guide to making and registering power of attorney (click here).  It tells people:

An LPA is a legal document that lets you (the ‘donor’) choose trusted people (‘attorneys’) to make financial decisions or health and care decisions on your behalf.”  

It explains that attorneys can only make decisions for you when you don’t have mental capacity and continues:

One very important decision has its own section in a health and care LPA. You can choose whether your attorneys or your doctors should make decisions about accepting or refusing medical treatment to keep you alive, if you can’t make or understand that decision yourself.”

There’s  a whole section dealing with life sustaining treatment in the OPG guide.  Here are three short extracts:

You have two options: 

option A – I give my attorneys authority to give or refuse 

consent to life-sustaining treatment on my behalf 

option B – I do not give my attorneys authority to give or refuse 

consent to life-sustaining treatment on my behalf 

Sign only one option. 

Life-sustaining treatment: definition 

‘Life-sustaining treatment’ means care, surgery, medicine or other help from doctors that’s needed to keep someone alive. 

Life-sustaining treatment can include: 

a serious operation, such as heart bypass surgery 

chemotherapy, radiotherapy or another cancer treatment 

an organ transplant 

artificial nutrition or hydration (food or water given other than by mouth) 

Life-sustaining treatment: instructions (optional) 

You can write instructions in section 7 of the LPA form to specify medical conditions where your attorneys must or must not consent to life-sustaining treatment on your behalf. 

In this case, Mrs W had signed the box to say that she did give her attorneys authority to give or refuse consent to life-sustaining treatment (including clinically assisted nutrition and hydration) and she had written as follows:

I want to live and you must fight to help me live.  As a Christian, my faith is very important to me…”  

The documentation for Mrs W’s Lasting Power of Attorney was before the court. It had been registered with the OPG on 18thJanuary 2020 and nobody raised concerns about its validity.

This means that – up to the point at which the matter came before the court – it was the son and daughter, as the jointly appointed health and welfare attorneys, who were the nominated “decision-makers”.  

It was up to the attorneys to make decisions in Mrs W’s best interests as to whether or not life-sustaining treatments that clinicians are willing to make available to Mrs W are consented to or refused.

The law on withdrawing treatment from PDOC patients

Since the Supreme Court case of An NHS Trust v Y and another [2018] UKSC 46, it is not mandatory to bring cases to court before withdrawing clinically assisted nutrition or hydration from patients in prolonged disorders of consciousness (PDOC), if certain safeguards are followed.

These safeguards include proper compliance with professional guidance and a second opinion from a senior independent clinician.  When it is apparent that there is “a lack of agreement to a proposed course of action from those with an interest in the patient’s welfare, a court application can and should be made”.  

In this case, it appears that no second opinion had been obtained (or at least the family do not know of it).  

The family say that communication with the Trust is extremely difficult. They don’t feel they’re being provided with the information they need or are entitled to. They don’t feel consulted or properly involved in the decision-making process.

They feel strongly that as the Trust knew there was a lack of agreement between the attorneys and the clinicians as to P’s best interests in relation to continuing clinically assisted nutrition, the Trust should have brought the dispute to court.

The applicant’s position (Katie Gollop QC)

Counsel for the son asked the court to “hold the ring” by making an interim declaration that it is lawful and in Mrs W’s best interests for her to be provided with nutrition and hydration and all other medical treatment necessary to life.  The son also wanted the DNACPR removed (again on an interim basis), disclosure of medical  records, and an independent second opinion from an expert.

The Trust’s position (Eloise Power) 

Counsel for the Trust had been instructed to offer “a sincere apology in open court to Mrs W and to her family”.  She apologised first that the views of the family members/attorneys “were not fully elicited prior to removal of the naso-gastric tube” and second “that an application to the Court of Protection was not made”.  

She said that reinsertion of the naso-gastric tube might seem “at first blush” the “obvious” solution – but that reinsertion now “carries some significant risks” (such as aspiration).  She asked for medical evidence to be sought as soon as possible as to the benefits and burdens of naso-gastric feeding “before intervention which could lead to the immediate death of Mrs W”.  

The judge said, “I am most dismayed by the poor communication that there has been between the hospital and Mrs W’s children.  I will in due course need a full explanation of what has gone on in relation to that. I say no more than that now.”  Counsel for the Trust agreed that “this is an aspect of the case that merits full disclosure”.

Finally, she said that clinicians are not willing to perform cardiopulmonary resuscitation on Mrs W “and so this is not a measure for an interim declaration”.  We assume she meant by this that  CPR is not a treatment that would be clinically indicated for Mrs W, because the court cannot order doctors to give treatments that they consider clinically inappropriate.

The Official Solicitor’s position (Conrad Hallin)

Counsel for the OS sounded frustrated at the lack of information available in this case and said “we are largely in the dark as to the circumstances on the ground”.  He raised the question as to Mrs W’s diagnosis and prognosis.  He was concerned that the issue of feeding wasn’t straightforward “as we don’t know how long she may survive without nutrition. We don’t know what the extent of the [risk of] aspiration is if the naso-gastric tube is reinserted.”  

He pointed out that there is a question mark as to whether or not the DNACPR order falls within the remit of the Court of Protection depending on the basis on which it’s imposed – but in any event there is a duty to consult family, following Tracey “and that doesn’t appear to have been done, which is obviously very disappointing”.  He conceded that “it may not be a best interests decision if CPR is not clinically indicated, but I want clarity on that”.  

Moving forward?

Counsel for the applicant said she wanted to say one thing about the past before moving on to consider future actions.  

She said it was “astonishing and deeply troubling that for four weeks until today, a patient in this country in 2021 has been deprived of nutrition without their nearest and dearest being consulted.  This calls for a Serious Untoward Incident investigation…. If Mrs W had died in the last four weeks, the family would have been looking at an inquest with the potential of an investigation for manslaughter. This should never have happened.”

Katie Gollop QC then reported an email from her instructing solicitor which identified a doctor within the Trust who had very recently (presumably in response to this court action?) completed an  assessment of Mrs W and read some of Mrs W’s medical records.  She also reported that an independent expert, Dr Chris Danbury, Consultant in Anaesthetics and Intensive Care could be available next week to provide an independent expert report – but not until Tuesday.  She pointed out that he was eminently qualified to be an expert in this case as he had been a member of the core group that authored the Guidelines on “Clinically Assisted Nutrition and Hydration (CANH) and Adults who lack the capacity to consent” (produced by the British Medical Association and the Royal College of Physicians and endorsed by the General Medical Council).  

The judge suggested a break of 45 minutes (it actually extended to nearly two hours) to discuss the way forward.

On return to court (now close to 6pm), it was reported that Dr Danbury was able to rearrange his appointments and provide the report on Monday morning – on condition he receives all the medical records, including imaging, tomorrow (i.e. Friday).

The Trust, however, had not been sure he was the right expert because “he’s an intensivist. She’s being treated by geriatricians and we would prefer the discipline of expertise to be the same as the treating clinicians”.  On checking her emails during the course of the hearing, however, she returned to this matter “with trepidation” because “none of the experts whose names have been suggested by the Trust are available, so I’m in the unpalatable position of not being able to offer you the name of a geriatrician on a plate”.  

Given that Dr Danbury was seen by the other parties as “an extremely good expert” and was “heartily recommended” by Counsel for the Official Solicitor, the judge approved Dr Danbury as expert without delay.  The plan is that he produces his report by 10am on Monday morning so that the hearing (a directions hearing) can take place on Monday afternoon (listed for “not before 2pm”).

Counsel for the son asked the Trust to take over as applicant “so the family can concentrate on being family” (the Trust was “amenable” to that), and to pay the family’s costs, given the “close to unprecedented circumstances of this case”.   The judge was nodding at this.  

The judge stated, firmly: “I’m afraid they brought it upon themselves by this behaviour.  That’s what happens when communication breaks down. And that’s putting it politely”.

She ended the hearing (just before 6.30pm) by sending her best wishes to the family.

Reflections

There are several questions raised by this case raises that may be clarified on Monday. 

  • The first is the nature of the decision. It was unclear to us, and indeed to the Official Solicitor,  whether the decisions about this patient are ‘best interests’ decisions or whether, quite simply,  treatments such as CANH and CPR are no longer on offer – and so not available as options for the attorneys to consent to or to refuse.
  • The second is the question of the clinical care put into assessing this patient – one issue raised in the hearing was whether reversable causes of her condition had been adequately addressed.
  • The third issue, not yet explored, is the guidelines that would apply for this patient. The Guidance on CANH (of which Dr Danbury was one of the authors) does not cover patients for whom CANH is not clinically indicated, patients expected to die within hours or days, or patients for whom a decision to stop CANH is part of a broader decision about life-sustaining treatment.  The case of Re Y (referenced in court) concerned a sudden-onset brain injury and PDOC in a previously capacitous and healthy patient, and the guidance was largely drawn up in response to that case. For such patients the appropriate guidance is laid out in Part 2, Chapter 5 of the Guidance.   The Guidance offers different recommendations for patients in PDOC with neuro-degenerative conditions (Part 2, Chapter 3) and those who have co-morbidities or frailties likely to shorten life expectancy, along with PDOC following brain injury (Part 2, Chapter 4).  We simply didn’t have medical information about MW’s condition to know which part of the Guidance should be consulted in her case.

Regardless of the answer to the issues outlined above it was clear those in court were very troubled by what seems to  have been very poor communication. There appears to have been a failure to consult with, or even inform, Mrs W’s family, of certain decisions (eg DNACPR for example or CANH withdrawal). The Trust’s offer to make documents about family meetings available and to conduct their own review may bring clarity to this issue. 

Most fundamentally, however, and what is most troubling about this case for both of us, is an apparent disregard for the fact that the patient has a son and daughter who she designated as her health and welfare attorneys. She assigned them authority over consenting or refusing consent to life-sustaining decisions, and backed this up with a statement of preferences (or instruction) on the form appointing them.

If life-sustaining treatments were on offer,  then the decision-makers were the son and daughter,  NOT the clinicians – and it was up to them to make the decision as to whether it was in her best interests to continue with CANH or not.

For us this is a key point.  We are sisters who work in the area of prolonged disorders of consciousness because our sister, Polly Kitzinger, suffered a catastrophic brain injury, following which doctors refused repeatedly over months and years to listen to and take seriously family views of what Polly would have wanted in this situation (see “Doctors wouldn’t let my sister die”).

Following that experience, both of us (Celia and Jenny), our two other sisters, parents, partners and many of our friends have appointed people we trust as our health and welfare attorneys (and we’ve also written Advance Decisions and Advance Statements).  We did this because we wanted to give best interests decision-making authority (on issues not covered by our Advance Decisions) to someone who knows us and whom we trust to represent our wishes. It’s dismaying to consider that medical professionals might simply ignore our health and welfare attorneys.

Drawing up and processing such paperwork takes considerable forethought and effort (and a Lasting Power of Attorney incurs a registration fee). In our family, we felt compelled to do this because we wanted to be sure that what doctors did to Polly could not be done to any of us – where the routines of hospitals, assumptions of clinical teams, and indeed, the way the law operated at the time, meant Polly’s own wishes and values were over-ruled. 

In the case of the woman in this urgent hearing,  it seems clear from the quoted wording on her form that she appointed her children as health and welfare attorneys to try to ensure that her strong religious perspective and ‘pro-life’ views would be taken into account.  Presumably she believes that the children she chose as her attorneys will understand her perspective better than her doctors, and will be able to act in accordance with that.  And yet the role she assigned to them, in a legal document, has apparently been ignored.

There’s a proviso here. It’s possible that clinicians are no longer willing to offer CANH because they consider it clinically counter-indicated. That would mean that it’s not an available treatment to which the attorneys can give consent.   The attorneys cannot  determine what treatments she is given: they can only consent, or refuse to consent, to what is offered.  It was  very unclear in court whether or not CANH was, or is, in fact a clinical option for this patient – and so equally unclear as whether or not a best interests decision by the court was possible now, or whether a best interests decision had been possible previously for the attorneys. Either way, the attorneys should undoubtedly have been consulted and informed about their mother’s treatment.

Decision-making responsibility about Mrs W’s best interests has now passed from her attorneys (who seem to have been prevented from exercising it) to the court.

We will be following the case on Monday 13th December 2021 with interest.

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

Celia Kitzinger is Honorary Professor in the School of Law and Politics at Cardiff University.  She is co-director (with Professor Jenny Kitzinger) of the Coma and Disorders of Consciousness Research Centre and co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project.  She tweets @KitzingerCelia

Photo by Roberto motoi on Unsplash

Approving a conveyancing plan to move P to residential care

By Bridget Penhale, 8th December 2021

The urgent hearing I observed on 12th November 2021 before DJ Geddes (COP 13841478) was the second in this case. 

An account of the first hearing contains useful background information about P’s circumstances and situation – although some of the purported “facts” of that hearing turn out on further enquiry not to be correct.

As stated in the previous blog, the need for an urgent hearing was because the house that P had been living in had been sold at auction and completion of the sale was due the following week (on 18th November). The house needed to be cleared of furniture and effects before then.  Additionally, P needed to vacate the property and live elsewhere.

The applicant local authority was represented by Sophie Allan of Kings Chambers, and her instructing solicitor Laura Mitchell-Ghafoor). Two of P’s siblings had been joined as parties after the previous hearing. 

P was not present, nor did she have any legal representation.  I learnt later from what the judge said that the Official Solicitor (OS) had stated that she would have been available to act on P’s behalf if her costs had been underwritten by the LA.  The judge asked why this had not been pursued. Ms Allan responded that she had been instructed by the LA that in recent years this situation (underwriting of costs) had not been undertaken by them. A factor in this situation could be that on receipt of her share of the estate, P would not be eligible for legal aid, although it was acknowledged that availability of these funds would only happen after P’s move from the property. 

The social worker for P who had undertaken the capacity assessment for P (referred to in the last blog) was also present.

The hearing

The hearing started later than scheduled and although planned for an hour, also finished slightly late as well. I was able to attend all but the last 10 minutes of the hearing.

Due to the delayed start, the Judge indicated that it wasn’t necessary for anyone to summarise the background to the case (so it was very useful to have had this outlined in the previous blog). Instead, she immediately moved to ask what had happened since the last hearing and to talk with P’s siblings, as parties. 

Corrections 

The Judge asked if the siblings had received the court bundle relating to the hearing and this was confirmed. She then said that the siblings had been joined as parties following the previous hearing as they were believed to have been Executors of their mother’s will.  She then added: ‘But that’s not right, is it?[i]

P’s brother replied that there were independent Executors so none of the siblings were acting (or had acted) in this capacity. 

The Judge followed up with a reminder about the matters to be considered in this hearing – that the LA had applied for permission to convey P to a residential care home against P’s wishes.  According to the LA, P was not able to make a decision for herself about where she should live and it was in her best interests to be moved to a care home. 

However, the Judge also stated that the available information had been misleading at the beginning of the case as P had told the social worker in strong terms that she did not agree with the sale of the house (which she thought was illegal) and believed that she had the right to stay there. 

The Judge had not wanted to come to a decision without knowing what P’s view was, even if the language used during her discussion with the social worker was ‘not conventional’

Counsel for the LA was then asked to update the court on what had happened in the past week.

Sophie Allan confirmed that P’s brother and sister(s) were not Executors of the will. 

Further documents received by the LA were from the Land Registry (which confirmed that the house belonged solely to P’s mother), a copy of her Will and a Letter of Administration. 

The Will indicated clearly that P was entitled to a share of the residual estate, together with her siblings – the share to be available following the sale of the house. 

Most importantly, advice had been received from the Chancery about Probate and appeared to say that the effect of the Will was to confirm the residual estate position. It was therefore unlikely that P had any proprietary interest in either the estate or the property.(A proprietary interest refers to the legally enforceable right to possess or use property in accordance with an official recognition of that right.)

The Judge interrupted at this point to ask if it was right to say that there was no evidence that P had any proprietary interest and this was confirmed as extremely unlikely. 

The Judge then asked if P had any beneficial interest in the property. She was told that this also seemed to be very unlikely. 

DJ Geddes then said that it appeared that there was one key issue – whether P had an overriding interest in the property (from having lived in the house for many years): this was not something dealt with in the advice provided to the court.  She asked why P had lived in the property. Was there perhaps any reference to P caring for her parents? There was a question about whether there might be any remedy against the purchasers of the property if there was such an overriding interest,  but given P’s current situation it had not been possible to obtain any relevant evidence of this. In the Judge’s view, it was: ‘unlikely that there is something so significant that it changes the tenor of the advice that had been given’

Best interests

DJ Geddes then turned to the issue of P’s best interests and stated that the only practicable option currently was that of the residential placement for P (which would also involve her removal from the house). 

Counsel for the LA stated that there was some diffidence on the part of the LA, due to the circumstances of the case, but that they needed to know if the court was able to make an order that the conveyancing of P (to a care home) should take place. 

The Judge responded that it seemed that this would appear to be in P’s best interests ‘given the very sad nature of the case’ and that she was working on the basis of documentation that suggested that there was a date of 18th November 2021 for the completion of the sale – but that she wished to ask P’s siblings about this.

P’s brother confirmed that the house had been sold at auction on 21st October, with a completion date of 18th November and that he thought that the completion date timescale might be a fixed period due to the sale by auction. DJ Geddes asked: ‘Is it your understanding that this will be 18th November?’ to which the brother replied that this was what they had been told by the auctioneer.

The brother then explained that he had moved out of the property about 8 weeks previously and that since then his sister (P) had been living alone. 

The Judge asked: ‘Do you have any intention to offer a home to P?’ to which the response was: ‘No – I have a flat and it’s too small anyway’. 

The Judge then asked if P could live alone and it was possible that she could defend a position that she owned beneficially a share in the property. 

The brother replied that there was a risk to P of staying in the house on her own and that during a visit from the care home staff (for assessment purposes) two weeks previously, the staff had said that P was very unsteady on her feet and that they thought that there was a risk to her of using the stairs. He also said that P had been receiving daily support visits from the Intensive Treatment Team (ITT) but that the family had been told that these would stop soon so P would be totally on her own. She was not able to manage her own money to buy food and in any case was not able to cook this. He had been monitoring her bank account on a regular basis and also taking food to her. 

DJ Geddes said that in relation to the fact that P lacked capacity to handle financial matters it was necessary to know if the brother (or any other sibling) had a Lasting Power of Attorney, a Deputyship, an Appointee-ship or any other authority given by a court to manage P’s finances[ii].

The brother stated that he did not have any such authority (and nobody else did) so the Judge asked if P was receiving any benefits, to which the answer was ‘No, she has no source of income at all’.

At this point P’s sister interjected and said that this had been the case since P had given up work (because of anxiety and depression) in May 2019 and that she had been living off her savings, including Premium Bonds, since that time. 

In response to a question from the Judge, the siblings said that P currently had about £1500 left, but that she had always been very reluctant to engage with any health or care services (including Social Security[iii]). She had always wanted to be in control and would not like anyone making decisions for her. She wouldn’t pursue any claim for benefits as she couldn’t go to strange or unknown places and said it was all too much for her to deal with. In the sister’s view, P had been ‘basically flying under the radar – and was now an acutely unwell person popping up from nowhere…

This led to some further discussion about P’s finances and their management; it was confirmed that the Official Solicitor had been sent relevant information (including the fact that P would get her share of the residual estate on completion of probate processes). The LA’s view was that a Deputy should be appointed for P but apparently had doubts about whether or not this should be a Professional Deputy. The Judge was clear that the situation could not stay as it was and that something needed to happen in respect of P’s finances but also said that given the hearing that day, she would need to consider what the family could be given permission to do (and apparently thinking out loud, she said: ‘Perhaps access to a current account for day-to-day spending?’). 

The judge then switched topic back to the matter in hand and stated: ‘On a sheer welfare basis P can’t stay in the house on her own – and couldn’t even if the house had not been sold’.  P’s brother interjected and said: ‘Absolutely, she’s declined greatly in the last few months’ and that there was a big difference between how P had been at the beginning of the year (in January and February) and how she was later (in September and October).

P’s interest in the house – questioning the siblings

A further switch of questioning saw the Judge ask the siblings about whether P had said anything in the past to imply that estate should not be shared (whilst also saying to the siblings that she did not wish to make them feel uncomfortable about this line of questions). The siblings agreed that the issue had not been talked about and said that P had never indicated that she had more right to the property until recently, in relation to having to move out. 

DJ Geddes then queried whether the description of P as a carer to her parents was right and also asked why P had come to be living in the house and what had been the nature of her work.

P’s sister said that P had worked in a part-time job at a local university from 2002-18 and had been living at home whilst working part-time.

The brother then said that he had done most of the caring for his mother following her stroke and that he had done all the shopping, but P had helped ‘a bit’

Their father went into a care home in 2008 and stayed there until his death (no date given) so no care had really been given to him by the children, as his wife had provided this. 

P’s sister then said that earlier on P had lived and worked away for some length of time – she had spent 3 years in one northern town, another year in the north-west, and 7-8 years in a large northern city, before returning home. Since her return she had lived in the family home and contributed to utility bills but had not paid any rent and not helped out financially or contributed for several years, although she did shop for her own personal needs.

The Judge asked how the property had been bought and was told that it had been purchased with a mortgage in 1975, and this had been repaid by 1995 (a 20-year repayment mortgage). She then asked if P had paid for any repairs or renovations to the house (a resounding ‘No’ in response) and the brother reiterated that P had only ever contributed to utility bills.

As an attempt to learn more about the situation, DJ Geddes then questioned whether, if P said that her mother had said she could stay in the property, that is something that could have happened. The siblings said no, this was not possible as none of the siblings had been given preferential treatment by their parents. The brother was asked if he rented or owned his flat (owned) and as a follow-up question to both whether any of the (4) siblings had any substantial amounts of money or if they were of ‘modest means’ to which the sister replied that she was retired but owned her own house – but generally the answer for all was no significant funds. 

The Judge also asked if there was anyone who might have a claim to the house, but then answered her own question by saying that any claim on P’s behalf was theoretical as there was no-one to bring a claim and in any case the house had been sold. So – it was time to come to a decision.

However, there was then a slight diversion into a minor consideration of whether there might be an Inheritance Act claim in relation to P (it was viewed as unlikely) and the Judge said she was thinking that if the sale couldn’t be stopped by an injunction whether there might be such a claim – but it was acknowledged that this could be financially devastating for a (relatively) small estate. Further, it was also recognised that if such an action were successful, P might possibly have access to a larger share of the residual estate, that she might be able to use in future for accommodation (a flat). 

Waiting for the Official Solicitor

Following brief discussion about the appointment of a Deputy, the Judge said that she felt that the key issue was whether a Deputy was needed immediately or could wait for a couple of weeks until the OS became involved. Counsel for the LA agreed that the matter could wait for OS involvement, particularly as the residual estate was not likely to be large with 4 siblings’ interests involved – with recognition from the Judge that P might be the least advantaged of them. The judge also then added: ‘There’s no point in spending money on buying property if P is not able to meet her own needs – so the best might be to have a supported tenancy’.

DJ Geddes then said that she considered it was best to take the least action needed until the OS was on board and that she thought that with the currently available information it would be in P’s best interests for the interim order relating to the current matter of conveyancing P to a care home to be approved. 

Tenancy vs care home?

At this point Ms Allan again expressed some diffidence about the situation and was asked by the Judge what this related to. 

The explanation was that the LA was concerned about the potential impact(s) of the move on P but recognised  that there was no  viable alternative. The LA was apparently amenable to looking at a supported tenancy for P – but clearly this could not be achieved before completion of the sale on 18th November.

The Judge then said that she understood that time would be required in relation to P being absent from the house in order that it could then be cleared prior to the completion date and Counsel for the LA confirmed that this was the case but that this had only been fully known about at short notice and she wondered: ‘If the court was minded to approve P’s conveyance from the house’ – or what might happen if this was not possible. 

DJ Geddes stated that she considered that probably 1-2 days would be needed from Monday (15th Nov) before the house would be ready for the purchasing completion. And whilst she wished to applaud the Chancery Division for thinking about tenancy arrangements, she thought any tenancy would likely be for a set period of 6-12 months and in any case would take some time to arrange. 

Further, was the LA able to say ‘hand on heart’ that a tenancy could be for a prolonged period of time? Ms Allan’s response was that the LA ‘would not put its neck out that far at the moment’ but that in any case, P did not have the assessed capacity to live in a house or on her own at the moment. 

The Judge then replied that she was aware that there would be a need for P to be provided with support, but that this was not likely to be possible from the ITT, so she was not certain that this option was worth exploring at that point.

P’s brother interrupted at this point (perhaps in an attempt to get back to the main issue) to say that the completion date was arranged and a house clearance company was provisionally booked for just prior to that and he was not sure what the consequences of a delay or failure to meet the completion date might be. 

The Judge stated that, although she was not an expert in this area, she thought that there would be serious financial consequences if the date was not complied with as the house had been sold at auction. 

P’s sister then joined the discussion and said that the problem was exacerbated by the fact that the property was a large Victorian house with 5 bedrooms – with hundreds of books, lots of furniture and personal items and that the family had not been able to move anything with P in the house as she would not permit this.

Conclusion

At this the Judge suddenly said: ‘It’s 12.55…’ (nearing the end of the time made available for this hearing) and the key issue was that it was not in P’s best interests to remain in the property at all, so Ms Allan again asked if the conveyance plans, as detailed in the documentation could be approved.

The social worker had made a provisional booking with a specialist company to assist with the move for early the following week; she had indicated that she would be present as someone who P knew (at which point P’s brother said that he would also attend) but there was acknowledgement that it might take more than one attempt to move P out of the house. 

DJ Geddes said that she would not prescribe an earliest date for this to happen, but she did consider that it was in P’s best interests to move and that she should be ‘conveyed to the residential care home in accordance with the conveyance plan that had been drawn up’. It seemed that these plans included provisions to attempt to minimise distress to P, and both a relevant risk assessment and restraint policy had been provided to the court. It was also apparently evident that the intention was to ensure that anything done (to effect the move) was with these provisos in place and that the deprivation of P’s liberty should include the minimum interference with P’s rights and should be ‘…proportionate to achieve P moving out’. 

The Judge said she had read the statements provided by the specialist service and said that she hoped that the service would enable P to comply with the move and that the minimum would be done in order to ensure that the move and conveyance to the care home happened. The decision could not be put off any longer, and although there had only been 1 week since the last hearing, in view of the circumstances it was not possible to allow any more time – and the judgment that would be handed down would say this.

D J Geddes then moved to rehearse the terms of the judgment, with some discussion with Ms Allan about some minor changes to the draft order that had been drawn up before the hearing. The Judge said that the final order made would indicate that the LA should ‘implement conveyance as soon as possible – and no later than the end of the day on 15thNovemberh’. In any case conveyance was authorised to take place within 7 days as an urgent authorisation. She also wished to determine directions for another hearing to be held before her in a couple of weeks and a date of 10th December 2021 was discussed. 

Before the next hearing, DJ Geddes asked for a statement from the social worker about what had happened and how P was managing in the care home, together with any additional information from the LA about future plans. 

The aim of the hearing on 10th December would also be to explore possible treatment and other options. It was hoped that the OS would be able to join the hearing and provide some information about P’s wishes and feelings.

At this point another discussion commenced with the siblings about whether they should remain as parties to the hearing and how they might wish to proceed with this (could just one of the siblings attend?). 

Unfortunately, at this point I had to leave the hearing for another appointment, so did not hear the outcome of this discussion, or indeed of the hearing.

Reflections

After a lot of to-ing and fro-ing in terms of discussion of points – some that appeared more-or-less relevant to the issue at hand (given that I did not have sight of any documents) – the Judge appeared to make the final decision relatively quickly. Although the outcome was actually never really in doubt, it seemed that suddenly, just like that, P was to be removed from her home and placed elsewhere within a couple of days.

As a non-legal professional,  it seemed to me that during the hearing the Judge was ‘thinking out loud’ for periods of time and that although her views did not appear to alter significantly, there was an element of rehearsal (and response) to various arguments – and possibly to any challenges that might be made to the decision that was being taken. Clearly the Judge would not want to be viewed as rushing such a significant decision and indeed some of the information that transpired (for example: P had not lived in the house on a continual basis and had lived away for quite a long period of time when younger; she had not cared for her parent(s) and had also worked successfully for a substantial amount of time; she had not paid rent or contributed to the upkeep of the property) was very useful to help to fill in some detail about P’s background and to help develop some sense of her as a person.  

Nonetheless, the absence of P from the hearing was rather troubling. And although there was some reference to provision of both care and support to P, there seemed to be a lack of clarity in relation to this – perhaps because she did not appear to have received a full assessment of her needs, particularly in relation to her mental health. In addition, unlike in other hearings I have attended, the Judge had not been able to meet or have a discussion with P, so this tended to add to a sense of incompleteness, although her inclusion of P’s siblings and their views throughout the hearing was respectful and sensitively achieved. 

I think that the troubling/troublesome element was exacerbated for me by the apparent de-personalisation or even objectification of P that seemed to happen during the course of the hearing. Consistent use of the terms ‘conveyance’ and ‘conveyancing’ seemed to mask the fact that P was to be forcibly removed from the house – the place that had been her family home and where she had lived on a continuous basis for almost 20 years – and that she was to be placed, apparently wholly against her wishes, in an institutional setting, albeit a care home rather than a hospital. At several points I wondered why ‘removal’ was not being used, and questioned whether this might in part be due to some need to objectify and distance/other the situation in order to make it more palatable – or even to diminish the human side of the circumstances.  

And although this was a court of law, I was struck by the absence of any mention of the possible effect(s) of this move and this loss on P. Whilst it was clear from evidence heard that P’s ability to care for herself and to live autonomously was at that point really quite restricted and that this was indeed an urgent situation in which a decision and definitive action was needed, I was left quite uncomfortable with aspects of the hearing. 

In addition, from professional experience as an Approved Social Worker within the remit of the Mental Health Act 1983[iv], I very much doubted that P would comply with being removed from her home – or with being deemed to lack capacity to make the decision about where to live for herself.

I await the next hearing, and seeing the part played by the Official Solicitor in representing P’s best interests.  

Bridget Penhale is Reader Emerita in Mental Health of Older People.  She tweets as @bpenhale


[i] All quotations are as accurate as possible but as we are not allowed to record hearings, they are unlikely to be verbatim.

[ii] The Judge outlined what these were for the siblings. Appointee-ship refers to an authority in relation to Social Security Benefits on behalf of a claimant

[iii] Now Department for Work and Pensions (DWP)

[iv] Approved Social Workers, or ASWS were the precursors to Approved Mental Health Professionals – AMHPs – and involved in assessment of individuals under the auspices of the Mental Health Act.

Photo by Delila Ziebart on Unsplash

Naming a putative ‘expert’ in a COVID vaccination case: A letter to the judge

Celia Kitzinger and Claire Martin, 6th December 2021

Editorial Note: We have now published another blog about this hearing which describes the process by which the court arrived at the decision that COVID vaccination was in P’s best interests: The politics of the pandemic in the Court of Protection

We chose to observe the hearing before Deputy Circuit Judge Rogers (COP 13816452, held remotely in Nottingham Family Court on 29th November 2021) because it was listed in CourtServe as dealing with the issue of “COVID vaccination”. We didn’t expect what happened next.

We’ve covered several hearings concerned with vaccination against coronavirus (COVID 19) as part of the Open Justice Court of Protection Project (e.g. “COVID vaccination in the Court of Protection; Why COVID vaccination is NOT in this care home resident’s best interests; COVID vaccination contrary to parent’s wishes; A COVID vaccination hearing. ). In each case there was a question (or dispute) as to whether or not vaccination was in P’s best interests and in each case the judge weighed up the risks of vaccination (e.g. known side-effects, restraint and acting counter to P’s wishes) with the benefits of vaccination (e.g. protection against potential illness and possible death). In cases where expert witnesses were asked to give evidence, this was in accordance with Court of Protection Rules Part 15 which lays out the rules for expert evidence.

At the outset of this hearing it became clear that evidence had been put before the court that didn’t comply with these rules – and also that a court order had been breached. A member of P’s family, his sister, had sent the court bundle to a retired GP (not involved in the treatment of P) who had read it and (at her request) written an email giving his opinion about the case, with permission to include it in documents before the court. This she had done.

So the hearing opened with a discussion as to whether or not this evidence was admissible.

It breached the court rules in a number of ways, most obviously in that permission is required to instruct an expert in the Court of Protection (Court of Protection Rules 15.2 and 15.5). No such permission had been sought.

Additionally, any application for permission to instruct an expert must comply with Rule 15.5 which includes providing the expert’s CV and a draft letter of instruction. The court will then decide whether the expert’s view is “necessary to assist the court to resolve the issues in the proceedings” (Rule 15.3).

The letter of instruction (i.e. what the sister had asked the retired GP to do) was not disclosed. His CV was subsequently provided at the request of the Official Solicitor, and discloses that he is a director of the UK Medical Freedom Alliance. That organisation states that is is “an alliance of UK medical professionals, scientists and lawyers who are campaigning for Medical Freedom, Informed Consent and Bodily Autonomy to be preserved and protected“. The organisation disagrees with the government’s approach to the pandemic and appears to endorse herd immunity rather than mass testing and vaccination. The retired GP made no mention of this affiliation (said the Official Solicitor) in the email in which he gave his opinion about P.

Counsel for the Official Solicitor drew attention to material posted online by the retired GP in which he asserts that COVID-19 is no different to flu; that children cannot transmit the virus; that masks are of “very limited value if any” and that it is not a “good thing to do” to have a vaccine unless you are very elderly or vulnerable. Nor, she said, did he have any particular expertise in relation to COVID-19, epidemiology, immunology or vaccination.

According to the Official Solicitor, the court did not need expert evidence to determine this application. (Evidence from those involved in caring for P had already been received and would be provided in oral evidence in court.) She added: “If any expert evidence was necessary, it would not be appropriate to obtain it from a retired GP with a particular personal view about the pandemic which he did not disclose when setting out his opinion“.

The sister’s counsel chose not to make an application to admit the evidence. “So,” said the judge, “would you agree with me that I now put it out of my mind and it is – not physically because it’s an electronic bundle – but it’s now removed from the bundle“. Counsel concurred.

The judge then formally declared the evidence inadmissible. He also declined to give retrospective permission to the sister to disclose court documents to the GP, ruled that the confidentiality of the court had been breached, and ordered that the GP should destroy the documents he’d been sent.

Transparency

So far in this blog we’ve not revealed the name of the retired GP who provided the inadmissible evidence.

That’s because in initially opening the case, and discussing the information to be covered by the transparency order (the reporting restrictions injunction), counsel for the local authority had said that – in addition to not naming P himself, his family members, the names of care home staff and treating clinicians (all standard prohibitions) – observers must not publicly disclose the name of this putative expert.

We wanted to challenge this prohibition on naming the retired GP whose email had been sent to the court. So when the court broke for lunch we hastily discussed our reasons and wrote a letter to the judge, sending it via one of the counsel whose email address we knew and asking for it to be forwarded.

The arguments we raised were successful, and the judge has permitted us to identify him. He’s Dr Jon Rogers (but as the judge was at pains to point out, not related to him, despite the same surname).

We thought it would be helpful to share the letter we wrote, to support others who might also want to contribute to transparency in the Court of Protection. Here it is.


29th November 2021

Dear Judge 

Application to name Dr Jon Rogers in publicly reporting COP 13816452

We write as two of the core members of the Open Justice Court of Protection Project to make the case that Dr Jon Rogers should be publicly named in our reporting of this case as a matter of public interest.  

Our key reason is: 

  1. The Transparency Order is designed to protect the privacy of the protected party (P) at the centre of the case.  There is nothing to suggest that naming Dr Rogers will cause P, or his family, to be publicly identified.

Additionally:

2. The matter of “expert witnesses” before the court is one that is clearly of public concern.  We have covered this in the Court of Protection previously (e.g. Faith, Science and the objectivity of expert evidence and When Expert Evidence Fails).  It is important for members of the public to be informed about the methods whereby expert witnesses are appointed to give evidence to the court, the difference between opinion evidence and factual evidence, and issues relating to the granting of permission retrospectively.  This is obviously easier to communicate if we can name the person whose opinion was judged, in this case, to be inadmissible.

3. Dr Jon Rogers is a public figure, who has made his own views on covid vaccination, and on public health measures during the crisis, abundantly clear on public forums, including notably as director of the UK Medical Freedom Alliance.  Videos posted by Dr Rogers online include assertions that masks are ineffective and that it is not “a good thing to do” to have a vaccine unless you are very elderly or vulnerable.  He has also made a video of himself endorsing a “Free the Face” march (protesting against the wearing of face coverings) (https://www.bristol247.com/news-and-features/features/to-live-years-under-this-strange-paranoid-dystopia-is-crazy/). In sum, he is a public figure who has made his own opinions very public and should properly be held accountable for them.  We believe that the balance between Dr Rogers’ right to privacy and our right to freedom of information undoubtedly falls squarely on the right to freedom of information in this instance.

4. It was stated in public court by counsel for the Official Solicitor during the course of cross-examination of P’s sister, that she (the sister) had contacted the UK Medical Freedom Alliance and shown Dr Rogers a draft of her witness statement and obtained his comments on it before filing it with the court.  (This was accepted as factually accurate by P’s sister.)  We expect to be able to report this part of the hearing, held in open court, in accordance with our Article 10 rights and do not see any counter-balancing Article 8 rights from either Dr Rogers (for reasons earlier stated) or from P’s sister (whose name and address we understand are covered by the transparency order).  

For all these reasons, we believe that the transparency order should not be extended to cover the name and identity of Dr Jon Rogers, and that the public has a right to know of his involvement in this case.

Thank you for considering this matter.

Yours sincerely

Celia Kitzinger and Claire Martin

Open Justice Court of Protection Project


What happened after we sent the letter to the judge?

After dealing with the substantive business of the hearing (was it in P’s best interests to be vaccinated against COVID?) and making a judgment on that (yes), the judge turned to the matter of whether or not the retired GP’s identity should be protected by the transparency order.

The judge hadn’t had time to read our letter, so asked us to make an oral submission. Celia spent about 10 minutes talking through the arguments we had made. (Yes, making submissions in court when you’re not a lawyer is a scary thing to do – but at least I had a ‘script’ in front of me!).

The judge then asked for submissions from the lawyers in court.

Counsel for the CCG said he was “neutral” on the matter. He agreed with our submission that as there was “no connection between Dr Rogers and P from a caring or other perspective there’s no obvious logic to preventing his identification in terms of protecting P’s identity“.

Similarly, counsel for the Official Solicitor, despite having no instructions on the matter, said that naming Dr Rogers was “of no relevance for protecting P“.

Counsel representing the sister (who had disclosed documents to Dr Rogers and asked for his input) took a different view, however. He accepted that naming Dr Rogers did not risk P being identified but said that Dr Rogers “has not contributed to this case“. There had been no application to join him as an expert, and so nothing we might write would have a bearing on “how experts are selected or appointed or even approached in relation to COP work”. He stated that “the genesis of Dr Rogers’ email was entirely innocent and sought by [the sister] for her own purposes“, and he could see “no good reason why Dr Rogers needs to be in any way associated with this case”. His view was that being able to name Dr Rogers would not add to the reporting of the decision. He also pointed out that since Dr Rogers was not in court, he had no opportunity to respond.

The judge ruled that “strictly speaking Dr Rogers has played no real role in this case” but that to characterise the situation in this way “flies in the face of reality“. He said that there had been:

“... a step taken by [P’s sister] which I regret. I could say I deprecate, but that may be going too far. There is value in drawing attention to the fact that information from professionals unconnected to the case should not be leaked into hearings. There is value in understanding why procedural rules for appointing experts are in place. The application is to make it possible for him to be named, or rather not subjected to any degree of anonymity, so that public discussion of public cases such as this are enhanced. Instinctively I am entirely in favour of that. The President is very keen on transparency. It is important that procedures in the Court of Protection are understood. I’m satisfied there’s a public interest here – particularly in a case where the procedure has gone wrong. And Dr Rogers is a person in the public domain already, with public views on these matters. I have to balance this public interest against the risk of P being identified. I’m satisfied that naming Dr Rogers will not undermine the confidentiality of P or of family members. I am overwhelmingly in favour of granting the application here.

In our forthcoming blog post we will describe the substantive business of the hearing and the process whereby it was decided that covid vaccination was in P’s best interests.

In response to the point raised by counsel for P’s sister (right to respond), we also contacted Dr Rogers, described what had been said in court, explained that we would be writing about the hearing, and offered him the opportunity to respond. All that is for the next post.

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

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

Footnote: All quotations are as accurate as we can make them, and are based on notes typed at the time: we do not have shorthand and they are unlikely to be verbatim. There was also a proposal to prohibit reporting of the name of the CCG, on the grounds that it has a “relatively limited role” in P’s care. Celia also spoke in court to challenge this and the judge ruled that “I see no reason why anonymity ought to be extended to that public body”. Finally, in addition to the CCG, P (via the OS) and P’s sister, P’s father was also a party to this case. He played a “low key” role in the proceedings, but supported vaccination for P, and did not oppose our applications for transparency.

The image is a still from a video post by Dr Jon Rogers on his (public) Facebook page and shows him “live – at Parliament Square” in London on 26th June 2021. Protesters threw tennis balls at Parliament and Downing Street to demonstrate against the continuation of covid restrictions, some of the balls bearing protest messages.

How long can you keep trying to rebut the presumption of capacity?

By Celia Kitzinger, 3rd December 2021

It’s a fundamental principle of the Mental Capacity Act 2005 that “A person must be assumed to have capacity unless it is established that he lacks capacity” (1(2))

Likewise, “A person is not to be treated as unable to make a decision merely because he makes an unwise decision” (1(4)).

The person at the centre of this case, HC, wants to make the (according to others) “unwise decision” to live at home, instead of in the care home where she is currently deprived of her liberty. 

The case (COP 13738484) is a s21A challenge to the standard authorisation granted by the local authority[1].  These s21A challenges are among the most common hearings in the Court of Protection and we’ve published lots of blog posts about them (for example this post, which also provides a detailed explanation of the law in relation to deprivation of liberty and s.21A challenges). 

This application challenges both the capacity requirement and the best interests requirement – but the issue for this hearing before District Judge Searl (via telephone from Newcastle on 22nd November 2021) was only about capacity. 

Opening the hearing

In my experience, judges presiding over telephone hearings in regional courts are responsible for joining all the participants to the conference call for the hearing. This means first-time observers can be quite startled to pick up the phone and be told “It’s Judge X here”. I’m familiar with this procedure and was undaunted when the judge phoned me about 8 minutes before the listed time for the hearing to begin (2.00 pm). Instead of immediately joining others to the hearing, however, she raised a “slight concern” about my presence as observer. She checked that I’d been sent the position statements so that I could follow the case and also that was okay to introduce me without my title (“Professor”) – I think with the intention of making me sound less intimidating to HC who, she said, would also be attending the hearing.  I appreciated her concerns.

The judge then joined the other participants to the conference call one by one, starting with the applicant, counsel for HC, Megan Crowther of Parklane Plowden.  She checked with Megan Crowther that HC had been made aware that there would be an observer today. This was confirmed and seemed unproblematic.  

The other people joined to the call were HC and her Relevant Person’s Representative (RPR), counsel for the respondent local authority, Richard Borrett of Kings Chambers, and the two instructing solicitors (whose names I didn’t capture).

The hearing actually began at nearly 2.10 – and although it was listed for an hour, it continued until 15.23 – an extension facilitated by the subsequent hearing before DJ Searl having been vacated.

The judge explained that she’d not previously heard this case. It had been before another judge, District Judge Malik, but had come before her now as a consequence of an urgent application from the Official Solicitor to hear the case before the next listed hearing with DJ Malik, which had been scheduled for 9th February 2022.

The urgent issue before the court, said the judge, is “to put it bluntly, whether the presumption of capacity stands, or whether – as the local authority seeks – there should be instruction of a further expert[2].

HC and her decision-making capacity

HC did not speak during the hearing (and since it was a telephone hearing, I didn’t see her either).  I learnt that she’s in her early 40s and deprived of her liberty in a care home. 

HC has been living at the care home since 31st December 2020, when she was discharged there from hospital. 

She wants to go home.

The basis for continuing to deprive her of her liberty, and keeping her in the care home against her wishes, has been that there is reason to believe that she lacks capacity to make a decision for herself about where to live and receive care (based on a report from a treating clinician back in January 2021) and that being cared for in the care home is in her best interests.

Now, however, there are three reports from an expert which say that HC does have capacity to make her own decisions about residence and care.

Her s.21A application was submitted at the beginning of April 2021 and the court ordered expert evidence as to HC’s capacity from a jointly-instructed expert, Dr Laurence Mynors-Wallis, a consultant general adult psychiatrist. 

All three of his reports (submitted in June, September and October this year) conclude that HC has the capacity to make decisions about her care and residence.

But, said Richard Borrett, “The local authority doesn’t accept that.  The local authority’s position is that’s not correct.”

The local authority’s position

Although all three expert reports found that HC has capacity to make her own decisions about care and residence, counsel for the local authority pointed to “inconsistencies” between them which, he said, undermine this conclusion. 

In his first report (in June), the expert concluded that HC had capacity in relation to litigation, residence and care.  He had not seen HC’s medical or care records, and conducted an Addenbrookes Cognitive Examination on which HC scored 91/100, suggesting that “HC doesn’t have significant cognitive impairment”.  He took it that HC did not have an impairment or disturbance in the functioning of mind or brain, and was satisfied that she could understand, retain, weigh and communicate in relation to all three areas.

The expert’s second report (in September) was filed after examining HC’s medical records, at which point he accepted that she does have “an impairment of, or a disturbance in the functioning of, the mind or brain” (s. 2(1) Mental Capacity Act [MCA] 2005). She has Alcohol Dependence Syndrome, which – along with some falls – has led to some cognitive deficits and has also been diagnosed with Emotionally Unstable Personality Disorder (see the blog post by Keir Harding for a discussion of the contested nature of this diagnosis).   This means, says counsel for the local authority, that HC “does meet the criteria for the first (diagnostic) stage of the MCA 2005”. But the expert opinion remained that, despite these diagnoses, she retains decision-making capacity in all the relevant areas.

In October, the expert produced a third report based on another interview with HC.  Again accepting that HC meets the “diagnostic” criteria, he found that she lacked capacity to conduct litigation “because she would find it difficult to weigh up the information in an emotionally charged (from her perspective) hearing”.  But he found that, despite underestimating the difficulties she has in managing independently, she has capacity in relation to care and residence.

Counsel for the local authority pointed to “a distinction between these reports from someone who has assessed her on a few occasions and the assessments of those treating HC over long periods of times”.  He added, diplomatically, that “this is not a criticism”, since “it can be more difficult to conduct these assessments over a comparatively short period”.  He then quoted from the treating team, including a consultant clinical neuropsychologist, an occupational therapist and a psychiatric nurse.  The latter states that “She has an acquired brain injury related to falls/alcohol misuse which has impaired her cognitively and capacity to make decisions about her care and accommodation”.

He argued that the expert underestimated the extent of HC’s impairment and that the things she is quoted as saying in his own reports undermine his conclusions.  

For example, in the expert report, HC is quoted as saying that there are no disadvantages to being in her own home, and no advantages to remaining in the care home.  This (he says) undermines the expert’s conclusion that HC can weigh up the advantages and disadvantages of different places to live.

Another example: the expert report says HC “underestimates” her care needs, but quotes her as saying “I don’t need looking after. I don’t need to be kept safe”.  This is not (he says) evidence that she “underestimates” her needs – rather it displays that she simply does not accept that she needs assistance at all.  In most cases (he says) that would lead to a conclusion that she lacks capacity.  It would be different, if HC were saying ‘I recognise I might struggle without support, but I want to go home.

Furthermore (he says) it’s illogical to reach the conclusion that HC lacks litigation capacity because she would find it difficult to weigh up information in the emotionally charged context of a court hearing when making decisions about care and residence is also a highly emotionally charged matter for HC.

In sum, there remains a significant dispute as to HC’s capacity, despite the instruction of a joint expert.  

The local authority did not ask the judge to make a decision today as to whether or not HC has capacity in the relevant domains, but to appoint another expert – ideally the treating clinician (who has already written a few weeks earlier, in a document before the court, that HC lacks capacity to make decisions about care and residence) or – if the judge was not with him on that – then one of two other identified named experts. All three, he said, would be able to report back in time for the January hearing.

The judge asked counsel:

While I appreciate the position of the local authority, it seems to me I could take the self-same points you’ve identified and approach them as falling within the scope of making unwise decisions.”

The judge referred to counsel’s point that HC said she would accept “anything if they let me go home”.  To the local authority, that indicates “she is saying the ‘right thing’” rather than showing “a genuine understanding of her needs” and an ability to understand and weigh information.  To the judge, “I could interpret this as a tactical decision to achieve an outcome”.  

The judge reminded counsel that she had to start with a presumption of capacity and that a decision “may be manifestly unwise and be very far from what we would accept in our own decision-making” without being incapacitous. 

Counsel for the local authority urged the judge not to accept the conclusions of the expert report:

It doesn’t mean as soon as an expert makes a statement of capacity that’s the end of the matter. It can still be a live issue.  Our submission is that the issue of capacity isn’t sufficiently fleshed out to say whether or not the presumption of capacity is rebutted”. 

He pointed again to the evidence from the treating team: that HC has “significant deficits”, that her “autobiographical recall is significantly impaired”, that there has been “deterioration in global intellectual functioning and executive functioning”.  He was surprised, he said, not to see in Dr Mynors-Wallis’ expert report an analysis of the “mismatch” between the reports from the treating team, and his own assessments.

Since (said counsel) the issue between the parties as to whether or not HC has capacity to make her own decision about where to live is not resolved by the expert report, “the way forward has to be another report”.  He cited the case of Bulic v Harwoods and others [2012] EWCH 3657 [QB] to support his claim that a party may, in appropriate circumstances, be given permission to rely on its own expert, after the instruction of a joint expert. (That’s not a Court of Protection case – it’s a dispute about the cause of engine failure in Mr Bulic’s Jaguar vehicle.)

In terms of who might be asked to produce that report, he acknowledged that, in the view of the Official Solicitor, “the treating clinician is too close, and so it would be inappropriate”. 

Yes”, said the judge, “you have a difficult hill to climb to convince me otherwise.  The Official Solicitor’s position on that is my position”. 

The Official Solicitor’s position

Speaking for HC via the Official Solicitor, Megan Crowther addressed the judge: 

We invite you to conclude matters today.  There is an expert report from a joint expert who has considered the matter of HC’s capacity at length, has met her twice over a four-month period, and has produced extensive medical reports. The reports do not differ in their conclusions that HC has capacity to make decisions about care and residence.  At the time of the first report, he had not seen the medical notes and he says there is “insufficient evidence” that the diagnostic test is met – but, in any case, there was also no evidence of her inability to make the relevant decisions. In the second report he quite candidly says this is a complicated diagnosis and he would like to do another functional test.  After another functional assessment, in the final report, he still formed the conclusion that the presumption of capacity is not rebutted. This begs the question as to what can really come from yet another capacity assessment.  There needs to be a line drawn at some point.  HC’s capacity was put in question, and despite that he still says she has capacity for this decision.  The report doesn’t say it’s clear cut.  He says there are some problems with insight, that she under-estimates her difficulties  and downplays her past difficulties with alcohol.  But these are not so extreme that she’s unable to understand, retain and weigh up the relevant information.  The presumption of capacity must prevail in these circumstances.  The parties have a disagreement, but the process required now is not for evidence upon evidence upon evidence to be obtained until one party agrees with the other.  Sometimes that just doesn’t happen.  It’s a  matter for the court. The court decides.”

Counsel addressed some of the concerns raised by the local authority, pointing out that “many concerns are quite out of date” and that the documentation referred to was in any case already considered by the expert in coming to his view. There is nothing in the submissions from the local authority that is “new or surprising that the independent expert hasn’t considered already”.

Requiring HC to undergo a new capacity assessment by a different expert is not a proportionate use of funds or time, given that an independent opinion has been obtained and is well reasoned.  

There comes a time when, though the parties are not in agreement, the court must make a decision.  That is where we are today.” 

Judgment

District Judge Searl summarised the issue before the court and the chronology of events.  She said that, having read all three reports, and the evidence of the treating clinician in the hearing bundle updated over the weekend, her view was that challenges from the local authority “have to be read against the conclusions of Dr Mynors-Wallis being based firmly in the presumption of capacity”.  This is, she said, “the correct approach within the Act”. 

The judge said that when producing his first report, “Dr Mynors-Wallis did not have evidence of a diagnosis, or of lack of capacity… and while it’s correct to say he revised his position, that was on the basis of evidence placed before him rebutting the presumption of capacity”. 

Concluding that the revision of his views was “evidence-based”, District Judge Searl said:

The court can be satisfied Dr Mynors-Wallis has properly considered HC’s neuropsychological assessment, the diagnosis of Emotionally Unstable Personality Disorder and the medical records detailing the hospital stay.  And on that basis, he revised his opinion and undertook further functional assessment.  On the basis of the full records available to him he came to the conclusion, on balance, that while HC underestimates her needs, this does not equate to a lack of capacity.”

The judge did not accede to the request to appoint another expert and reminded herself of the ‘overriding objective to deal justly and proportionately” with this case “allocating to a matter the appropriate share of the court’s resources”. 

She concluded: “I accept that HC has capacity to make decisions about care and residence and accordingly my jurisdiction in this matter ends.”

Comment

In the vast majority of hearings I’ve observed, there is no disagreement between the parties that P lacks capacity to make the relevant decisions. Where there is such disagreement, an expert report usually resolves the matter. 

Sometimes an expert report is deemed inadequate and a new expert is appointed, as here: When Expert Evidence Fails.  But in that case the expert was first invited to give oral evidence in court, and was cross examined, before the opinion of a new expert was sought. 

I’m not sure why the local authority in this case was arguing for further expert evidence from a new expert, rather than for a contested hearing at a future date, at which the existing expert would have the opportunity to give evidence and be available for cross-questioning to have that evidence tested – along with evidence from members of the treating team.  

In the case of Re PH [2011] EWCOP 1704, which also concerned an application under s.21A as to whether a person had capacity to decide where to reside and receive care, the case was transferred by the District Judge to the Royal Courts of Justice to be heard by a High Court Judge. 

Mr Justice Baker made an interim declaration that PH lacked the relevant capacity and gave permission to the parties to instruct an independent psychiatrist. That psychiatrist, Dr Hugh Rickards, reported that PH did have capacity to make decisions about residence and care.

In his judgment, Baker J says:

As this was contrary to the view held by the medical professionals responsible for treating PH, it became clear that a contested hearing as to capacity would be required.”

There was then a 2-day hearing during which the judge heard from the expert witness (Dr Rickards) who had reported that PH did have the relevant capacity, and also from the treating team (anonymised as Drs, A, B, and C, and the allocated social worker, D) who did not believe that the expert report was correct.  (PH’s partner also gave evidence, saying that he did have capacity to decide to return home.)

Baker J concluded:

Having considered the evidence of these witnesses and the other relevant documents drawn to my attention in the papers, I am in no doubt that PH lacks the capacity to make decisions concerning his future residence and care. (para. 1)

I acknowledge the expertise of Dr Rickards and find his approach to his assessment to have been appropriately objective and professional but I was struck by the fact that his report, and the answers to the supplementary questions posed by the other parties, seemed somewhat superficial. This may have been a reflection of the fact that he was basing his opinion on a single interview of ninety minutes. It would be an over­simplification to describe it as a snapshot but it is, to my mind, a disadvantage that the assessment was based on a single visit. (para. 2)

Although neither Dr A nor Dr B nor Dr C has a curriculum vitae as academically distinguished as Dr Rickards, in my view they each have obvious and valuable expertise in HD. Interestingly, each of them brings a slightly different type of expertise to the case – Dr A as a consultant psychiatrist specialising in old age and dementia, Dr. B as a GP but with a unique depth of expertise in HD through his years working at Y Court, and Dr C, with his expertise in mental capacity assessment and interest in medico-legal matters. With respect to Dr Rickards, I consider that the overall expertise of Doctors A, B and C, coupled with their much greater experience of PH as a patient, justifies the court attaching greater weight to their combined views in this case. In addition, D, although not as experienced as the clinicians, was to my mind a manifestly fair and perceptive witness whose opinion demands very great respect. (para. 58)

This judgment underscores the point that the view of an expert witness is not final.  It is, as both parties acknowledged in the case of HC, up to the judge to make the final determination as to whether or not a person has capacity.

In assessing the question of capacity:

.. clearly, the opinion of an independently-instructed expert will be likely to be of very considerable importance, but in many cases the evidence of other clinicians and professionals who have experience of treating and working with P will be just as important and in some cases more important. ” (para. 16 (xiii))

But in the case I’m reporting on here, the judge relied only on the documentation before the court, and did not have the opportunity to hear oral evidence from the expert witness, or from the professionals involved in caring for HC, or to have everyone’s evidence tested in court.  

I don’t know if the outcome would have been different if the expert and treating team had been asked to give evidence in court, but I would have felt that the judgment was based on firmer foundations.

On the other hand, I bear in mind what DJ Searl said about the need to deal “proportionately” with this case,  “allocating to a matter the appropriate share of the court’s resources”. 

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


[1] I have not received a written transparency order but was told verbally by the judge that one existed, or would exist, and (in response to my specific enquiry) that I could not name the local authority because it would risk identifying HC’s  location.

[2] We are not permitted to audio-record court hearings.  Quotations are as accurate as I can make them based on notes taken at the time, but are unlikely to be verbatim.

The most complex Covid patient in the world: Planning for a re-hearing after a successful appeal

By Celia Kitzinger, 30th November 2021

This hearing before Mrs Justice Theis on Monday 29th November was to sort out what needed to be put in place for re-hearing the case of AH, “the most complex Covid patient in the world”. 

The full and final re-hearing is listed for 7th and 8th December 2021 (starting “not before 11am on the 7th) before Mrs Justice Theis.  We will publish details about how to access the hearing once it has been listed on the RCJ listings, (i.e. on the evening of  6th December 2021), but it is likely to be held via MS Teams and be accessed in the usual way via an email to the Royal Courts of Justice court staff. 

Background

A 56-year-old woman, AH, has been an inpatient at Addenbrooke’s Hospital, Cambridge, since the end of December 2020, where she was admitted, on an emergency basis, suffering with severe symptoms of Covid-19. She no longer has Covid-19 but the virus has left her with extensive and serious brain damage.

Dr Chris Danbury, a Consultant Intensive Care Physician instructed by the Official Solicitor, reported back in July 2021 that she has cerebral encephalopathy, brainstem encephalopathy,  motor neuronopathy affecting the anterior horn cells or axonal degeneration and necrotising myopathy.  She was said to be in a minimally conscious state.

After a hearing before Mr Justice Hayden (blogged here), the judge ruled that continued ventilatory support was not in AH’s best interests (Cambridge University Hospitals NHS Foundation Trust v AH & Ors (Serious Medical Treatment) [2021] EWCOP 51).  

The judge said: 

I do not consider that AH’s best interests are presently met by ventilatory treatment in the ICU; ventilation is now both burdensome and medically futile; it is protracting avoidable physical and emotional pain.”

He allowed time for family members outside the UK to travel to be with AH and ruled: “I make it clear that ventilation should be discontinued by the end of October 2021

In fact, ventilation was not discontinued, because the family launched an appeal and the order was stayed pending the outcome of that appeal.

The appeal (blogged here) was successful, and reported widely in the media (e.g. “Relatives of ‘most complicated’ Covid patient await life or death appeal ruling”, “Family of woman with Covid allowed to appeal against end-of-life ruling”).  

The full judgment from the Court of Appeal is available here: Re AH (Serious Medical Treatment) [2021] EWCA Civ 1768

Grounds of Appeal

There were five grounds of appeal, only one of which was successful. 

  1. The judges did not consider that Hayden J had given insufficient weight to AH’s earlier capacitous decision (as recorded on a ReSPECT form) that she wanted “full escalation of treatment”.  That, said Moylan LJ, who wrote the main judgment, relates only to emergency care and treatment, and not to her current ongoing situation.
  2. The judges did not accept that Hayden J had failed to appreciate the overwhelming importance, to AH, of her religious and cultural values and the impact of those on her treatment decisions. They concluded that Hayden J did consider those issues and was entitled to conclude that “I am not prepared to infer that it would follow that those views would cause her to oppose withdrawal of ventilation in these circumstances …”
  3.  The judges did not accept that Hayden J had failed adequately to consider AH’s past and present wishes and feelings.
  4. The judges did not accept that Hayden J had failed properly to balance the inteference with AH’s right to life in accordance with the European Convention on Human Rights.

As Alex Ruck Keene puts it: “The Court of Appeal were at pains in this case to make clear that this was not a case where it considered that Hayden J had necessarily reached the wrong decision as to where AH’s best interests lay.”

The appeal was successful on the fifth ground of appeal.

5. The judges accepted that Hayden J’s visit to AH in hospital, and the use he appeared to make of it in his judgment, undermined the fairness of the process and the validity of his decision. Hayden J visited AH after the conclusion of the hearing and without subsequently reporting back to the parties about what transpired during that hearing, or his interpretation of that.  In his subsequent judgment he wrote: “I got the clear impression [AH] wanted some peace, she showed me that she did”.  This is capable of being interpreted as indicating that Hayden J considered that AH had given him some insight into her wishes.  This is problematic on two grounds. First because Hayden J is not properly qualified to make any such assessment, given AH’s complex medical situation; and secondly because in order to ensure procedural fairness, the parties needed to be informed about this and have the opportunity to make submissions.

On that basis – and that basis alone – Moylan LJ, “very regrettably,” came to the conclusion that Hayden J’s decision could not stand and must be set aside, saying that “There will need to be a rehearing which will have to take place as soon as possible”.

The key message of the appeal for those involved in the Court of Protection is a pressing need for guidance on judicial visits to the person at the centre of the case (e.g. Pressing need’ for guidance on judicial visits in CoP – McFarlaneThe black box of the judicial visit to P – the Court of Appeal’s concerns and requirements‘).

What happened at the hearing on 29th November 2021?

The hearing was listed for an hour, starting at 9.30am[1] – from which I deduce that it was slotted into the listings before the usual court sitting times in response to the Court of Appeal ruling that the re-hearing “will have to take place as soon as possible”.  

The family had new counsel, Simon Miller of Harcourt Chambers, acting pro bono through the Bar Pro Bono Unit (without, as yet, a solicitor). Three of AH’s four children were in court, as well as her sister.

As before, Nageena Khalique QC continued to act for AH via the Official Solicitor, and Katie Gollop QC continued to represent Cambridge University Hospitals NHS Foundation Trust.  

The Trust

Katie Gollop QC (for the Trust) said that to “start from the end and work back[2], the final hearing had been listed for 7thand 8th December 2021, although she understood there was an application from the family to push that back.  Before those dates, it would be necessary to get updated medical evidence, provide the full set of medical records since the last hearing to the parties, and give the family the opportunity to update their witness statements. 

Additionally, the family were asking for a capacity assessment of AH to be performed by someone outside the Trust, and they would like to be involved in the choice of assessor.

She added that the ICU at Addenbrookes is “at capacity at the moment” and that “a Winter surge is anticipated by 13thDecember.  Preparation for more capacity is being made.  If it’s in the best interests of AH to be ventilated the hospital will continue to do so, but that is the situation, with intense pressure on resources and concomitant intense pressures on staff, and that’s why we’ve asked for an early hearing”. 

The Official Solicitor

Nageena Khalique QC (for AH) said “We are going to propose updated evidence from Dr Danbury.  He’s available on 8thDecember only, for oral evidence. He’d require records from July onwards by the end of tomorrow midday.  He’s indicated that he can then provide an updated report, possibly by the end of Friday but certainly by 9am on Monday 6thDecember”.  

She listed some of the medical records he’d need (CAT scans, nerve biopsy, EEG and so on) but said he was “working on the assumption that he does not need to see her unless there is something in the records that alerts him to the contrary”.  

She suggested that, if the family want another capacity assessment, then (although “the Official Solicitor doesn’t see the need for one”) Dr Danbury as an independent expert, might be asked to see if there’s anything in the records that gives rise to the need for a further capacity assessment.  She suggested, too, that the family could send Dr Danbury the videos they have made which give them hope that their mother might be recovering further, and might even have capacity to make her own decisions.

The family

Simon Miller (for the family), said he’d only had a chance to speak to family members for the first time that morning. 

He said there was a broad measure of agreement with the proposals from the Trust and the Official Solicitor.  In particular, the family felt that the videos they’d made would be helpful to Dr Danbury.  

He gave an example of a recent event which they saw as evidence of improvement: “they were joking with their mother and she laughed and giggled back.  They believe there is a response that is coming back from her that they haven’t seen before.  It may be small but it is important to them that there is an engagement from their mother when she hears their voices and, indeed, what they are saying”. 

He raised the question as to whether the final hearing might reasonably be deferred with reference to “the well-worn mantra that justice must not be sacrificed on the altar of speed” (a near quotation from para. 40 Mrs Justice Pauffley in Re N (A child) [2014] EWHC 270 (Fam).   

He said that the family would need time to digest the report from Dr Danbury – and especially if it was only provided first thing Monday morning (with a hearing on Tuesday and Wednesday) the court should “exercise some caution”.  There needed to be time allowed for them to reflect on their response, not just individually, but to share their views within the family as well.

There was also an issue with an application for a Property and Affairs Deputyship which Simon Miller raised and Nageena Khalique supported,  saying that there was “financial hardship for the family”.  The Deputyship, she said,  “was going to be dealt with by Mr Justice Hayden but essentially it got stalled, and in fact it would be quite straightforward for the court to make this order, dispensing with some of the procedural hurdles.  In the circumstances the Official Solicitor supports the making of a Deputyship order so that property and affairs matters can be dealt with as a matter of urgency.”

The judge seemed favourable to this position.

Simon Miller said, “Thank you. That’s very reassuring to the family.”

Timetabling matters and other details

The judge asked for a written document to accompany the videos to be sent to Dr Danbury (and acceded to Simon Miller’s request that this is not “formalised within a COP statement”).  

Katie Gollop reported new information she’d just received that a formal capacity assessment had been undertaken on Friday and that “nobody in the Trust considers AH has regained capacity to make her own medical decisions”.  Apparently Simon Miller’s clients (AH’s children) had not seen this capacity assessment.

There was some further discussion of timetabling: Dr Danbury’s report will hopefully be received by 4pm on 3rd December and the family evidence (having read it) will be due at 2pm on 6th December.  If Dr Danbury’s report is not available until 9am on 6th December then the family evidence is due at 9am on 7th December.   The hearing will be listed to start “not before 11am to give everyone time to absorb the documents”. 

It’s planned that the treating clinicians will give evidence on Tuesday, Dr Danbury on Wednesday morning, and then the family after Dr Danbury  (although Katie Gollop suggested that it may also be possible to hear some family evidence on the first day of the hearing).

The judge sought to establish what it would be necessary to hear in court: “The previous medical history was dealt with in detail and was tested in court. It seems to me we don’t need to go back historically because of the detail in the judgment”.  This seemed agreed.

Simon Miller said that Paragraph 69 of Mr Justice Hayden’s judgment “would appear to be the main issues for this court to consider”.

69.              Some key facts:

                                                            i.            AH is currently being cared for in a critical care unit and is dependent on mechanical ventilation, continuous nursing care, nutrition and hydration delivered via a nasogastric tube, and receiving various medications. Dr B described the burden of the ventilation on AH as the equivalent of being compelled to run a marathon every day;

                                                         ii.            AH requires frequent suctioning of her trachea to control respiratory secretions, this is, all agree, extremely painful (my emphasis). She is turned frequently to avoid pressure lesions and a hoist is used to allow her to sit in a specially adapted chair. The burden of the turning means that her rest is constantly disturbed. Added to this, is the inevitable noise generated in the ICU, which I witnessed and was rather surprised by on my own visit. AH has a urinary catheter and a rectal tube to manage faeces. She is unable to move other than small movements of her head and neck;

                                                       iii.            The care for a patient in this condition is, in Dr A’s words “associated with a loss of dignity and a total loss of autonomy – she is unable to provide consent and cannot participate in any meaningful choice about how she is treated. This extends from decisions of the utmost gravity, such as withdrawal of treatment, to very modest choices like whether her head faces the window so that the sun warms her, or whether her head does not face that way because the light hurts her eyes.”. I signal that, in my judgement, this weighs very heavily both in evaluating the quality of AH’s existence and in assessing how she would regard her present circumstances;

                                                        iv.            It is impossible to reverse, treat, or ameliorate any of the effects of the damage to her peripheral nervous system or brain;

                                                          v.            Until recently the treating team were concerned that if her consciousness level improved, she may become increasingly aware of her condition and its consequences and that her distress would worsen. They wished, if possible, to reach a consensus about her best interests before this occurred. They were concerned that whilst she may never recover capacity, the countervailing disadvantage of neurological improvement might be that her increasing awareness would be associated with inconsolable distress. It is Dr A’s settled view that such a point has now been reached. Ms C (senior nurse) also agrees with this as does Dr B. Indeed, in my judgement there is universal professional consensus on this important point;

                                                        vi.            During examinations, and for some time now, AH has become distressed, cried and appeared anguished. This occurs on every occasion. As I have already mentioned, this is reported to be very distressing to those who are treating her, particularly the nurses, because it makes them feel as if they are causing rather than alleviating discomfort;

                                                     vii.            The above describes a parlous existence but into this misery are the shafts of sunlight created by the presence and reassurance of her family. This is plainly both meaningful and important to AH, but it does not abate her physical and mental discomfort which continues in their presence. This I also saw on my visit as well as M and A’s sensitive efforts to ameliorate it. (I was shown a video of AH having a visit from her grandchildren. Her bed had been pushed out into the garden. She was undoubtedly happy to see them. I am also constrained to record that both the eldest son K and Ms C told me that AH had been initially resistant to the visit because they both strongly sensed she did not want her grandchildren to see or remember her in her present state);

                                                   viii.            Dr A is “now deeply worried that her awareness has reached a point where all she is able to focus on is fear, anxiety, and hopelessness”. He considers AH’s “recall is minimal” and speculates “it is possible that she relives the discovery of her condition repeatedly” (with respect to Dr A, whose evidence I have found to be extremely impressive, I am not prepared to follow him in that last speculation, for which I can see little, if any, forensic base);

                                                        ix.            Dr A concludes that “I cannot reasonably believe that she would choose to live in this way, unless there was a clear signal from prior discussions with her family, or evidence of any previous statements she may have made or written”.

Capacity

Katie Gollop was still concerned about the possibility that the family position would now be that AH has capacity to make medical decisions for herself – and the burden this might place on clinicians if their evidence was required to counter this since “they have a lot on their plates at the moment”.  She said:

I wonder if it would be fair to ask this.  If the capacity assessment on Friday is emailed by 11.30 this morning, can the family notify us by 4pm today whether it is their position that AH now has capacity to make the decision in question, and if that is their position, whether there are factual aspects of the assessment documented in the record that they wish to disagree with.”

After some to-ing and fro-ing, it was agreed that the family would do so by 9am the following morning.

As I left the hearing, the judge was asking whether there could be an agreed note about the clinical picture at the time of the last hearing (or at the time of the judgment).

All this detailed planning – what exactly needs to be provided by what deadline and by whom – is part of preparing for a full hearing, especially where (as here) matters are contested.  

Hearings like these feel relatively pedestrian: they lack the intrinsic interest we all feel about the ethically weighty decisions made in final hearings.  

But they are the essential scaffolding upon which those final hearings depend.

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


[1] The hearing continued beyond 10.30am – though it seemed to be winding down – but I left at 10.30am for another hearing, so am not able to report on anything that happened after then.

[2] We are not allowed to record hearings, so all quotations of things said during the hearing are as accurate as I can make them, based on rapid typing during the hearing (I do not have shorthand), but are unlikely to be verbatim.

Photo by Clark Gu on Unsplash

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