On Friday 9th July I observed the third in a series of hearings we’ve covered before Mr Justice Hayden concerning WA (COP 13617268).
The first time, a year ago on 9th July 2020, I was one of a number of observers who co-authored a blog about the case (here): there is also a published judgment.
A subsequent hearing, on Tuesday 25th May 2021, was blogged about by Gillian Loomes-Quinn (here).
The man at the centre of the case, WA, claimed asylum in the UK in 2009 and was granted indefinite leave to remain on 23rd July 2009. According to the published judgment:
“WA had escaped from his native Palestine where he reports having suffered sustained physical abuse by members of Hamas in consequence of his refusal to act as a suicide bomber. It is said that his Grandmother had been able to provide a bribe to a Hamas soldier to facilitate WA’s escape. His Grandmother was also able to finance and arrange for WA to leave the country. He travelled to Italy, where he initially claimed asylum. In Italy, WA and one other boy were allocated a foster carer. That proved to be a disastrous placement, both boys were physically and sexually abused and the other boy was ultimately killed, having been kicked to death by the foster carer. There is a good deal of corroborative material to support these accounts, not least evidence of extensive injury, including stab wounds and a crudely amputated index finger. WA has suffered post-traumatic stress disorder and depression“. (https://www.bailii.org/ew/cases/EWCOP/2020/37.html)
WA was placed with foster carers in the UK. They have a close relationship with him and he refers to them as “Mum and Dad”.
WA had been told by his Grandmother before he left Palestine that his date of birth was 29th December 1994. The subsequent age assessments concluded that WA was five years older than he believed himself to be. The Home Office determined that WA’s date of birth should be 19th April 1989. It is this date that now appears on WA’s biometric records. As Hayden J reports in the earlier published judgment: “For WA the removal of his date of birth is perceived as a fundamental violation of his own rights and an assault on his identity“.
In September 2020 WA’s application to have his biometric age changed to the age he believes himself to be was refused by Upper Tribunal Judge Pitt. His appeal against that decision was dismissed by the Court of Appeal on 12 January 2021 (here). WA is currently awaiting a decision from the Supreme Court as to whether or not he has leave to appeal.
As we reported in the first blog, WA launched a hunger strike somewhat over a year ago to seek to persuade the Home Office to change his date of birth to the one that he believes to be accurate. This led to the first Court of Protection hearing, since doctors wanted to administer clinically assisted nutrition and hydration to preserve WA’s life.
At the July 2020 hearing, Mr Justice Hayden determined that WA did not have the mental capacity to decide to refuse clinically assisted nutrition and hydration (his hunger strike is “a maladapted response – an attempt to regain control as a result of the trauma he has suffered”) so it was for the Court to make decisions on his behalf. However, it was very important not to coerce him. So, despite the fact that he lacks capacity to decide for himself about clinically assisted nutrition and hydration, it should not be forced upon him.
Hayden J also found that WA did have litigation capacity and is therefore able to instruct his legal team (rather than being represented by the Official Solicitor or an Accredited Legal Representative).
The issue before the court today was: given the poor state of WA’s health (due to his hunger strike) where should he be cared for? Should he remain with his parents at their home with appropriate home carers and respite care, or should he move into a specialist residential care home? (No capacity assessment has been undertaken regarding decisions concerning his residence or care.)
The issue today – care at home or a nursing home
Mr Justice Hayden said early on that the issue today was centred on the place of care for WA.
At the previous hearing, WA was in hospital following a suicide attempt (described by Hayden J as a “cry for help”) but was medically fit for discharge and he has since been discharged to his parents’ home.
The hearing had initially been triggered by a request for a package of home care and for respite care for WA, to support his parents – described in the last hearing as “visibly exhausted and emotionally drained.
But it was made clear at the beginning of the hearing that WA has said that he wants to go into a nursing home, and has specified locations distant from his home town. He believes that his parents have done enough for him, and he no longer wishes to remain living with them.
Hayden J read out part of WA’s note to him: “I would rather choose to go into a nursing home until God takes my soul”. According to Mr Justice Hayden, “Speaking with absolute candour, I have the sense that he is letting go – that he doesn’t want any more treatment.”
WA was represented by Arianna Kelly of 39 Essex Chambers. As noted, he has previously been found to have litigation capacity and so is able to instruct his legal team directly (instead of via the Official Solicitor or an Accredited Legal Representative). She did not represent WA’s current position on residence and care (his wish to go to a care home) but instead argued for a home care package.
Miss Kelly: “Today seems to be a day where he’s taking a view like that. In the last 24 hours he has been feeling quite low, and a bit hopeless. But most days that’s not the case. Last week he was quite clear he wanted to remain living with his parents at home, and was open to the idea of having some carers come in. I do not think he is letting go of his life. His mood is not the same from day to day”.
WA’s evidence
When the question arose about WA giving evidence, the judge asked if WA would prefer to do so without members of the public present, but his counsel said that WA was happy to speak in front of everyone because he “was hoping to draw more attention to his cause”.
He was seated on a sofa with his mother and was visibly very distressed. He talked about how hard it had been for him in the hospital, and how badly he felt he had been treated. At various points he was crying and it was sometimes difficult to work out what he was saying. “All I want is to get my identity back and live my life” he said at one point, “They have taken my identity and my soul”. He talked about his pain: “Pain, in my heart, pain in my leg, pain in my arm, pain in my stomach – I cannot deal with the pain anymore”.
Sobbing, he said: “It’s better for me to give up, I am in pain. It would be best to die far away from Mum and Dad. I don’t want them to see me suffering any more. They are suffering along with me. I want to go far away and die in peace. There is no other way but to die. I cannot do this anymore, really I can’t. They can collect my body when I’m dead”. (WA)
It was very hard to watch. His mother, too, was crying – wiping his tears, holding his hand, trying to calm him. Afterwards the judge said, “That took a lot of effort and energy to tell me. I think we’ll just have a few minutes break.”
Mother’s evidence
After a few minutes break, Mr Justice Hayden said to WA’s mother: “one of the reasons WA wants to go into a care home, is because he think you and his dad are exhausted by having to deal with his physical pain and emotional distress. I know this is very difficult for you, but what do you say about that?”
She replied by re-emphasising her absolute commitment to WA:
“It’s a big responsibility to have children. If they become ill or distressed in any way, most parents step up to the plate. While WA is not our child by birth, he came to us 12 years ago. We recognised the pain he was in. We stepped up to the plate. We’ve looked after him. We’ve protected him. And there is no stepping back on this. We really truly believe that his life is worth something. I’ve had to say, ‘it’s me that’s looking after you, not you that’s looking after us’. I do not want to step away from my responsibilities. You take children into your home and create an environment where you hope they will be able to recover. I’ve worked so hard. I’ve turned myself inside out for him, and it’s so distressing that that Home Office won’t help. This young lad doesn’t want very much. Just his date of birth, his identity.”
She worries that in a nursing home, the medical procedures risk triggering memories of the abuse in Italy, and re-traumatising him. One example mentioned earlier in the hearing was the use of suppositories for pain release – his refusal of this method of pain relief is directly associated with the sexual abuse he suffered.
So it was clear that although WA was now saying that he wanted to go into a care home, neither his mother nor (apparently) his own legal team, supported him in that position.
Questions of capacity – including litigation capacity
Mr Justice Hayden earlier ruled that WA does not have subject matter capacity in relation to decisions about clinically assisted nutrition and hydration. The significance he gives to his date of birth (an “over-valued idea”) obscures his capacity to make a decision about tube feeding.
There has been no assessment of WA’s capacity to make decisions about residence and care, but my understanding of WA’s counsel’s position is that WA does have capacity to make these decisions – and that, like anyone else, his decisions may change from day to day (without this necessarily being evidence of ‘fluctuating capacity’).
A key issue was WA’s capacity to conduct this litigation. Having ruled a year ago that WA did have capacity to conduct litigation, Hayden J asked for this to be reassessed.
The problem was that WA’s counsel, Arianna Kelly, was taking the position that WA should have a home care package, whereas WA himself, in court today and in a note sent earlier to the judge, said he did not want a home care package but wanted to move to a nursing home.
The note included these sentences, read out in court by Hayden J: “I’ve chosen this path because I don’t want my home to become a care home. I don’t want to be forced to have care at home”.
“At the moment, that’s his own filed position”, said Hayden J. “I’m suffused with sympathy for your position, Miss Kelly, but I can’t allow the court to be in a position where the advocate is saying, ‘well this is what he says today, but what he really means is something different’”
Mr Justice Hayden continued:
“The oral evidence he gave today is consistent with his written statement, and not with your position. You are trying to present what he says as part of a wider picture, but that conflates the role of lawyer with that of other professionals.”
Later he said: “There is a difference between the case advanced by WA’s advocate and the case advanced by her client in writing. I am profoundly uncomfortable with Miss Kelly’s view of what WA’s position is and what WA tells me it is.” According to Hayden J, “The trouble is that Miss Kelly has found herself in an invidious position. She finds herself submitting very lucidly that what WA says today and in his statement on the last occasion, expressly, is not in fact his wishes.”
It is fairly common in the Court of Protection for counsel for the protected party (P) to take a position that is distinct from – and may be opposed to – the position adopted by P themselves. (See “Litigation Friends or Foes: Representation of ‘P’ before the Court of Protection“, by Alex Ruck Keene, Peter Bartlett and Neil Allen.) But this situation, if it occurs, is when P has been found to lack litigation capacity and is represented via the Official Solicitor. That is not the case here. This P (WA) has been found to have litigation capacity and is instructing his own legal team.
Noting the manifest discrepancy between what counsel for WA was saying and what WA himself was saying, there was some discussion about whether in fact WA has litigation capacity and it was agreed that this should be looked at again.
Hayden J also noted that WA “doesn’t want to be in court proceedings”, that there is “a crushing weight of litigation distress that I would like to minimise if we can” and asked “whether we actually need to litigate at all”.
At some point another barrister, Emma Sutton appeared in court (“parachuted in” is how Hayden J put it) and it was agreed that she would act as “advocate to the court” for the next hearing on 28th July 2021 – and it was also decided that there should be an expert report available for the next hearing about whether WA has capacity to make his own decisions about residence and care, and whether he has litigation capacity.
Jo Beswick is a Senior Lecturer in the School of Law, Policing and Forensics at Staffordshire University. She tweets @DrJoBeswick
On Tuesday 13th July 2021, a judge ruled that JS, a fifty-year-old man with a severe learning disability, must be vaccinated against Covid-19 – notwithstanding the firm objection of his parents, who believe that their son’s learning disability was caused by the triple vaccination for smallpox, diphtheria and polio he was given as a baby.
The parents are not “anti-vaxers” – indeed, both have been vaccinated against Covid themselves – but they believe that JS is particularly vulnerable to harm from vaccinations and that the Covid vaccine “may cause him more damage”.
The hearing (Case no. COP 13758986) was before District Judge Glassbrook sitting in Northampton County Court. (These cases are no longer heard only before Tier 3 judges, see para. 35 https://www.bailii.org/ew/cases/EWCOP/2021/31.html)
I also observed the directions hearing (with different counsel) before the same judge four weeks earlier on 14th June 2021. The judge took some pains to ensure that the final hearing was “reasonably speedy” following the directions hearing because “if he’s to have the vaccination, it had better be soon: without it, on the applicant’s case, he’s at continuing risk”. Both hearings were via MS Teams.
The applicant was the GP Practice, represented in the final hearing by Conrad Hallin.
The parents appeared in court as litigants in person.
Is JS at risk of covid infection?
Until January 2018, JS lived at home with his parents. Since then, he’s lived in a specialist placement for people with learning disabilities and complex needs. His mother said: “the only reason we put him in a home is so that he has a place to live when we’re no longer around. It doesn’t affect our responsibility for him at all. He’s been coming home every weekend”.
According to counsel for the GP Practice, JS is at risk of covid (as we all are) but this risk is increased by his age, his sex, his severe learning disability, and the fact that he lives in a care home. It is also increased in part because he is “very sociable”: prior to the pandemic he attended a day centre four days a week, and he enjoys nightclubs, bowling, swimming, and the local boating lake.
This description was later contested by the parents. His mother said:
“There’s not been enough investigation of JS’s lifestyle. ‘Social’ means a very different thing to JS than to another adult in this society.He’s quite protected in the environment that he’s in – everywhere he goes he’s with at least two carers. He needs assistance with walking, for balance. If he’s sat down, he will stay sat down. He won’t be using public transport: if he goes anywhere, it’s in the protected environment of a minibus. So he has very little contact with a wider public.When people say he’s ‘socially active’ that makes it sound that he’ll go into supermarkets on his own. I don’t want to put words into people’s mouths, but he won’t go into supermarkets. If he goes to a disco he won’t be standing up and dancing, because he can’t.”
Later, she said, “He likes going out, but he doesn’t socialise because he can’t” and when Conrad Hallin said, “He enjoys the company of other people”, his father replied: “At a distance. He’ll be sat down on a seat, and if he sees children playing, he smiles – but he doesn’t go up and talk to people.”
His mother was clear that “I’m not querying in general about how virulent the virus is, but I’m querying how likely it is that JS is going to get it.”
The issue of whether or not, in fact, JS is “sociable” and what that means for him was repeatedly raised as a relevant consideration in making the decision about vaccination. According to his mother, “JS’s particular lifestyle means he is protected from the wider community” – he doesn’t socialise with strangers, the staff at the care home are all vaccinated and regularly tested. His father pointed out that he’s been theoretically “at risk for the last 18 months and he could have caught it – and he hasn’t” – which he puts down to “good management of the care home”.
The GP Practice and the Accredited Legal Representaive, on the other hand, were concerned about the risk to JS from care home staff (especially with the cessation of covid restrictions from the following week, and the spread of the new Delta variant) and the possibility that, without vaccination, JS would be stopped from doing activities he enjoys (like swimming) which require close proximity to staff who might be carrying the virus.
Capacity
There was no dispute as to capacity. His mother said at the directions hearing that it was “pretty obvious that he doesn’t have mental capacity”. But the judge noted that “the COP3 [capacity report] isn’t quite as full as one would ordinarily anticipate” and asked for another capacity assessment in time for the final hearing. The subsequent assessment confirmed that JS is not able to understand information about the vaccine – despite various attempts at conversations using Mencap easy read vaccination cards, picture and signs as well as words. A decision was, therefore, required in his best interests.
Wishes and Feelings, Beliefs and Values
As part of a ‘best interests’ decision, it is necessary to take into account the views of the protected party (s. 4(6) Mental Capacity Act, 2005). It had “proved impossible” to ascertain JS’s wishes and feelings about vaccination.
Apparently, JS is “quite amenable to venepuncture” i.e. having a vein punctured as part of a medical procedure such as to draw blood (this was mentioned by the judge towards the end of the hearing), “so it’s said he’s unlikely to object to being vaccinated, but the idea in the event that he does is that someone should hold his arm to make sure he can be vaccinated”. This was confirmed by JS’s mother, who said, “you’re not going to have too much trouble vaccinating him: you might have to hold his hand, but he will smile; that’s not our concern.”
As the judge said, JS “may not understand whether the needle is for taking something out or putting something in” so not objecting to the needle is not the same as not objecting to (or agreeing to) vaccination as such.
Counsel for the GP Practice speculated on “the beliefs and values that would be likely to influence his decision if he had capacity” and “the other factors that he would be likely to consider if he were able to do so” (s.5(6) Mental Capacity Act). He argued that “it would be unlikely for any adult to wish to be at risk of severe disease and death” and took the position that JS, if capacitous, would be that hypothetical person of legal fiction, the ‘reasonable man’:
“It is reasonable to consider that any person with capacity who was at heightened risk from Covid-19 would wish to minimise the risk of serious disease and hospitalisation through vaccination, and would be willing to accept the miniscule risk of harm from the vaccination.” (Conrad Hallin, Counsel for the GP Practice)
The parents took the opposing view that it would be reasonable for JS, if he had capacity and understood the damage that had (they believe) been caused to him as a baby by the triple vaccine, and then by the measles vaccine, to decide not to risk another vaccination with the real risk of vaccination damage.
My own view is that claims about what someone who’s never had capacity would decide if in fact they did have capacity and were acting reasonably are rather nonsensical. They tell us more about the speaker’s own wishes, feelings, beliefs and values (and what they think ‘reasonable’) than those of the protected party.
The Position of the GP (and Accredited Legal Representative)
The GP Practice (represented by Conrad Hallin) had “felt compelled” to bring this application to court because “as long as he remains unvaccinated, JS is at serious risk of covid, including serious disease, long-Covid and death”. Balancing the “minute” risks of vaccination against the very severe consequences of Covid – especially for someone with learning disabilities – the GP Practice came down firmly on the side of vaccination. The Accredited Legal Representative took essentially the same position.
In support of the position for vaccination, the GP presented evidence from the medical literature that “approximately 14% of all people with covid-19 develop severe respiratory disease with T1RF [Type 1 Respiratory Failure], and a further 5% will become critically unwell, many of whom will require intensive care”. Extrapolating from this, if he were to contract covid, JS would have around a 1 in 7 chance of developing severe respiratory disease and at least a 1 in 20 chance of requiring intensive care – these estimates are not adjusted to take account of JS’s learning disability or the impact of more virulent recent variants. Counsel for the GP reminded the court “the Delta variant is picking up and we may be on the cusp of another wave”. It was also less than a week before so-called ‘Freedom Day’ in England, with the lifting of covid restrictions likely to mean increased risk of contracting covid.
The risks of vaccination were (said Conrad Hallin) “miniscule”. According to the Medicine and Healthcare products Regulatory Agency (MHRA), addressing the risk of blood clots:
“By 31 March 2021, a million doses of the COVID-19 Vaccine AstraZeneca had been given in the UK meaning the overall risk of these blood clots is approximately 4 people in a million who receive the vaccine.” (here)
Under cross-examination by Joseph O’Brien (representing JS via his Accredited Legal Representative), the GP described CPAP (continuous positive airway pressure) – the treatment for severe respiratory disease. It involves wearing a mask “like the Darth Vader mask in Star Wars – it covers most of the face”, and it “forces you to breathe in and out, which feels unpleasant”. The GP expressed concern about whether JS would tolerate this treatment. She said he would likely find it “distressing and intolerable” and quoted from an article in the British Medical Journal:
If CPAP is ineffective, or can’t be used (e.g. because JS resists it) ,the next stage is “intensive care – a tube down the throat and into the lungs, with a machine breathing for you – it’s very invasive”.
All this, as Joseph O’Brien highlighted, at a time when “we are coming out of the national lockdown” and the rate of infection in the geographical area where JS resides is “higher than the national average”.
Offered the opportunity to cross-examine the GP, JS’s mother asked “Have there been any covid trials on brain-injured people?”. The GP said there had not, but that the ‘yellow card’ system had not indicated that brain-injured people were at any additional risk of damage from the vaccine.
The mother then asked, “Do you know how many people who have brain injury have abstained from having the vaccine, whether it was they who said ‘no’, their parents who said ‘no’, or their doctors who said ‘no’ – because they wouldn’t be in the statistics, would they, if they said no”. The GP said she didn’t know the answer to that question.
The judge intervened to address the GP:
For the GP Practice, then – and also for the Accredited Legal Representative – the risks of vaccination are low and the benefits in terms of protection against serious illness are high. Their position is that JS should be vaccinated.
Parents’ Position
The parents did not really dispute the statistical evidence. What they challenged (repeatedly) was its applicability to JS as an individual – a person they know better than anyone else, a person who lived with them for 47 years, a person they love dearly and see regularly.
At both hearings (the earlier directions hearing and this final hearing) JS’s parents told the story of how the triple vaccine damaged JS, and they repeatedly emphasised their sense of responsibility for the harm they allowed to be caused to him by this – and by the subsequent measles vaccine. Their sincerity and depth of love for JS was beyond question.
Although copies of JS’s medical records had been ordered for the final hearing with a view to uncovering evidence of vaccine damage when JS was a baby, it proved – as the parents had predicted (at the directions hearing) – that “you won’t find any record of vaccination damage”. They described what happened when they noticed that their son was “floppy” back in the 1970s after receiving the triple vaccination:
“We were naïve; we thought it was temporary. The doctors didn’t say it was vaccination damage. We said ‘look how he is – he wasn’t like this at birth’ and they said, ‘oh he’ll be okay’, but he wasn’t. We didn’t realise it was vaccine damage and we went ahead and let him have the measles vaccination, and it affected his left eye.”
At both hearings they also referred to a doctor in London who examined JS in the 1970s and found his condition “consistent” with vaccine damage – but there seemed to be no documentary evidence of this report.
When JS’s father received his covid vaccination, he reported side effects – which also caused his mother alarm for JS:
“I think JS is susceptible to reactions. His father here, when he had the vaccine he had very severe headaches for seven weeks. That’s an exceptional reaction, I think doctors would agree. I think JS will have a bad reaction – it may be genetic given the propensity of his father to having a bad reaction.”
Over and over, both parents emphasised their sense of responsibility for JS’s health and well-being and their reluctance to agree to a vaccination that might harm him.
When the judge asked “what about his quality of life if he gets the disease?”, his mother replied: “Well, we are the ones who would take responsibility for that – whereas no one is taking responsibility for further vaccine damage. The decision-makers wouldn’t be around.”
This reminded me of a similar issue for the daughter of a 70-year-old care home resident in a case before Mr Justice Hayden back in February 2021, when (after the judgment that vaccination was in P’s best interests) the daughter asked who would be liable if anything happened to or went wrong for her mother as a consequence of having the vaccination: “Hayden J’s simple and immediate response was ‘Me’ (see the blog post by Bridget Penhale).
In this hearing, too, the judge took responsibility for making the decision – either to administer or not to administer the vaccine – and explained the basis on which he was making that decision.
The judge’s empathetic recognition that JS, for his parents remains their “little boy”, and their responsibility – despite the law that makes this decision the responsibility of the judge – struck me as a very helpful and supportive aspect of this exchange (and it came at a point where it might have been tempting to argue about who it is who cares for JS now, and where – in fact – the legal responsibility lies).
The value of the GP’s evidence (especially under cross-questioning from Joseph O’Brien) was also apparent in displaying for the benefit of the parents how their son would suffer if (contrary to their expectations) he did contract covid.
When Joseph O’Brien cross-questioned the parents, he toned down his usual robust style – but nonetheless led them to “accept there’s a risk” of JS contracting covid, and created the space for JS’s mother to make a statement subsequently seized upon by both barristers and by the judge. She said:
“We’re scared of him having the vaccination. We’re scared of him not having the vaccination. It’s a scary world at the moment.” (JS’s mother)
Closing Submissions
On behalf of the GP Practice, Conrad Hallin’s closing submission first addressed the issue of capacity. If a person has capacity to make their own decision, then the court has no jurisdiction to make that decision on their behalf.
In this case, everyone accepted that JS lacks capacity to make his own decision about vaccination, despite the efforts made to support him to do so – and it was agreed that this is caused by “an impairment of, or a disturbance in the functioning of, the mind or brain” (s. 2(1) Mental Capacity Act 2005), i.e. his learning disability.
This triggers the best interests jurisdiction, i.e. “An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests” (s. 1(5) Mental Capacity Act 2005)
Conrad Hallin pointed out that the question of whether or not JS’s learning disability was caused by the triple vaccine “is not a matter that can be confirmed by the medical records”. Concerns about the pertussis vaccine were real (albeit often rebutted e.g. here and here) and “the reality is that we don’t know”. The belief that earlier vaccination caused JS’s brain damage does, however, go to the heart of “understanding the motives of [the parents] in this case”. They have, he said, “understandable fears”.
Despite the parents’ fears, the “objective evidence” is that vaccination is extremely unlikely to cause JS harm. Counsel ran through the risks of covid vaccination (a 4-in-a-million chance of blood clots with AstraZenica with a 1-in-a-million chance of dying as a result; the “vanishingly small” risk of anaphylactic shock from the other vaccines; some minor side-effects from all three). He contrasted these with the risks of not having the vaccine: “a 5% or higher chance of dying if a member of the general population contracts covid”.
“In their written evidence, the parents say they don’t want to gamble with JS’s life or with his health. I’m afraid NOT having the vaccine is to gamble with JS’s life and health. It’s also urgent. The Delta variant is picking up. The country is about to unlock in a week’s time – slightly less than a week’s time – and cases are expected to pick up substantially from next Monday. It’s unrealistic to think that JS isn’t going to be exposed to a very heightened risk of covid in those circumstances. He should not be kept from doing the things he wants to do in order to protect him. The reality is that he has close contact with carers who may carry the virus and if they get covid they have been vaccinated and will be protected from serious disease, and his parents have been vaccinated and are protected from serious disease, but JS hasn’t been, and that is simply wrong.” (Conrad Hallin, counsel for the GP Practice)
On behalf of the Accredited Legal Representative, Joseph O’Brien “agreed entirely” and was “as one” with the position taken by counsel for the GP Practice – both on capacity and on best interests. He took some care to pay proper consideration to the views of JS’s parents:
“Their views are very important. They know their son best. They have cared for him for 50 years. Their wishes and feelings deserve proper respect from everyone in this case. They struggle with this decision. They live in fear of the vaccine and they live in fear of the disease. They are not alone. Many people share those very same concerns. At the core of it, for them, is their son’s best interests.”
However, he concluded – for the same reasons as those advanced by the GP practice – that “the GP should be successful in persuading the court that a course of vaccine treatment is in JS’s best interests”.
On behalf of both parents, JS’s mother said she wanted to counter the idea that their assessment of their son’s best interests was “just an emotional one”. She referred again to the damage caused by the triple vaccination:
“We were there. We saw how he was before the vaccination and we saw how he was after the vaccination. And we can say categorically that the vaccine did affect him. We were naïve enough to say, ‘well the damage has been done now, and vaccines are in general a good thing’, and so we agreed to a measles vaccination in 1972, and it affected his left eye and he can see very little and that has affected his way of life, and we’re concerned about his quality of life with this vaccination, if he’s that ‘one in a million’. It’s because we know what happened with the two previous vaccinations that we’re concerned with his quality of life after a third vaccination.”
And JS’s father added, “We’re still not convinced that the vaccine won’t cause JS harm”.
Judgment
District Judge Glassbrook took a break to prepare an ex tempore (oral) judgment, which he delivered at 3.00pm.
He accepted that JS lacked capacity to make his own decision and that a best interests decision was therefore needed.
He acknowledged that it was not possible to ascertain JS’s own feelings and wishes about vaccination and said, “I believe if JS could have his say, his beliefs and values would lead him to choose the route that enabled him to avoid harm and gain the best life overall”.
“In my view,” he said, “the key to the case is balancing the risks and benefits of vaccination against the risks and benefits of the virus itself”.
He was “entirely satisfied that the risk of significant harm from the vaccine is very small, and the risk of the disease is very substantial indeed”. He pointed to the benefits of the vaccine for JS in reducing his risk of contracting covid, reducing the severity of the disease if he were to contract it, reducing the risk of JS being exposed to the challenges of treatments such as CPAP and intensive care, and reducing his risk of death. Vaccination would also, he said, allow JS the opportunity to better engage in social activity.
In conclusion, JS should have the double vaccine “and should have them as soon as possible”. There is no expectation that he would resist, “but if he does so, I authorise a very limited restraint – no more than the brief holding of his arm”.
The judge acknowledged that this decision will make the parents (who “clearly love their son dearly and have demonstrated this throughout his life”) very anxious. “But I have decided what I truly believe is best for their son.”
As the hearing ended, JS’s father put a comforting arm around JS’s mother. They both looked upset and anxious. “We just hope your decision brings benefit to our son, rather than more harm”, said his mother. “Mrs S, so do I”, said the judge: “Nobody has a working crystal ball, but I firmly believe it’s the decision that’s best for JS”.
Celia Kitzinger is co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia and @OpenJusticeCOP
By Martha Purdy, Meg Aitken and Claire Martin, 22nd July 2021
Attending a Court of Protection hearing is an excellent opportunity to see justice in action. Two students, Meg – about to start medical training in September 2021, and Martha – starting A levels in September and interested in Law, joined Claire (part of the Core Team of the Open Justice Court of Protection Project), at a hearing before Mr Justice Hayden on 5th July 2021.
The case (COP 13418695) was about whether it was in the best interests of “M” to have full dental clearance (which means having all of one’s teeth removed). The applicant NHS Trust was represented by Emma Sutton. There had been previous proceedings (before Mr Justice Williams on 27th May 2021) at which it had been decided that M lacked capacity to decide upon the treatment proposed.
Mary Neal has blogged about this case in which she details the ethical considerations and procedural aspects of the case.
Emma Sutton opened with a summary of the case, which is always extremely helpful for observers. M is in his 30s and lives with his father. M requires 24-hour care and support due to ‘pervasive developmental disorder, childhood autism, mild learning disability and PTSD (due to ICU syndrome over the past year)’. M is said to have a great sense of humour, like music and has an interest in 1980s TV shows. M’s sister, O, was also a party in the proceedings, representing herself, and she brought M to life in her description of him and their weekly time together:
“He is my favourite person – I spend Wednesdays with him at the moment. When he smiles, it’s the best thing ever. He has significant difficulties with mild learning disability, autism and communication problems – but he thinks and knows how he feels.”
M has dysarthria and his primary method of communication is via a light writer. He is registered blind and uses a wheelchair. His package of care is jointly funded by the CCG (Clinical Commissioning Group) and the Local Authority (both represented at the hearing by Natalia Levine).
M was represented, via his litigation friend the Official Solicitor, by Michael Horne QC.
The Main Issues
Mr Justice Hayden wanted to explore, in detail, concerns that he had about ordering restraint for M to undergo the dental clearance, and then subsequently the possibility of M refusing to eat food that he enjoyed. He noted that M’s own wishes are important to understand, as was protecting the quality of his trust in those around him, most notably his family relationships. It was clear that he had wanted a more thorough examination of the case, and although no expert or treating witnesses had been arranged for the hearing, they were subsequently called in what became a hearing that spanned 3 days.
“P is a very young man. He has a loving family. This case needs to be considered very carefully. We are contemplating a plan in which, covertly, he’s taken to hospital – he won’t be told why. The Trust has applied for authorisation to restrain him if resists. He has shown consistent resistance [to other health interventions] – which a capacitous person might show. There has not been much dental examination because of that resistance. Restraint weighs heavily on a judge’s mind.” (Mr Justice Hayden)
I (Claire) know from personal experience that attending a court hearing can be anxiety-provoking for observers – for people like Martha and Meg, who are sixth form students, perhaps even more so than for observers familiar with the Mental Capacity Act and the care system, law, journalism etc. The ‘packaging’ around attending a court hearing, I have realised, is so important: what do I write in my email request? I haven’t got the link what shall I do?! (often the link might not turn up until very close to the start time); I can’t hear anything; Have I muted myself and turned my video off?; Will I have to speak to the judge – how do I address them?
I have only been doing this myself for about a year, and still feel worried that I will commit a terrible faux pas or get completely lost in the proceedings – or worse, do or write something illegal. Jenny Kitzinger has blogged about mentoring undergraduates, and her suggestions were really helpful when thinking about what would be useful to support our joint observations at this hearing. We set up a joint private chat group on Twitter to facilitate quick communication and for me to be able to explain things (as best I could) as the hearing progressed. There were tense moments at the start when the link had not reached us all even 4 minutes before the scheduled start:
And then, once in, dealing with unexpected computer setting disruptions right at the start of the hearing:
For Martha and Meg this was an entirely new world – they weren’t aware of the Court of Protection or the Mental Capacity Act prior to finding out about and expressing an interest in attending a hearing. So, their reflections cast fresh and unsullied eyes over the proceedings they observed.
Martha
I am passionate about a potential career in Law and next year when I begin my A levels in year 12, I will be studying History, French, Maths and Chemistry to further my interest in these subjects and also allow me to study Law.
The day before, Sunday 4th July, Claire Martin sent me the details of the hearing that would be the next day, Monday 5thJuly at 10:30am, and then assisted me in drafting an email to request access to observe. I received an automatic response; however, it was not until 5 minutes before the hearing actually started – at 10:25am – we received the email containing the link for us to join via MS Teams. This was quite stressful.
Because this was my first observation in the Court of Protection, I was shocked by how thorough Mr Justice Hayden was in his questioning. I was shocked by this because it seemed to me that Mr Justice Hayden’s thorough scrutiny and questioning was evidence of his personal compassion and ambition to do what exactly was in M’s best interest. Although perhaps ignorant, I hadn’t expected the judge to be so thorough, and not to skip over such small details as M’s favourite food for example, in order to bring the case to a close sooner. I realised the value of Mr Justice Hayden’s deep compassion.
Despite understanding that removing M’s teeth was needed because M’s current pain was unbearable and could not be maintained at the level it was, Mr Justice Hayden was keen to explore whether “less restrictive” options had been considered and importantly, discussed and questioned the impact, after the dental procedure, on M.
Mr Justice Hayden’s meticulous and forensic exploration of the case was clear to me just by watching him – he paused frequently, clearly to consider. I was also fascinated by Mr Justice Hayden’s scrutiny of each person to look at everything in the whole “sweep of [M’s] life”.
Because of Mr Justice Hayden, I was inspired to do more research of the role of the judge, and I am in awe of the role. The way in which Mr Justice Hayden considered the personal impacts, not just the medical – evaluating the impact of the dental procedure on M’s relationships with his family and the potential risk of re-triggering trauma through an understanding of M’s historical trauma and the psychological impact this can have – reminded me that with this particular judge and through Mr Justice Hayden’s meticulous exploration, the outcome of this case would be exactly what was in M’s best interests.
What also stood out to me after observing this particular case, was that there are not always major disagreements in court. I had been under the impression that all court cases have defendants and prosecutors with oppositional views who flatly argued against each other. However, through this observation I was shown this was not the case. There seemed a general consensus that M needed this medical treatment and that that was in his best medical interest, but what was discussed and worked through was in which way to carry out the dental procedure to cause M the least distress as possible. So that it was in M’s “best welfare interests as well as his best medical interests”.
The judge collected as much evidence as possible through speaking to M’s anaesthetist, GP, Dr C (a second opinion consultant in special care dentistry) and M’s sister to try and work through with the barristers and witnesses how the dental procedure could be done in the least damaging way. Everyone present in the courtroom contributed to the evidence and “discussion” as the judge described it and I was surprised to see there was very little opposition. The points of disagreements I observed came mostly from M’s sister. We learned that she was worried about the plan to use diazepam as a sedative for M to take him from his home to the hospital. She believed the diazepam sedative would not be strong enough for M and so M would be in a lot of distress and potentially this could damage the precious relationship between her and M.
I found observing the hearing absolutely fascinating. It gave me a superb insight into real life law and undermined a lot of what I had seen on TV about law proceedings and the court. This experience has widened and deepened my ambition to pursue a career in law and I hope to observe many more cases.
Meg
I’m hoping to study medicine in the future and, when a family friend (Claire) informed me that there was an open court case regarding medical ethics and treatment, I was keen to observe the proceedings.
I was impressed by how accessible the hearing was to interested members of the general public and how accommodating the solicitors and judge were at each step – briefly describing relevant information in their bundles so that all involved were clear about what was happening. I was particularly interested in the judge’s thinking, which he verbalised as we progressed through the case.
Having heard about M’s medical needs – his teeth are cracked and bleeding, causing chronic pain and limiting his food options – my initial reaction was that he should of course be treated as the doctors recommended, even if this was against his will and therefore involved physical restraint.
We then heard from his sister, who described M as a person – his interests, his relationships and her deep affection for him. It became clear, and was highlighted by the judge, that M’s relationships were absolutely central to his life and wellbeing. For him to be aware of what he might experience as a betrayal by his sister (in that she hadn’t protected him from the treatment and in fact had supported it) would leave M having to deal not only with the trauma of having his teeth forcibly removed, but potentially the loss of one of the most important relationships in his life.
The four pillars of medical ethics are autonomy, justice, beneficence, and non-maleficence. This case arguably touches on all four: M’s autonomy was being overridden, there was no clear fair outcome, and the judge was being asked to decide on his best interests without causing harm. This suggests that the role of the doctor goes beyond a narrow focus on medical outcomes to incorporate the best overall interests of the patient. This is precisely what the judge sought to do.
Two drugs were being considered to sedate M: diazepam and midazolam. Dr B (consultant anaesthetist) and M’s GP recommended diazepam, arguing that midazolam is only used in hospitals in extreme circumstances due to respiratory risks, it is off-license, and it has never been used in the community before. Diazepam would, however, not provide the amnesic effects that midazolam would, and would be more likely to require the physical restraint of M. Although post-operative psychological support was offered, the judge emphasised that this could not guarantee the protection of M’s relationships.
It was interesting to see that the argument put forward by the medics and the ambulance service prioritised the best medical interests of the patient, promoting the physically safer and more common course of action. It was the judge, M’s sister and M’s counsel who emphasised the significance of M’s relationships and so ultimately midazolam was chosen – with the CCG agreeing to source an ambulance and paramedics, meaning that the drug could be administered safely with the fall-back of professionals on site.
It was fascinating to observe the legal proceedings address such complex medical ethics and to see the judge and barristers keep the person at the heart of decision making.
Final Reflections
Observing this case was a moving experience – M was brought to life as a whole person, not just a body that required a dental procedure.
Both Martha and Meg refer to this aspect of the hearing: what we might describe as the humanisation of the person at the centre of the issue. It seems that witnessing this has been illuminating for them.
I know that, prior to the pandemic, some sixth forms offered visits to court hearings to witness law in action. The remote nature of COP hearings perhaps offers wider opportunities to inspire and help to develop students’ ethical and moral thinking. This feels ever more important as part of our civic education.
Martha Purdy is a Sixth Form student studying History, French, Maths and Chemistry.
Meg Aitken is applying to study medicine from 2021
Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core group of the Open Justice Court of Protection Project and has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin
At relatively short notice I was afforded the opportunity to observe a hearing (COP 13783897) before Mr Justice Hayden. The case (in the ‘urgent hearings list’ on 14th July 2021) concerned the proposed withdrawal of life-sustaining treatment from a lady in her mid-fifties (AH) who, having suffered severe neurological complications of COVID-19, may lack the capacity to make her own treatment decisions.
This was the first time I’d observed a hearing in the Court of Protection and the first time I’d observed a fully online hearing. Having been told about the hearing at 1.33pm, I requested a link to join proceedings via email and received the details within 10 minutes.
When I joined the hearing via Microsoft Teams at 2pm I was not quite sure of what to expect. Despite the online setting, it was clear that there was no lack of formality. Mr Justice Hayden’s clerk emphasised that this was not a meeting and very much a court setting. All participants were instructed to ensure that they were in a private space with no other persons present, or within range, so as to maintain confidentiality: those without an active role to play were instructed to turn cameras and microphones off. Everyone was reminded of the restrictions on recording and reporting. The hearing commenced with all those present instructed to “rise” as Mr Justice Hayden – who was physically present in the High Court – joined the virtual courtroom.
Mr Justice Hayden brought an immediate air of authority to the online proceedings, yet he also displayed warmth in how he approached this sensitive case from the outset. Mr Justice Hayden’s immediate priority was to establish which family members were present, and to ensure that all the family members were visible on screen: he therefore requested everyone else (other than counsel in the case) to turn off their cameras. This meant that the faces and expressions of the family were clearly visible throughout.
The Hearing
The hearing was opened by Sophia Roper, counsel for the applicant Trust. She provided a brief summary and introduction to the case. She reported that AH has suffered from a range of “profoundly damaging” neurological conditions resulting from COVID-19 infection and has been in the intensive care unit since December 2020. As later described by Mr Justice Hayden, these complications were the result of the virus having “attacked every part of AH’s body and every aspect of her bodily functions”.
The most serious complications were four separate neurological conditions: necrotising myopathy, motor neuropathy, brain stem encephalopathy and cerebral encephalopathy. The motor neuronopathy had affected at least 90% of AH’s nerve cells, resulting in loss of function from below the neck, including limited movement of the diaphragm. In addition, the brain stem encephalopathy had also caused permanent and significant damage to the brain stem itself – an area of the brain which contains respiratory regulatory centres. This means that AH is now permanently dependent upon a ventilator to breathe. AH has also lost a degree of function in the face, neck, and eyes. The damage caused to both cerebral cortices, resulting from the cerebral encephalopathy, has placed AH in a condition which is akin to, but markedly more complex than, that of ‘locked in syndrome’.
Before admission to hospital, AH lived at home with her immediate family members. During the hearing, the importance of those relationships was emphasised to the court. The court heard how AH’s family were “the centre of her world” and Hayden J commented that it was also evident that AH was at the centre of her family’s world, as evidenced by how quickly those family members had rallied to attend the High Court with less than an hour’s notice.
AH has a medical history which could have predisposed her to the severe effects of COVID-19, having suffered seasonal respiratory infections and acute bronchitis. However, the effect that the virus took upon her body was rare. AH initially contracted the virus in December 2020 and was admitted to a leading hospital. She subsequently self-discharged, but then rapidly deteriorated and was re-admitted and has been in a neurological ICU for the past seven months. Whilst AH was described as “locked in”, Hayden J emphasised his aversion to terms such as ‘locked in syndrome’ which may fail to encompass the associated complexities of these conditions. The High Court heard that AH could communicate to a degree and was able to respond to ‘yes and no’ questions with eye movements. AH’s clinical case had been referred to a national COVID neurological team which reached three conclusions about her condition;
although each of her complications has been experienced by other COVID patients, no other patient has experienced the “unique combination” that she had;
there is no additional treatment available
there is no realistic expectation of “meaningful improvement”.
The hearing arose because the Trust no longer considered life-sustaining treatment to be in AH’s best interests. It asserted that whilst there had been “limited improvement” in AH’s condition, such improvement coincided with greater awareness and subsequently increased suffering and distress. The treatment required to keep AH alive was also described as “invasive and burdensome”. Counsel for the Trust referred to one aspect of that treatment – suctioning – describing it as being painful and causing AH “significant and repeated distress”. Hayden J later acknowledged that this assessment of distress was determined by the physicians’ subjective interpretation of AH’s facial expressions.
Capacity
Although the issue of capacity was not addressed in any depth at this early hearing, the trust inferred that AH’s capacity was diminished. In accepting that AH could communicate, there was concern that her “concentration was impaired” to such an extent that she would not recognise when being asked the same question twice. So, the Trust considered that a best interests decision would be necessary since AH would not be able to make treatment decisions for herself.
Nageena Khalique QC, on behalf of AH (via the Official Solicitor), explained that the family had, in their possession, video evidence showing AH communicating that she did not want to die. Concern was raised as to the Trust’s apparent focus upon AH’s ‘negative facial expressions’ rather than her positive responses to seeing family members – something which was consistently mentioned in her notes Whilst medical records indicate that AH lacks the mental capacity to make “all but simple decisions”, Nageena Khalique QC requested that the expert opinion of a neuropsychiatrist specialised in ‘locked in syndrome’ be sought in order to “interpret her facial expressions and responses to questions”. It was noted that AH has an awareness that she is in hospital and clinicians acknowledge that she may be “emerging from a minimally conscious state”.
Family statements
As this was a directions hearing, the court sought to establish what further information was required from the parties in order both to assess AH’s capacity and to decide on her best interests. In turning to address the family, Justice Hayden explained that an assessment of a patient’s best interests involves consulting a “broad canvas of all the information which is available” and that includes obtaining a full picture of the person at the heart of such decisions. On these grounds, he advised the family to prepare written testimonies for the subsequent hearing.
With compassion, Hayden J reminded the family of the evidence that AH is “unlikely to recover any autonomy over any aspect of her life or do anything independently again.” He said, “The damage she has sustained is enormous and awful to read about” such that she “will never be able to live outside of residential care” and “things that have been dear to her, she will never be able to enjoy in the way she would have contemplated”. But he clearly stated that this “hypothetical factual matrix” (i.e. even if these facts are all true), “does not automatically indicate a clear best interests outcome”.
Brief testimony was then provided from each of the close members of AH’s family in turn. The family provided compelling testimony as to their love of AH who had consistently expressed to them, her wish to “carry on”.
AH’s sister said that AH “might have been a bit of a worrier, but she was a very strong person who faced problems head on. She had a lot of resilience”, adding: “She’s my big sister. I’ll be there for her. Nobody wants to lose a sister”.
AH’s son said that “the best person to ask is my Mum, and we have video recordings of her clearly saying she doesn’t want to be end of life”. He started to explain that treating clinician, also present in court, “has applied ridiculous amounts of pressure on the family”, but Mr Justice Hayden intervened:
“These are doctors from a centre of excellence, doing their very best. That idea is one I simply don’t accept. Everyone has a different idea of where your Mum’s best interests lie. Dr A is here in court, in his scrubs, making part of his day available so that he can better understand how to do the best for your Mum.”
Another son, who works for the NHS, described how he moved out of the family home (where he’d lived for 34 years) to protect his Mum from infection. “She’s a very strong person”, he said. “She’d want to carry on in case there was some kind of miracle or a cure was discovered in the future. I absolutely love my Mum. If she was in pain, I’d say palliative care, but she’s not in pain and the more I see her, the more alert she is.”
The oldest daughter, who lives overseas, spoke movingly:
“Mum caught the virus four days after I gave birth. Mum was really upset that because of covid she couldn’t be here with me to help me when I went into labour. I was really looking forward to bringing my son to meet my Mum. She was very excited about it. When my Mum went into hospital, the last thing she said to me was ‘I want to see my grandson’. None of us want her to go into palliative care. We are all holding out a bit of hope that she will recover. We want her to have a shot at recovery.”
The youngest daughter “lived with my Mum right up to the day she went into hospital”. She visits daily during the week (and an aunt takes over at weekends). “We all want our Mum to get better”, she said. “We are listening to what the doctors are saying, but at the same time it’s a virus nobody knows about and she would not want them to give up on her”. Mr Justice Hayden intervened again, pointing out that “nobody is giving up on your Mum” and that:
“There’s lots we don’t know about covid, but when it comes to looking at evidence about the brain, we are in secure territory and we’ve all got to be intellectually honest. At the end of the day, it is your Mum’s best interests that I have to keep unswervingly in focus.”
Having listened to the family evidence, Mr Justice Hayden said that he had “not come to even a preliminary conclusion on the evidence in this case”. He noted that “the family has unified around the same position” and said that AH “would be proud of her children – they are testimony to the strong, independent, loving care that she has provided them with”.
Ongoing treatment or palliative care?
Hayden J, with great sensitivity to the plight of AH’s family, set out the choices which were available at the subsequent hearing: that AH be discharged from the Hospital to the care of a highly specialised residential unit – a risk which would not be without significant risk to her life and well-being – or that life-sustaining treatment be withdrawn and AH placed on a palliative care plan which would be followed by the end of her life in a way which was free from pain.
Hayden J described the options before him as “awful and invidious”. Of particular concern was that AH’s complex clinical condition – which Hayden J clarified was not to be “confused with long COVID or locked in syndrome’. The complexity and severity of AH’s condition means that “70% of residential options” are simply not suitable, and therefore more information on specialist residential options is required. In apologising to the family for speaking bluntly, Hayden J explained that AH “will never be anything like she was ever again [and therefore] is it important to ask whether a life that’s of value to her can be sustained”.
In nearing the end of the hearing Roper QC requested clarification as to the independent expert witness to be consulted. Hayden J considered that the expert evidence provided by intensivists of the trust provide a “clear picture of AH’s presentation” and that while it was a “stretch” of provisions to say a further expert was required, he considered it necessary to address the family’s anxieties (which he considered to be “entirely unfounded”).
In closing, Hayden J reminded the family that both his and their primary concern should be AH’s welfare. He emphasised his hopes that the family would “engage in the process whereby everyone is considering what is best for AH”. Hayden J also expressed his wish to meet AH, whether in person or virtually, before the next hearing (provisionally planned for the following week).
Concluding remarks
Whilst familiar with many of Hayden J’s previous judgements, it was a privilege to be afforded the opportunity to attend as a member of the public on this occasion. Throughout this hearing, Hayden J created a supportive and compassionate environment in addressing what was a sensitive and complex case. He demonstrated an interest in getting to know AH and her family and spent time to ensure they understood proceedings. He explained the nature of the hearing, the potential options available and the information he would need to determine which of those options was in AH’s best interests. Throughout the hearing, he returned to the central concern which was the best interests of AH. I came away from the court, assured that the case was considered by a judge who cared about all those concerned in the hearing.
Jennifer O’Neill is a Lecturer at the University of Glasgow. She tweets @j_o_neill_
In a recent hearing (Case No. 1375980T, 10th June 2021), Mr Justice Hayden queried why a man had been given continued medical treatment to keep him alive in a prolonged disorder of consciousness (PDoC) for many years – despite evidence from some family members that he would not want this.
It appeared that clinicians had not followed legal and professional guidance about how such decisions should be made.
Whatever the complexities of this case (and I’ve written about it here), it was clear that an application to the court (if necessary) should have been made much earlier, probably around 3 years ago, back in 2018. This patient may have been subject to treatment contrary to his best interests for a very long time.
The delay in making a court application was obviously profoundly troubling and frustrating for Mr Justice Hayden, who referred more than once to the professional guidance about clinically-assisted nutrition and hydration (CANH) produced by the British Medical Association and the Royal College of Physicians (published in 2018) and to his own Guidance about when to refer cases about serious medical treatment to court (published in January 2020).
For me, as someone who often supports families in situations concerning CANH, the depressing thing about the case before Hayden J is not how uniquely delayed the decision-making was, necessitating judicial comment, but rather the reverse: whatever the unique features of this case in particular, the behaviour exhibited by the treating team, which evaded taking responsibility for making best interests decision for their patient, is widespread in many other units across England and Wales.
Mr Justice Hayden’s frustration is shared by many others working in this area – and it begs several questions: Has the recent legal and professional guidance helped? If so, how? And if not, why not? And what more can be done to improve best interests decision-making for PDoC patients?
I’m going to address these question by drawing on the work Celia Kitzinger and I have done in the Coma and Disorders of Consciousness Research Centre, which includes formal research interviews with over 100 family members of PDoC patients; delivering training about law and ethics to healthcare staff; and acting as volunteer advocates in cases where clinicians or families felt outside help was required (which we’ve written about here).
My comments are also informed by conversations with healthcare practitioners from 6 different hyperacute, rehabilitation or long-term care centres, who talked with me about what was happening in their own organisations after reading my earlier blog about this case.
Relevant legal and professional guidance
Clinically-assisted nutrition and hydration (CANH) is a medical treatment. If someone lacks capacity to consent to, or to refuse, such treatment, then decisions about CANH must be made in their best interests (Mental Capacity Act 2005).
The starting point in law is the strong presumption that it is in a patient’s best interests to receive life-sustaining treatment, but that presumption can be rebutted if there is clear evidence that a patient would not want CANH provided in the circumstances that have arisen.
Up until a few years ago, the legal advice was that withdrawing CANH from PDoC patients required judicial approval. This created several problems: in particular, it led healthcare staff to abdicate responsibility for CANH decisions, and left some families feeling unable to voice their concerns about ongoing treatment (Kitzinger and Kitzinger 2016)
However, in November 2017 there was a key hearing in the High Court about a patient called Mr Y, which was followed by an appeal in the Supreme Court in July 2018. The Supreme Court judgment (An NHS Trust v Y UKSC 46) was that it is not mandatory to seek judicial approval for decisions to withdraw CANH from PDoC patients.
In the same year, the British Medical Association [BMA] and the Royal College of Physicians [RCP] produced detailed guidance about how to make decisions regarding “Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent”. This guidance (endorsed by the General Medical Council) is complemented by the RCP’s (2020) guidance on Prolonged Disorders of Consciousness which includes detailed information about care, diagnosis and best interests decision-making processes for this patient group.
The legal situation which covers PDoC patients is summarised in Mr Justice Hayden’s general guidance on “Applications relating to medical treatment” (published January 2020). Based upon the decision of the Supreme Court in Re Y, this outlines the circumstances in which it is, and is not, necessary to make a court application in relation to providing, withdrawing or withholding serious medical treatment.
If, however, “at the conclusion of the medical decision-making process” (para. 8) there is doubt, for example because of a lack of agreement from those with an interest in the person’s welfare, and if that lack of agreement relates to the provision of life-sustaining treatment, an application to the Court of Protection must be made. The guidance goes on to state: “For the avoidance of doubt this specifically includes the withdrawal or withholding of clinically assisted nutrition and hydration” (para. 9). It presumably is also intended to apply to disagreements about the continuation of CANH (although that is not made explicit).
Where a court application is necessary the importance of bringing such proceedings in a timely manner is underlined by Mr Justice Hayden. Decision makers are advised “to consider whether steps can be taken to resolve the relevant issues without the need for proceedings” (para. 14(a)) and to recognise that “delay will invariably be inimical to P’s welfare” (para. 14(b). They should make an application to the court in a timely manner if necessary.
How the recent legal and professional guidance has helped
Our research and other work in this area confirms that the Re Y judgment and the legal and professional guidance that followed have helped in the following key ways:
After Re Y, best interests decisions already robustly conducted in the clinical setting could be enacted without further delay. This was a huge relief for the families involved: as one wife of a PDoC patient said, it felt as if her husband’s best interests were really being put first (see a filmed extract from her interview here).
New discussions were started as families felt more able to speak up about what they thought the patient would have wanted. After the Re Y judgment, we experienced a sudden increase in approaches from family members of patients who had been in PDoC for years or decades. These people were explicit that not having to go to court meant they now finally felt able to challenge ongoing CANH. This included, for example, the family of a woman who had been in a permanent vegetative state for over 33 years.
Clinicians were more likely to initiate discussion of CANH. One healthcare professional, for example, told me she had (prior to 2018) discharged dozens of patients in permanent vegetative states into care homes, without ever raising the question of whether or not CANH was in their best interests. (“They’re the ones’, she said, “that keep me awake at night”.) The change in legal and professional guidance, however, means that she and her colleagues now routinely discuss CANH as a best interests decision in relation to all new patients now coming through their centre: “The Y case changed our whole approach. Being able to come to a clinical and family consensus without going to court seems ‘do-able, whereas before the idea of going to court was stressful.” [Allied Healthcare Professional, specialist rehab centre]
Guidance about the best interests decision-making process helped healthcare professionals at a very practical level. The detail of the BMA/RCP guidance on CANH (combined with the RCP guidance around PDoC) is seen as invaluable. The comprehensive quality of information, combined with user-friendly formats (boxes highlighting key legal points, flowcharts and checklists) have helped staff to navigate the whole process of talking with families and obtaining the right clinical information and second opinions “I would literally carry the guidelines in my hand to all key meetings with loads of post-it notes.” [Clinical Lead, specialist long term care centre]
Specific parts of the guidance also help with documentation and auditing. The BMA/RCP proforma for documenting decisions about CANH was highlighted as particularly valuable because:
“Not only does it guide you through the process and make sure you’ve thought about everything butit answers my Trust’s question: how do we know when we’ve done this correctly?’ We send the proforma to the Trust Governance Department who then assess whether the process has been done with all due diligence, and decisions can be audited. [This also means that] if it needs to go to court, all the information is there about the process that’s been followed and it highlights any areas of disagreement that the court needs to address.” [Consultant in a specialist PDoC assessment unit]
The new legal and professional guidance means thatmany cases are now resolved in discussion between clinicians and patients’ families without the need for court. This is happening both in centres where robust best interests processes were already established, and in centres where this is developing as a new skill set (since previously they had provided CANH by default).
Healthcare professionals engaging with the guidance say that, even if they were hesitant at first, they are gaining confidence with experience and feel very positive about improvements in patient-centred care and in increased reflective practice across the entire multi-disciplinary team.
Patients’ best interests seem well-served, insofar as the documentation we’ve seen suggests that decision-making where withdrawal of CANH is considered is detailed and thorough. The process followed meets, or sometimes exceeds, what a court might have required. For example, formal diagnostic evaluation designed to detect even minimal consciousness (a “SMART”) was commissioned for a woman who’d been in PVS for over three decades – something which might not have been considered necessary by a court given the length of time since her original injury, the lack of responses observed by family and staff, and the fact that, according to testimonies from her family, some minimal consciousness would make no difference to what she would have wanted – indeed if she were minimally conscious this would be worse for her.
By contrast, we note that some documentation we’ve seen about decisions to continue CANH shows that these decisions are often not robust and display a lack of awareness of the BMA/RCP guidance, or even the Mental Capacity Act 2005. We have seen records of so-called ‘best interests’ decisions to fit feeding tubes, or to continue with CANH, which indicate that treatment is in the patient’s best interests simply on the grounds (for example) that: “Patient cannot swallow” or “Wife consents”.
Alongside the need to monitor the impact of the new guidance, we therefore want to underline the importance of a register for PDoC patients and proper audit of their care and of best interests decision-making (in relation both to discontinuing and to continuing life-sustaining treatment).
Difficulties with, and resistance to, following the guidance
Compliance with the relevant legal and professional guidance is neither uniform nor comprehensive and the issue of treating patients by default continues to be a problem.
Healthcare professionals seeking to follow the guidance sometimes describe challenges such as lack of training or resources to permit proper best interests reviews of CANH, so the ‘easiest’ thing to do is not to address the issue at all.
They may also be discouraged by a lack of clear commitment from their organisation, or even an implicit sense that there is somehow a contradiction between a professional commitment to rehabilitation, on the one hand, and a commitment to best interests, on the other.
Others find their own sense of identity threatened or they worry that even raising a question about CANH might undermine their relationships with families.
One consultant, just starting a conversation with a family about whether providing CANH to their relative was appropriate any more, described how difficult this was for her in the following terms: “It’s hard to be gamekeeper turned poacher. I feel an internal dichotomy, even though my guiding light is to do the right thing by the individual“.
It can be tempting to wait for the family to raise the issue, or to let years go by in the hope that, eventually, everyone will be “on the same page”, or even that the patient will have moved on to a different setting, so the problem can be passed on to someone else.
Some healthcare professionals have told me that they explicitly limit their compliance with the professional guidance. For example, they won’t raise CANH as a best interests decision until at least two years after injury, or simply can’t bring themselves to discuss the issue with any family whose relative has been maintained in PDoC for an extensive period.
There is also an uneven spread of skills in decision-making. Some GPs, for example, feel that they have neither the time nor the skill to do anything other than continue to prescribe CANH for all patients in the care homes they serve.
Most importantly, perhaps, there seems to be a huge level of inertia built into the system. Years of delay sometimes occur because:
No particular healthcare professional feels responsiblefor decisions to (dis)continue CANH
Assessing best interests re ongoing CANH is not seen as urgent so little priority is given to setting up the necessary meetings and second opinion
The legal presumption in favour of life is interpreted as if this presumption can be used to treat indefinitely, regardless of clear evidence that a patient would not want CANH in their current circumstances
and/or
the decision to continue with CANH is seen as “not making a decision” at all. And the act of continuing (e.g. to sign off on repeat prescriptions of formula or routine replacement of old or damaged feeding tubes) is seen as “no action”. This allows some individuals to position themselves as simply “not getting involved” when in fact they are actively involved in continuing CANH.
The way in which continuing CANH is conceptualised is a key problem, with some clinicians or managers not getting to grips with the vital principle that “the fundamental question is whether it is lawful to give the treatment, not whether it is lawful to withhold it” (Para 20 Aintree https://www.supremecourt.uk/cases/docs/uksc-2013-0134-judgment.pdf)
Outright opposition to the guidance also exists in some quarters. This includes:
institutional or management opposition. For example, I was informed by one senior figure that he routinely removes ceilings of treatment for all patients coming into his unit because “we’re a rehab centre not a knacker’s yard”. In such circumstances, individual healthcare professionals can find it very difficult to follow professional guidance. A GP trying to discuss CANH as a best interests decision was “aggressively challenged” by the care home manager. Other healthcare professionals ran into difficulties with managers who were “hostile” or concerned about a perceived “reputational risk” to the organisation. Another healthcare professional told me the religious ethos of his organisation means he has had to be cautious and strategic in bringing the organisation into line with the guidance, although he has now succeeded and is extremely passionate about how genuine religious compassion was being shown to patients in ways that now fully comply with legal and professional guidance.
resistance from some senior clinicians. Some allied healthcare professionals who’ve trained with us subsequently report that there is a limit to what they can actually do with their new knowledge of the legal and professional guidance because they are working with consultants who are implacably opposed to CANH-withdrawal. We’ve some direct experienced of this ourselves when we’ve been in meetings where doctors have informed families that withdrawing CANH is equivalent to euthanasia, is bound to lead to a painful death, and/or that they don’t agree with the law and have no intention of following it. Many evoke a medico-ethical position they see as being ‘above’ the law, or a personal morality which means they feel compelled to resist professional guidance.
For any of these reasons, and sometimes a combination of several, patients’ best interests can be ignored, and therefore overridden. This means that families desperate to end what they’ve come to see as a violation of their relative’s dignity are routinely faced with excruciating delays and feel compelled to “lobby” for withdrawal, leaving them feeling implicated in the death of their loved one. Our interviews display this vividly, e.g. here, where one person describes the difficulty of getting healthcare professionals to take responsibility for decisions, and here and here where another describes her experiences and says she wishes the possibility of withdrawing CANH had been raised proactively much earlier.
A case study outside the courts
Although there have been many positive changes, we are still encountering cases of lengthy delay inimical to patient welfare. Many of these cases never come before a judge – and, indeed, we do our best to support robust and timely resolution without involving the courts. What cases we’ve worked on demonstrate is continuing failures in best interests decision-making on the ground. For example, we were asked to help support decision-making for Chris, a man in his 40s, whose wife struggled to get those caring for him to consider his best interests in relation to CANH over several years: her experience is outlined in the case study box below.
So, what can be done to improve best interests decision-making about CANH?
There have clearly been huge improvements, and there is equally clearly still a huge amount to be done to roll out good practice and to ensure that all PDoC patients receive high-quality, patient-centered care, compliant with legal and professional guidance.
We’ve outlined many recommendations in earlier publications, but here I want to highlight the importance of the professional guidance and of the BMA/RCP proforma – use of which supports detailed and proportionate documentation of decisions. It is also important that no one is simply ‘warehoused’ indefinitely in a care home, without access to specialist input: this is most likely to happen to patients judged to have ‘no rehab potential’ – the very patients who perhaps most need specialist input in relation to best interests review. There may also be a role for the Care Quality Commission to inspect levels of compliance with best interests guidance. Reluctantly, we’ve come to the view that some referrals to the General Medical Council may be the only way of getting some actively-resistant doctors to take note of their obligations.
The Court of Protection only ever sees a minority of cases where best interests decisions need to be made. But the court plays a crucial role in exploring, defining and setting standards for best interests decision-making beyond the courtroom – in the clinic and in the community. Alongside challenging delays in bringing cases to court, the Court of Protection can make it crystal clear via its judgments and judicial guidance that:
continuing CANH (as well as withdrawing it) is a decision and constitutes ‘action’
best interests assessments need to be undertaken in order to justify continuing CANH as much as to justify withdrawing it.
all such decisions and actions must be robustly evaluated and documented in the best interests of the patient.
In training healthcare professionals, we’ve found that words matter – and that this reorientation towards thinking about justification for giving treatment (as well as for withholding or withdrawing it) can be revelatory, thought-provoking and mobilise a different approach to the issue.
The Court of Protection is also uniquely positioned to promote stakeholder engagement with recent legal and professional guidance. The court can take the opportunity of underlining (a) that CCGs who commission treatment, including CANH, must show that it is in the best interests of the person concerned; and (b) that no organisation (whether a private hospital, NHS rehabilitation centre, or charity-run care home) can simply ‘opt out’ of the relevant legal and professional guidance. The BMA/RCP Guidance puts it like this (p.33)
Finally, it needs to be emphasised that individual healthcare professionals cannot simply ‘follow their conscience’ where that means imposing their values on vulnerable patients. Doctors may not offer a treatment because they don’t consider it clinically appropriate – but they should not, simply based on their own values, either deny the patient an available treatment they would have wanted, or impose a treatment he or she would have wished to refuse. Approaching each patient as an individual is core to good practice.
Given the persistence of poor practice, and active resistance from some quarters, the court could also make clear that continued provision of medical treatment when it is not in someone’s best interests is an assault, and that clinicians will not be able to rely on the defence in s.5 of the Mental Capacity Act 2005 – meaning that there is a risk to them and to their organisations of claims for damages.
During the afternoon of Tuesday 25th May 2021, I found myself back in the (virtual) Court of Protection for what was my first observation for several months.
I was expecting to observe the latest hearing in Case Number COP 1275114 Re RD (Emma Heron and Olwen Cockell had written about an earlier hearing in this case here) but was surprised to find myself observing a very different hearing. The case of the man engaged in a hunger strike over his dispute with the Home Office as to the date of birth on his official documentation (reported by Celia Kitzinger and several others here) was back before Mr Justice Hayden. There was no explanation for the departure from the listings, but the facts of the case led me to assume (as was later confirmed in correspondence with one of the barristers involved in the proceedings) that the matter arising in the case was of an urgent nature.
So, having logged onto MS Teams via the link I had been emailed that morning (7 minutes after sending my request to observe), I found myself adjusting my expectations rapidly and working out what was happening. It probably helped that the case had been covered on this blog before, and that its facts are particularly distinctive, so I deduced relatively quickly from the introduction of the parties provided by counsel for the applicant, and the introductory summary provided by Mr Justice Hayden (particularly valuable in this instance) that I was about to observe a further hearing concerning an asylum seeker (now with indefinite leave to remain in the UK) who suffered considerable trauma prior to arriving in the UK, is engaged in an ongoing dispute with the Home Office, and is on hunger strike in response to this dispute. (You can read a summary of the original case concerning that came before the Court of Protection last July, and find a link to the published judgment resulting from those proceedings here).
Introduction to Proceedings
The hearing began with a summary of the case before the court. Counsel for the (applicant) Local Authority (Alison Harvey of No. 5 Chambers) explained that P was represented by Arianna Kelly of 39 Essex Chambers; the Clinical Commissioning Group (CCG) was represented by Benjamin Tankel, also of 39 Essex Chambers; and the NHS Trust was represented by Caroline Hallissey, of Serjeant’s Inn Chambers. There was also a Litigant in Person present in court – P’s ‘mum’ (during his time in the UK, he has lived with a married couple he now calls ‘mum’ and ‘dad’). The decision facing the court (a best interests decision – described by Mr Justice Hayden as being “deep in the welfare stage” of Court of Protection proceedings) was concerned with P’s residence and care. Having stopped counsel from progressing to the matter before the court, the judge announced that he would “like the case opened in context – for the public” according to the “guidance”. This was especially helpful to me as I adjusted my expectations in light of the departure from the published Cause List. Mr Justice Hayden then went on to take over from the barrister and outline the facts of the case himself – apologising to Ms Harvey for doing so but stating that he “had the facts at [his] fingertips”.
Mr Justice Hayden explained that the case before the court concerned a man who is “fixated” on the refusal of the Home Office to acknowledge that he is the age he says he is. He briefly set out the facts as I have outlined them above – emphasising that P’s “fixation” was an “unbalanced factor” in his reasoning. P places great weight on his correct date of birth as key to his entire identity. Mr Justice Hayden pointed out that the acknowledgement of P’s age claim would set no precedent and would place no financial burden on the State (in fact it is likely to reduce such a burden because it would delay his entitlement to a state pension). As P’s dispute has made its way through the court system (an application to appeal is currently before the Supreme Court), WA has been consistently refusing food and fluids and is now in “parlous circumstances”. His ‘parents’, understandably, are “visibly exhausted and emotionally drained – how much they have left to give I don’t know, how much it is reasonable to expect them to give, I don’t know”.
The judge continued, explaining that the reason the case is before the court at this time is that WA was recently admitted to hospital after what transpired to be a second suicide attempt – described by the judge as “a cry for help” rather than a “serious attempt”. He had required intravenous fluids to address clinical dehydration but was now assessed as medically fit for discharge. He remained in hospital although there was no clinical need for this, as it seemed he did not feel ‘safe’ to leave – the hospital had supported him to stay in acknowledgement of his desperate situation and the acute need of his parents for respite, but this was no longer appropriate as he did not need the bed he was occupying. It seemed that two options were to be considered:
WA to return to his parents with a “reinvigorated” package of support.
WA to move to his own flat with 24-hour support.
Counsel for the Local Authority began to explain that her client will put in a package of care at home and started to speak to P’s views but was quickly stopped by the judge who redirected the discussion back to best interests. Counsel then set out the LA’s position that a move home with a package of care is in P’s best interests but there are concerns about how his parents will cope. Again, Mr Justice Hayden interjected, stating that he wished for a “proper, rigorous consideration of best interests”.
The positions of the parties were then outlined: P’s barrister explained how P does not feel safe to go home. It was pointed out, importantly, that while P has been deemed to lack the capacity to make decisions regarding his intake of nutrition and hydration, he has litigation capacity and therefore instructs his counsel (rather than being represented by the Official Solicitor). No capacity assessment has been undertaken regarding decisions concerning his residence. A seemingly “intractable” situation therefore seemed to have arisen in which P was not prepared to agree to discharge from hospital but, as Mr Justice Hayden pointed out – “That’s not an option. I can’t order the hospital not to discharge him”. P’s barrister’s argument that responsibility lay with the hospital to look to its own systems and resources was “not at all attractive” to the judge. The Clinical Commissioning Group (CCG) did not offer a view on P’s best interests, but (like the Local Authority) was ready to do whatever it could to help. P’s parents’ position was outlined on their behalf: they wished to have P back in their care but were respectful of his wishes.
There was a period of discussion during which it seemed that no consensus could be reached concerning P’s best interests. Mr Justice Hayden appeared rather brusque with Ms Harvey (counsel for the Local Authority), as she attempted to explain the Local Authority’s position. Ms Harvey explained that the Local Authority had a “backup” plan of a flat for P (with a support plan in place), but this seemed an unacceptable position to the judge, who maintained that her client must “engage with the facts, not as you would like them to be”. From my perspective, it actually seemed refreshing to see a public body attempting to “be ready with something in our back pocket”.
It turned out that the difficulty with P going home was that he would not be able to have intravenous fluids ‘in the community’ as these could only safely be administered in hospital. This was apparently set out in documents stating the Trust’s position and an attached email from one of P’s treating clinicians. Mr Justice Hayden explained that he had not seen the information and the court was “besieged by documents”. Ms Harvey also said that the Local Authority had only found out on the morning of the hearing about the issue with accessing treatment in the community and this was the reason for their lack of prepared response – this in spite of the fact that the previous Order had been designed to get this information. From my observations of other court proceedings, I note that it is often the case in proceedings before the Court of Protection that work ordered by way of case management seems to be done at the last minute before a case comes back before the court; but given the rather urgent nature of the matter in this case, it could simply be that the lack of preparedness I observed was indicative of the pace of proceedings. In any case, the judge went off-screen so he could read the documents that were going to be resent by Ms Harvey while Ms Hallissey (counsel for the Trust) contacted the doctor to give evidence.
A clinician gives evidence
The doctor joined the call and was sworn in by the court associate. He told the court that he was responsible for P during his current admission and that he had previously been involved in his treatment during the last year too. He explained that P had experienced no “serious” consequences as a result of his overdose: when he arrived at hospital his salt levels and kidney function were normal, and he had been assessed by mental health colleagues as being a “low risk” for further suicide attempts. There was therefore no need for P to be admitted, but he said that he did not want to go home. Given the nature of his situation, it was agreed that he should stay in hospital for 48-72 hours to give his parents some “much-needed respite”. He was monitored on a general internal medicine ward with daily blood tests and the day before the hearing had experienced dehydration and ketoacidosis – a response to starvation where the body begins to break down fats rather than proteins and carbohydrates in the diet. He was given fluids, and intravenous glucose to reverse the starvation response and as of lunchtime on the day of the hearing was clinically fit for discharge from hospital.
Counsel for the Trust (Ms Hallissey) asked the doctor “Could you explain how IV fluids are given, and can they be given in the community?”. He explained that they are a prescription medication with specific uses and risks – a particular risk being ‘volume overload’ where liquid in the system causes too much blood to overwhelm the heart. This can cause death.
Asked by the judge whether, “If a patient has recently been ketotic are they more vulnerable to cardio problems if there were to be volume overload?” the doctor explained that while this was not directly the case, the answer was “obliquely yes”. However, as P was rehydrated, he was no longer ketotic. Mr Justice Hayden then asked whether P’s “maladaptive relationship with food” may have led to consequent vulnerability of his heart; to which the clinician explained that as P may have undergone physiological adaptation to living with mild sub-clinical dehydration there was a possibility that he may be more vulnerable to volume overload. So, as summarised by the judge – “it’s certainly not going to help”.
The question was then revisited as to whether fluids could be prescribed to P in the community either at home (with his parents) or in a flat. The doctor’s response was that he could not imagine a situation where this would be possible in the community – because of the need for close monitoring of the speed and consistency of fluid delivery and ability to respond to changes that can sometimes be serious (e.g., the possibility of hyperkalaemia: elevated potassium levels that can lead to sudden death). It is for these reasons that national guidelines for the treatment of acute kidney injury indicate that intravenous fluids should be administered in hospital.
Conversation between Mr Justice Hayden and the doctor then became rather difficult to follow, as the judge began to ask about IV pain relief. It transpired that this was because he was conflating IV fluids and pain relief, and this turned out to be key to the direction the case then took. The doctor explained that there was limited (though not uncontroversial) evidence of the efficacy of sub-cutaneous and IV fluids in the community in palliative contexts – as distinct from symptomatic treatment and the preservation of life in medical emergencies. It seemed that the distinction arose from the different balance of risks and benefits in situations where the objective of prescribing IV fluids in the community is to control pain at the end of life, compared with managing acute dehydration in a person not at end of life. Discussion between judge and doctor did not seem to produce progress, and Mr Justice Hayden characterised the situation as an “acutely complex moral and ethical dilemma” as P was simultaneously not eating but accepting IV fluids in a “hunger strike that isn’t a hunger strike”. Judge and doctor agreed that, in their view, the situation is “unprecedented”.
Mr Justice Hayden reminded himself and the court that respect for P’s autonomy had been key to the judgment made last year concerning him. He then asked the questions that seemed to me to be the turning point of the decision-making process unfolding in court – “What is he saying to us?” and “What is his objective?”. In a weak, vulnerable, fragile state – probably permanently sub-clinically dehydrated, but accepting intravenous fluids; it seems that P is “riding two horses”, and the judge doesn’t “profess to know what he seeks”. P can also resort to “passive acquiescence” as a result of his history of trauma, meaning he acquiesces to decisions that he does not actually wish. This obviously adds a layer of confusion and lack of certainty in attempting to deduce what P wishes to communicate. Is P seeking palliative relief from pain without taking the decision to drink? Has he, in effect, “put himself on a palliative plan”? The clinician confirmed that this could be the case.
The situation changed dramatically as a result of this exchange. Mr Justice Hayden confirmed that while the primary concern of any clinician is with the preservation of life, this actually refers to “sav[ing] a life that can be saved”, and that the judge himself had determined that P can decide for himself whether his life ‘can be saved’. On this basis, is IV fluid both ethical and consistent with P’s welfare? The doctor confirmed that he could see a role for treatment with IV fluid for the relief of the symptoms of dehydration as distinct from, and recognising that this is not the same as, attempting to cure acute medical illness. This approach would also be likely to avoid the “spiral” situation wherein P became dehydrated while ‘in the community’, needing readmission to hospital for administering of IV fluids, then being discharged when rehydrated only to become dehydrated again while at home leading to further readmissions. As Mr Justice Hayden put it – providing IV fluids on a palliative basis would represent “defeat for those of us who seek him to live but [would] respect his wishes to die”.
Following some further discussion about the possible length of time P may survive with IV fluids but no significant nutrition intake, and the extent to which prescription of intravenous fluids in the community may impact on P’s motivation for nutrition intake (as a side-effect of nutrition intake is rehydration); the judge thanked the doctor for “having been involved in this dialectic, very properly I may say”. He confirmed what I had felt from my observation – that the case now was “a very different situation than the one we opened with”. The position now was that if P were not to take up the “offer” of life-saving treatment, it would in theory be possible for him to access intravenous fluids in the community for palliative purposes. This was indeed a dramatic shift, and the judge’s call for a five-minute recess to “absorb and think” seemed wholly appropriate. I used that time to reflect on my observations from this powerful discussion – as a seemingly “intractable” ethical dilemma was made tractable with an attempt to ascertain what P may be attempting to communicate.
Evidence from P’s mum
Mr Justice Hayden then agreed with P’s barrister (Ms Kelly) that he should proceed by speaking with P’s mum and then with P himself (with the public platform being cleared so the judge would speak with P in private). There were some technical problems with P’s mum joining the platform, so she dialled in by phone. She was sworn in by the court associate and the judge began to speak with her.
They began by establishing that an option that may be possible is that P would come home to his mum and dad with support and receive IV fluids, meaning that he would remain hydrated and with diminished pain. P’s mum confirmed that she had followed this in the doctor’s evidence. Then Mr Justice Hayden began to discuss with P’s mum her views:
Judge: You may want [the proposed plan] for a different reason to [P].
P’s mum: True.
Judge: You might see it as a way of keeping him alive, but he sees it as a way of managing the end of his life.
P’s mum: That’s true.
Judge: [Missed full transcription – reference to “from your perspective” and “risks”]
P’s mum: I would like to take [P] home. My husband and I want to nurse [P] at home as long as possible. We want him to be out of discomfort. It is very distressing seeing him in distress.
Mr Justice Hayden then took a very serious tone with P’s mum. He acknowledged that she “get[s] frustrated and angry” but pointed to the high level of care P was receiving from his clinical team. He referenced the “open-minded” approach of the doctor and described this as “a hallmark of a very good doctor”. He asked, “Do you think P wants to die now?” to which P’s mum responded by asking if she could read a statement she had from P. After ascertaining that this was a brief statement that had not previously been seen by anyone else, the judge allowed her to go ahead, and we heard from P via his mum:
You know when everyone keeps saying ‘Keep going, keep going ‘till the decision on immigration is made’ it’s the only way I can see a little hope.
This statement did not make total sense to me, I think this could be because there are outstanding proceedings in relation to P outside of the Court of Protection, the details of which I have not accessed and were not discussed during this hearing. Discussion between the judge and P’s mum continued with an exploration of the extent to which P may have taken in nutrition while at home. His mum carefully explained in detail how she had supported P to observe Ramadan by breaking his fast with three dates, as well as sometimes giving him instant jelly that she bought for her grandchildren. This exchange characterised the detail in which Mr Justice Hayden often engages when ascertaining facts concerning P and their views, wishes, feelings, and beliefs as he sought to understand how P’s mum had made decisions regarding the types of dates she bought, where from, and the extent to which P had inputted into such decisions; and his enthusiasm (or lack thereof) for choices relating to nutrition. It was also clear to me that P’s mum took pride in her knowledge of P and his views – as she explained that “over the years I’ve helped [him] practise Ramadan…” she had “become accustomed” to his preferences so that she “buy[s] the things he likes”, as over the period of 12 years “I’ve got to know what he likes”.
At 16.09 the court was cleared in order that Mr Justice Hayden could speak to P (from his hospital bed) in private. This meant everyone was required to vacate the online platform and would be notified when the hearing was to recommence. I received this notification by email from court staff at 16.33 and logged onto MS Teams as the hearing recommenced.
Mr Justice Hayden welcomed the parties back, addressing Ms Harvey (counsel for the applicant Local Authority): “We’ve moved towards a consensus that merits a reflection and revisiting of the care plan”. There was a brief discussion – prompted by Ms Hallisey (counsel for the Trust) as to the practicalities of arranging IV fluids in the community, but the judge declined to be drawn into the details of care planning; stating instead that a day was required for the parties to look at the proposal and make a plan, and at that point if they wish to restore the application “I will do my level best to make myself available”. As to the question of where P was to go in the interim, Mr Justice Hayden was adamant that “he’s not going anywhere” – encouraging the parties to meet and reflecting that while the case “seemed intractable at 2 o’clock” there is now support for a way forward, and “it’s a question of how, not if, that needs to be clear”. As an observer, I sensed a tension between the perspective of the judge (seemingly oriented towards what one might describe as the ‘headline’ outcome of the proceedings) and the parties (who, understandably, seemed largely concerned with the practicalities and logistics of how the proposed outcome may be realised within the constraints of their respective legal and policy obligations). I did not, however, see this tension explicated or resolved during the proceedings.
The hearing concluded with a brief coda prompted by a question raised by Benjamin Tankel (counsel for the CCG) as to whether, given the determination that P had elected to put himself on a palliative care pathway, he should have a DNAR (a “Do Not Resuscitate” order) in place, as this appeared to be “implicit in the direction” and would “make sense and be consistent” with the reasoning behind it. Mr Justice Hayden, however, expressed his surprise at being asked to deal with this new issue at such a late stage in the proceedings. He expressed doubt that the case was yet at the point where a DNAR order would be appropriate – suggesting this may be “something for the future, but not now”. After discussing again with the clinician who had given evidence earlier the treatment pathway agreed for P, and reviewing the data concerning outcomes of resuscitation out of, and in hospital, the judge indicated that he wished to discuss the question of a DNAR order with P himself, and that he would meet with him tomorrow – virtually (asking that the hospital facilitate this with provision of an iPad or similar), and at a time convenient to P. He was “not going to take a decision on the DNAR until I have heard what [P] has to say”, describing P as “an articulate and engaging young man despite lacking capacity” (the disabled activist in me noted that these are not necessarily mutually exclusive characteristics). The judge wanted to hear “his authentic voice” and emphasised the importance of autonomy for a person who is “incapacitous on the central issue” – remarking that “Incapacitous people have a right to autonomy, just as capacitous people do”. Mr Justice Hayden was “simply not prepared” to make a decision without hearing from P.
As the hearing moved towards a close, and the parties once again demonstrated their concern with the practicalities and logistical issues arising from the decision of the court – with Ms Harvey (counsel for the applicant Local Authority) asking about the impact of the decision on the timeline set out in the original draft order, Mr Justice Hayden indicated that he was “not going to descend to that level of detail…manifestly there have to be timescales but I am not going to be prescriptive”. Again, I noted a sense of competing priorities. I also observed something of the approach Mr Justice Hayden had taken to his engagement with P – as the judge remarked that “I’m trying to empower him to make these sorts of active decisions”. The judge was clearly keen to emphasise that P’s lack of capacity in certain specific domains did not mean he should be deprived of self-determination, and that he should be encouraged to engage in such active decision-making. It was shortly after this, with some brief exchanges regarding discharge and future treatment planning; and the logistics of putting the “consensus” reached into practice in the coming days, that the hearing came to a conclusion.
Personal Reflections
Unsurprisingly, given the gravity of what is at stake at the heart of this case, I was left with much to consider having observed this hearing. As an advocate and disabled activist, I was pleased to observe the ways in which Mr Justice Hayden facilitated P’s participation in the hearing, and the centrality of P’s “voice” throughout the proceedings. As an academic lawyer I noted the playing out in practice of jurisprudential tensions between “public” socio-political, and “private” individual concerns in the operation of law and its social implications. But – by far most overwhelmingly – as a human being, I can only send P my every good wish and kind thought. I hope beyond hope that the seemingly intractable dispute between him and the Home Office concerning his date of birth may somehow be resolved, and that he might feel able to end his hunger strike. And I hope that he is able to access treatment to manage his physical, mental, and emotional pain and discomfort. But, more fundamentally, I hope above all that he is able to find peace.
Gill Loomes-Quinn is a disability rights scholar-activist. She is founding co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project. She tweets @GillLoomesQuinn
Image taken from ‘The Art of Speaking Your Mind’: Screen print on canvas by Gill Loomes-Quinn
Over the course of three days last week, I observed a hearing (COP 13418695) before Mr Justice Hayden concerning the proposed medical treatment of a man in his thirties (‘M’) who lacks capacity to make his own medical decisions because of a constellation of complex needs including autism and a learning disability. M also has physical challenges: he has dysarthria and uses a light writer to help him communicate; he is registered blind; and he uses a wheelchair. M lives at home with his father, with other family members also closely involved in his life and care. During the hearing his family relationships, and the trust he has in his close relatives, were described as the ‘pillar on which his life is structured’.
M has a complex medical history and it was strongly suspected that he suffers from ‘Post Intensive Care Syndrome’, a particularly distressing form of Post-Traumatic Stress Disorder that can affect those who have been treated in the ICU (as M has been previously). M is strongly resistant to, and very distressed by, any attempted medical examination or intervention, however minor. He has refused to allow his teeth to be examined for four years, and is now in pain with broken and bleeding teeth, and restricted to a very limited soft diet.
This hearing arose because a hospital trust (represented by Emma Sutton) has applied for welfare orders under the Mental Capacity Act 2005 to permit them (i) to perform a full dental clearance on M in hospital under general anaesthetic, and (ii) to use a combination of chemical and physical restraint in order to manage M’s transfer to hospital. What was proposed was the covert administration of 10mg diazepam in M’s soft drink, and if necessary (the Trust hoped it wouldn’t be) the use of blankets, pillows, and possibly ‘soft holds’ to restrain M physically and enable the 30 minute journey from home to hospital.
A declaration had been made at a previous hearing (before Mr Justice Williams on 27th May 2021) in accordance with s.15 of the Mental Capacity Act 2005 that M lacked capacity to decide whether or not to undergo the proposed treatment. Thus, the issue before the court was primarily whether or not the proposed clinical treatment was in M’s best interests.
The other parties were M (represented by his litigation friend, Michael Horne QC, for the Official Solicitor), the City Council and Clinical Commissioning Group (represented by Natalie Levine) and M’s sister, Dr O, who is herself a doctor and was a litigant in person. All parties accepted that dental clearance was clinically necessary and in P’s best interests, and agreed that he would not submit to it without restraint. The issue was what kind of clinical restraint should be used.
Although I have observed many other court processes, both in person and ‘live streamed’, this was the first time I’ve observed a hearing in the Court of Protection, and the first time I’ve observed a fully remote hearing. Following instructions provided by Professor Celia Kitzinger of the Open Justice Court of Protection Project, I requested and received a link which allowed me to join the hearing via Microsoft Teams; thus, I found myself logging on at 10.30 am on the first day with little idea of what to expect.
The hearing
The first thing that struck me was that the virtual format did not result in any lack of formality. Mr Justice Hayden was physically located in the Royal Courts of Justice, and it was emphasised to all present that ‘this is still very much a court’. Everyone was reminded of the usual restrictions on reporting and recording, and the usual procedural formalities were observed, with the court being told to ‘rise’ when the judge arrived: and a witness who referred to a barrister by her first name was gently reminded to use title and surname instead. Although the judge was always courteous and often warm (of which more later), his authority was very clear at all times. The virtual nature of the hearing made it easier to observe than a live stream of an in-person (or hybrid) hearing, in that the faces and expressions of participants were clearly visible and their words clearly audible to everyone on the platform.
Also noteworthy was that, although Hayden J had been presented with welfare orders for his approval, and there was broad agreement between the parties, the judge had insisted on a full hearing because he felt he could not do the matter justice as a ‘paper exercise’. He was particularly concerned about the plan for restraining M (he indicated that he would be generally unlikely to approve a restraint order without a hearing), and about the fact that everything that was being planned – the restraint, and the subsequent treatment – would be done covertly (because it would be impossible to implement the plan if M knew about it). The court heard evidence from M’s sister, Dr O, that M (who she described as ‘my favourite person’) was ‘someone who thinks, someone who knows how he feels, and someone who has strong views’. The transfer to hospital, she said, was highly likely to require physical restraint if only diazepam was used. This, she said would be ‘hugely distressing’ for M, and presumably also for the family members who would have to assist in it.
These factors clearly weighed very heavily with Hayden J during the three days of the hearing. He asked early on why the balance in the plan was in favour of physical rather than chemical restraint, and, clearly not satisfied that this was justified, conducted a thorough investigation of the options. A major concern was the sense M might have of having been ‘betrayed’ by those he loves most and ‘who have contrived to bring this about against his will and without his knowledge’. There was clear potential for serious damage to the key relationships of trust that are fundamental to M’s happiness and sense of self. Hayden J summarised the best interests assessment in this case as a matter of balancing a small risk of something very serious (the risks associated with deeper sedation, including aspiration pneumonia and a return to ICU) against a bigger risk of other kinds of harm (physical restraint, distress, and erosion of trust).
With Hayden J having made clear his uneasiness about approving an order that allowed for a high degree of physical restraint, Day 2 centred on discussion of what form of chemical restraint was in M’s best interests. The Trust’s plan envisaged the use of diazepam in combination with physical modes of restraint. Although they recognised that Dr O (his sister) had an alternative view, the Trust’s position was that it could be considered ‘micromanaging’ for the court to become involved with the type of chemical restraint required, and that – in any event – a doctor cannot be forced by the court to prescribe something that is not considered clinically indicated/appropriate. The Official Solicitor accepted that midazolam was not an ‘available option’. This issue – the type of chemical restraint to be used in the community – was the only difference between the parties.
Hayden J was ‘extremely anxious’ that M may need significant physical restraint, and feel betrayed by the involvement of those he loves most in a very distressing experience. He was keen to explore the possibility of using midazolam, having heard during Day 1 that M had tolerated it without difficulty on numerous occasions in the past. The particular attraction of midazolam was that it has a ‘retrograde amnesiac effect’ such that M would be less likely to remember being transferred to hospital, or the role of his close family members in that process, thus preserving his trust in them. Hayden J saw the retrograde amnesiac effect of midazolam as a ‘very significant welfare advantage’, so was keen to hear further expert evidence on whether it would be medically safe for M.
It emerged that midazolam had only ever been administered to M in hospital settings, not in the community (as would be the case here). Because midazolam provides deeper sedation that might suppress M’s breathing, the Trust did not, at this stage, consider its use to be in M’s best interests. The Official Solicitor considered that, on balance, midazolam was in M’s best interests if (and only if) safe transfer to hospital was available (i.e. transfer by ambulance with paramedics trained to monitor M in transit). At this stage, we were told (i) that such transfer was not available, and (ii) that the GP was unwilling to prescribe midazolam to be administered in the community.
A crucial moment in the hearing came during Day 2 when several experts had been giving evidence on the respective effects of diazepam and midazolam. The evidence seemed speculative and possibly contradictory, and it was unclear whether a higher dose of diazepam – which could be administered safely in M’s home – might also achieve the desired retrograde amnesiac effect, negating the need to consider midazolam. Hayden J cut through this uncertainty and lack of clarity by posing a carefully-calibrated question to the consultant psychiatrist, asking: “If you wanted to achieve a retrograde amnesiac effect, which medicine would you use?” The answer was clear: midazolam. This allowed the focus of the enquiry to shift to how the risks of administering midazolam in the community could be mitigated. This brief but watershed moment impressed on me the transformative benefit of a judge who is clear-sighted in the face of unclear expert evidence, and able to formulate the right question at the right time.
When the hearing began again on Day 3, we learned that the Trust had changed its position, and now agreed that midazolam was in M’s best interests. The rationale for the change was that the Trust, while regarding the question of best interests as ‘finely balanced’, now recognised the need to ‘protect key relationships of trust’, and that the issue of M’s trust in his family was ‘absolutely paramount’. The Clinical Commissioning Group had sourced ambulance transport with trained paramedics, and the GP was content to prescribe midazolam to be administered to M at home. Thus, the Trust was now seeking approval for a different plan, in which restraint would be primarily chemical rather than physical, and M would have no memory of the transfer to hospital, leaving his key relationships of trust intact. Hayden J made the order accordingly.
Reflections
Having read many of his judgments, and having heard him speak extra-judicially, I wasn’t surprised to find myself impressed by Hayden J’s judicial skill. He had identified that a hearing was necessary (where someone else might have approved the plans on paper); summarised the heart of the best interests calculation; formulated the question that cut through evidentiary confusion and made the way ahead clear; and made effective use of the technique of ‘hot tubbing’ (the practice of examining witnesses concurrently). He also showed professional consideration in making his thinking clear to the parties throughout the process, reflecting that, during his own time at the bar, he had preferred it when judges let counsel in on their thinking, rather than surprising them with their conclusions at the end of the process.
I also found myself very struck by the compassion Hayden J brought to proceedings over the three days. This was apparent in the meticulous care he took to determine M’s best interests and ensure that they were met, and also in the supportive atmosphere he created for all of those involved in the hearing. He went out of his way to be gracious to the expert witnesses, thanking them for their time, and asking them to convey his apologies to their patients because the time taken to give evidence had taken them away from their clinical practice. He ensured that everyone had ample time to take a lunch break, and that counsel had adequate time between sessions to consult with their witnesses and anyone else they may need to confer with, and to prepare any new or amended submissions following those enquiries. He commended parties when they changed their positions, saying that this was ‘a mark of strength and not a mark of weakness,’ and he modelled humility when he noted that ‘we’ve all got something to learn from this [process]’.
Perhaps the most heartening moment of all was when Hayden J ended the final day of the hearing by asking to be updated on ‘how it all goes’. I came away from the experience reassured that, when led by a judge who clearly caresabout the people whose interests he is charged with protecting, Court of Protection proceedings can work very well.
Mary Nealis Reader in Law at the University of Strathclyde. She tweets @maryfordneal
By Charlotte Roscoe and Celia Kitzinger, 9th July 2021
Editorial Note: This blog post concerns a case in the Supreme Court. The Open Justice Court of Protection Project normally covers only cases in the Court of Protection. We have made an exception in this case (as we have before, for cases in the Court of Appeal, e.g. here) because it originated in the Court of Protection and will impact upon future judgments in the Court of Protection.
The image is taken from the website for the Supreme Court hearing listed for 15th July 2021, before Lord Briggs, Lady Arden, Lord Burrows, Lord Stephens and Lady Rose. (There are biographies of the judges here.)
The question before the court is whether an inability to understand that a sexual partner must give consent means that a person lacks capacity to engage in sexual relations.
In the Court of Protection, on 17th September 2019, Mrs Justice Roberts ruled that JB does have capacity to consent to sexual relations, and did not consider that understanding the need for consent from the other person was a necessary part of capacity.
On 11th June 2020, the Court of Appeal overturned that judgment.
The case is now before the Supreme Court.
This blog post is intended as a briefing note for members of the public interested in learning more about this case and perhaps observing it for themselves.
The Supreme Court
The Supreme Court is the final court of appeal in the UK for civil cases (and for criminal cases from England, Wales and Northern Ireland).
Permission can be given to appeal against a decision in lower courts, including the Court of Protection (normally after a hearing in the Court of Appeal) if there is “a real prospect of success” in arguing that the earlier decision was “incorrect, or suffered from a serious procedural error or irregularity” or “some other compelling reason why the appeal should be heard” (Civil Procedure Rules 1998).
Currently, the building remains closed to the public due to the pandemic. Parties to this case will be admitted to the physical courtroom where the hearing will take place. It will be live-streamed and available as a recording to watch afterwards (as are many hearings in the Supreme Court). To observe it you will need to go to the “Watch Supreme Court Live” page on the Supreme Courts website. The hearing is listed for a full day – probably starting at 10am or 10.30am and running until 4.30pm (with a lunch break 1-2pm).
Background
As a consequence of his autism and impaired cognition and related problems, JB has lived in a supported living placement for the last 7 years. He has a comprehensive care package in place which restricts his ability to live independently. Under his care plan, he is supported 1:1 in the community, particularly when in the company of women, and has further restrictions on his contact with others and his access to social media and the internet. These restrictions have been imposed predominantly due to his tendency to behave inappropriately towards women.
JB’s main desire for many years has been to have a girlfriend with whom he can develop a relationship and engage in sexual relations. In order to achieve this aspiration, he wishes to have time in the community without his 1:1 support, to have freedom to go on dates and also to have unsupervised access to the internet. However, because of his behaviour, which has reportedly included JB becoming fixated on particular women, contacting them via messages and making inappropriate and sexualised advances, JB has been prohibited from taking part in this range of activities. It should be noted that JB has not been convicted of any criminal offences, although an allegation of assault was made but not pursued by the police. There is, however, a concern that his behaviours may result in a criminal conviction if left unrestricted.
One clinical psychologist reported that JB was at moderate risk of sexual offending by “sexually touching … without consent”. She said that “in terms of vulnerable women who do not have the capacity to consent to sexual relations, there is a risk of [JB] not recognising or respecting this fact, resulting in the potential for rape to occur.” Another clinical psychologist (quoted in the Court of Appeal judgment at para. 14 here), said that JB understands the mechanics of sexual acts and the risks of pregnancy and sexually-transmitted disease, but his “understanding of consent is lacking“. When asked, JB defined consent as “one party allowing the other party to have sex without the other party complaining“. The judgment reports what JB said when asked about withdrawing consent:
Capacity to consent to sex is something the Court of Protection has ruled on many times before. The Open Justice Court of Protection Project has blogged about some previous cases. These include one concerning a woman with dementia who formed a romantic relationship with a man in the care home she resided in. She was found by a court-appointed expert first not to have capacity to consent to or engage in sexual relations (here) but then subsequently, by a new expert, to have that capacity (here).
Under s.3 Mental Capacity Act 2005 a person lacks capacity if, because of an impairment or disorder in the functioning of their mind or brain, they are unable to (a) understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicatetheir decision.
In the case of B v A Local Authority [2019], Lord Justice Cobb confirmed (just 3 months before Mrs Justice Roberts heard the JB case in the Court of Protection), that the relevant information in relation to capacity to consent to sexual relations includes:
Court of Protection
When the case of JB came before Tier 3 judge, Mrs Justice Roberts, in the Court of Protection, she was asked to consider a single issue: ‘does the information relevant to the decision [to consent to sexual activity] include the fact that the other person engaged in sexual activity must be able to, and does, consent to such activity?’
Mr Vikram Sachdeva, on behalf of the local authority, argued that information relevant to the capacity to consent to sex should include an understanding of the fact that the other party must and does consent to the sexual act, in part because, for those with learning disabilities like JB, understanding this is key to protecting them from committing a criminal offence.
Mr Parishil Patel, on behalf of the Official Solicitor acting for JB, argued that the local authority’s attempt to expand the test for capacity to consent to sexual activity is an attempt to incorporate a requirement that those who pose a risk of sexual offending must have a sufficient understanding of criminal law. Mr Patel stated that the Mental Capacity Act 2005 should not be used to avoid the risk of criminal offending. Mr Patel further argued that adding this element of consent into the “relevant information” raises the bar from a deliberately low level which has been set in order to avoid discrimination against vulnerable adults, who should be entitled to exercise one of the most basic human functions.
Mrs Justice Roberts concluded that if issues regarding consent were difficult for capacitous people to grasp, then great care should be taken before imposing a requirement to understand the concept of consent on those who are potentially incapacitous. She stated that to include in the “relevant information” an understanding of consent sets the bar too high. The judge did not accept it as appropriate to potentially deprive those without capacity of a fundamental and basic human right merely because raising the bar for capacity might provide protection for P or for a victim of non-consensual sex.
Mrs Justice Roberts further concluded that it is not part of the function of the Court of Protection to seek to exclude P from future harm or exposure to the criminal law.
The case proceeded to a subsequent hearing at which Mrs Justice Roberts made final declarations as to JB’s capacity in the other areas identified in the proceedings and declarations that his care plan, which included provision for close supervision in the community and education to improve his social awareness to mitigate risks posed to others, was in his best interests.
Court of Appeal
The Court of Appeal (Lord Justice Baker, Sir Andrew McFarlane and Lord Justice Singh) disagreed with Mrs Justice Roberts’ ruling in the Court of Protection. The judgment is here: A Local Authority v JB [2020] EWCA Civ 735
Lord Justice Baker began his judgment by stating that in order to consider the question of capacity to decide to engage in sexual relations they had to balance three fundamental principles:
The principle of autonomy.
All vulnerable people in society must be protected.
The Mental Capacity Act and the Court of Protection do not exist in a vacuum; it is concerned first and foremost with the individual however it must adhere to general principles of law.
Mr Vikram Sachdeva, on behalf of the local authority, submitted that the relevant information regarding the nature and character of the sexual act includes the fundamental characteristic that it is a mutual act which requires consent of both parties. Mr Sachdeva submitted that a fundamental aspect of sex is consent and that including this in information relevant to the decision is not discriminatory against people who lack capacity because whether the other person is consenting is a strong and determinative factor in a decision made by a person with capacity. Thirdly, the local authority argued that a person who lacks capacity to understand that consent is required should be protected from being placed in a situation where they could inadvertently commit a serious sexual offence. It was further submitted that including the other person’s consent as relevant information does not raise the bar too high and it should not be seen as a more difficult concept than, for example, the potential to fall pregnant.
Mr Patel and Mr Ian Brownhill on behalf of JB submitted that capacity to consent to sexual relations should be assessed on a general and non-specific basis; information relevant to the decision should be kept at a relatively low level reflecting the simple and fundamental nature of the act. Decision-making in consenting to sexual relations is, they said, largely visceral rather than cerebral owing more to instinct and emotion than analysis; issues of capacity are different in criminal and civil law and that there is tension between the potential for exploitation of the vulnerable and P’s right to a sexual life. Mr Patel further argued that consideration of whether someone is consenting would turn the test from being act-specific to person-specific and it would add complexity to a test which needs to be kept simple. He further submitted that it would run contrary to the focus of the Mental Capacity Act 2005, which is to empower P and encourage autonomous decision-making.
Lord Justice Baker summarised that the capacity in issue in this case was in relation to JB’s capacity to decide to engagein sexual relations rather than capacity to consent.
The word “consent” implies agreeing to sexual relations proposed by someone else. But in the present case, it is JB who wishes to initiate sexual relations with women. The capacity in issue in the present case is therefore JB’s capacity to decide to engage in sexual relations. In my judgment, this is how the question of capacity with regard to sexual relations should normally be assessed in most cases. (93)
He concluded that information relevant to the decision inevitably includes the fact that any person with whom P engages in sexual activity must be able to consent to such activity and must in fact consent, as sexual relations between human beings are mutually consensual. A person who does not understand that sexual relations must only take place when the other person is consenting is unable to understand a fundamental part of the information relevant to the decision.
Lord Justice Baker accepts that the test for capacity with regards to sexual relations needs to be as straightforward as possible but he states that that cannot justify excluding information which is clearly relevant to the decision. He further states that it is a responsibility of the Court of Protection to protect P from harm so such a matter cannot be left to the criminal justice system alone. Lord Justice Baker does not agree that including this aspect in the relevant information is discriminatory as it is a restriction which applies to all regardless of capacity and that we all accept restrictions on our autonomy which are necessary for the protection of others.
There were three reasons for setting aside the judgment by Mrs Justice Roberts.
This decision by the Court of Appeal – that an understanding of consent from a sexual partner is necessary for a person to be deemed to have capacity to engage in sexual relations – is the ruling that JB (via his litigation friend the Official Solicitor) has appealed to the Supreme Court.
Why it matters
As was acknowledged in the Court of Appeal judgment, the issue of capacity to engage in sex “is of great importance to people with learning disabilities or acquired disorders of the brain or mind” (para. 3). As things now stand, since the Court of Appeal judgment, capacity to engage in sex does require an understanding that the other person must have the capacity to consent, and does in fact consent, before and throughout the sexual activity.
“If we are preparing young people for the ‘real world’ then consent of partners is part of that world. It says to me that we are actually considering that people may engage in sexual relationships and so must be prepared to think through what’s involved. That it is now more than the physical possibility of pregnancy and sexually transmitted infections, it is about the possibility that the other person may say ‘no’ or they may say ‘stop’. This has to be a good thing.” ( Lorraine Currie, Capacity, Consent and Sexual Relations: How latest case may help social workers navigate challenges, 17 June 2020, Community Care)
There’s also a fascinating video-discussion about the JB case (and other cases involving capacity for sex) between Nicola Kohn and Victoria Butler-Cole QC – the latter of whom points out the “peculiar” fact that the case in the Court of Appeal was “argued entirely by men and heard entirely by men – not a single woman appeared, sadly, at any point in the Court of Appeal process, either as counsel or in terms of the judges”. Victoria Butler-Cole also points to a gulf between the way in which professionals “on the ground” (psychologists, psychiatrists, speech and language therapists) have approached these questions in carrying out capacity assessments, and the “abstract” approach mandated by the court thus far, and speculates that the Court of Appeal judgment “will probably make more sense” to people working with those with mental disabilities whereas “previously there’s perhaps been more of a disconnect between the law and the way in which things are done on the ground”.
Listening to this half-hour video-discussion would be really useful additional background for anyone intending to observe the Supreme Court hearing, or simply wanting to learn more about issues relating to capacity to engage in sex.
Note: Given the importance of this case to people with learning disabilities and cognitive impairments, the Open Justice Court of Protection Project has asked the Supreme Court to produce an “Easy Read” introduction to the issues, and we understand this will be produced before the hearing. We will link to it from here.
Charlotte Roscoe is a paralegal in the Public Law and Human Rights Department at Irwin Mitchell in Newcastle She has worked at Irwin Mitchell for nearly 5 years and works in areas such as mental capacity, judicial review and education law. She tweets @charlie_roscoe
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia
This case before Mrs Justice Roberts, (COP 13503831 heard on 6th – 8th July 2021) concerns coercive control and a planned predatory marriage (or civil partnership).
Evidence from an expert psychologist appointed by the court, Professor Dubrow-Marshall, is that NC has formed a coercive and controlling relationship with BU, the protected person at the centre of the case.
In a counselling journal (pdf here), Professor Dubrow-Marshall has described controlling and coercive behaviour as involving (for example) “isolating a person from their friends and family”, “monitoring their time” and “taking control over aspects of their everyday life, such as where they can go, who they can see and when they can sleep.”
Controlling or coercive behaviour in an intimate or family relationship is an offence under s. 76 of the Serious Crime Act 2015. The Statutory Guidance Framework describes it like this:
There’s a useful podcast by LawPodUK concerned with the issue of domestic abuse and coercive and controlling behaviour in the Family Courts here.
Issues in this case
The applicant in this case is BU’s daughter (represented by Parishil Patel QC and Ian Brownhill). She is asking the court to:
make a declaration under s. 15 MCA 2005 that her mother lacks capacity to make decisions as to her contact with others
make an order under s.16 MCA 2005 preventing NC from having contact with her mother and
make an order (under the inherent jurisdiction) that no marriage or civil partnership should be permitted between her mother and NC – or, alternatively, a forced marriage protection order in those terms.
The other parties are BU herself (represented by Bridget Dolan QC via her litigation friend, the Official Solicitor), NC (as a litigant in person), and the local authority (represented by Laura Twist).
The age of BU is protected by the revised reporting restrictions “other than to say she is over 60“ (See footnote 1 for an explanation of the strikethrough text.)
BU was 69 at the time of the hearing. At a previous hearing (in November 2020) a final declaration was made that she lacks capacity to make decisions about her property and financial affairs. A professional Deputy was appointed to manage her significant assets – the revised reporting restriction prevents me from reporting even “the approximate value of BU’s estate or its source“, estimated by the financial deputy at the time of her appointment to be around £1.3 million, including a fairly substantial inheritance she received following her mother’s death in 2019.
These earlier court hearings were prompted by some very serious concerns about the behaviour of NC who had moved into BU’s home a year or so earlier. In Spring 2020, the police became involved as a number of banks and building societies reported concerns in relation to activities on BU’s accounts. Some of BU’s funds are now missing and others have been used to buy items (which the revised reporting restrictions prevent me from describing)a boat, a caravan, a pick-up truck and a van, all purchased in her name but apparently used by NC in part in the course of his activities as a self-employed builder.
NC was arrested, interviewed under caution and released with bail conditions not to contact BU or enter the street on which she lives.
In the past, NC has been convicted of more than twenty offences, mostly relating to fraud and theft. His most recent conviction was in 2002 when he was sentenced to 9 years imprisonment.
BU has a life-long learning disability (not formally diagnosed) and recent arterial disease of the brain. This affects her decision-making capacity in many domains, including managing her finances, but all parties agree that she has the mental capacity to decide where to live, what care to receive and, most significantly, she has capacity to decide whether to marry or have a civil partnership.
NC states that he is in a romantic relationship with BU and that he wants to enter into a civil partnership with her.
BU is very angry about the interference in her life – by her family and by the courts.
Because of the bail conditions imposed by the criminal court against NC she has been separated from him for a year, and is “desperately sad and most likely depressed” at being prevented from seeing him. She is angry about her family’s attempts to separate her from NC, and said that her “world collapsed” when she was prevented from seeing him. She wants to get her life back – including managing her own finances, living with NC, and forming a civil partnership with him.
The judge heard from BU in private at the outset of the hearing.
Protection vs. Autonomy
The Official Solicitor has reserved her position on where BU’s best interests lie until the oral evidence has been heard. She wishes to emphasise “the importance of respecting the autonomy and self-determination of BU in so far as this is commensurate with the need to protect her and to safeguard her interests”[2].
The Official Solicitor acknowledges that the evidence overwhelmingly supports the view that NC is “a confidence trickster whose long-term lifestyle appears to have involved repeatedly inveigling money from vulnerable people through coercive control and, at least on three occasions, blackmail”. Nonetheless, she considers that BU’s views should be relayed as clearly as possible to the court and the emotional consequences of her wish to live with NC being overridden should be properly considered. There is also a possibility (raised by Professor Dubrow-Marshall ) that BU and NC could be educated and counselled to better appreciate the coercive influence and power dynamics in their relationship and recast their relationship with those elements removed.
It is particularly significant that BU has been assessed as having the capacity to marry or form a civil partnership: for a judge to prevent any such union under these circumstances would be a draconian move and a profound interference with BU’s Article 8 right to respect for family life and Article 12 right to marry. The Official Solicitor points out that this would be “a significant step that requires the most compelling of justifications to be considered proportionate and lawful”.
6th July 2021
On the first day of the hearing, Parishil Patel QC presented a very useful opening summary of the case.
A Consultant in Old Age Psychiatry gave evidence about BU’s cognitive functioning and confirmed that she lacks capacity to make her own decisions about her finances and about contact – but that she does have capacity to marry or to form a civil partnership.
Then Professor Dubrow-Marshall gave evidence about BU’s “total reliance and dedication” to NC, which he described as “a trauma bond”, or “trauma-coerced attachment”. He said, however, that there is “a genuine bond of love and affection between them” and suggested that NC was “less than fully aware of the effect of his behaviour – like the boisterous kid in the playground who doesn’t know his own strength“. According to this witness, NC is more “negligent” than acting “with malice aforethought” and “needs to be more reflective about his influence“. This analysis is disputed by BU’s daughter who believes that NC intends to coerce and control and unduly influence her mother.
There will be further evidence from Professor Dubrow-Marshall on 7th July 2021, and evidence from lay witnesses. The plan is for closing submissions on the morning of 8th July 2021. I understand that judgment is likely to be reserved.
7th July 2021
After some “kerfuffle” about the transparency order (more on this later), the court continued to hear from witnesses.
Expert psychologist
Professor Dubrow-Marshall (whose evidence in chief was given yesterday) was cross examined on his evidence that NC is coercively controlling and exerting undue influence on BU. He talked about the “unhealthily dependent nature of the relationship”, saying, “he is her entire world… she is psychologically entirely bound up with him”. This means that BU:
“… believes she’s making these decisions willingly but they are in reality part of the trauma-attachment and she cannot make authentic decisions independently of him. Her true wishes are impossible to distinguish from NC’s”.
Nonetheless, Professor Dubrow-Marshall reported that NC and BU have “a genuinely intimate relationship that does involve a very close bond”. His assessment is that “NC is not cognizant, largely, of his influence on BU”.
Professor Dubrow-Marshall reiterated his view that counselling and psycho-education should be attempted (with both NC and BU) to support them in an effort to rebuild their relationship, without the elements of coercion and control. He was not optimistic about the success of this endeavour, describing it as: “a task as herculean as demolishing and rebuilding a house brick by brick”.
He also recommended therapy should involve BU’s family. At this point BU could be seen onscreen vigorously indicating her rejection of this idea.
Finance Deputy
The next witness called was the Finance Deputy, who reported some financial issues concerning the timeline at which NC had become more closely involved with BU and said that she did not accept that NC’s undue influence and moving in with BU at the time when he did was “coincidental”.
BU’s daughter
BU’s daughter was asked about how she first became concerned about NU’s involvement in her mother’s life and talked about early financial concerns, and NU moving in to her mother’s house. Anxious about what was going on, she had looked on the internet for information about BU’s business and found a Facebook group with complaints from customers. This led her to speak to four other women who’d been “preyed upon” by NU. A google search uncovered an incident when NC “went into a bank with a fake explosive strapped to him, so I was able to find a newspaper article about that. I was very concerned to find this type of person was in my mum’s house”.
She made it abundantly clear that she (and her sister) had previously had a very close relationship with BU.
Counsel for the daughter, Parishil Patel, read out the report of the social worker:
“BU appears to have completely turned against her family. Relationships are being destroyed because BU does not understand that her family are trying to protect her but feel that they are trying to control her and ruin her life”.
Because NC was a litigant in person, he was able to cross-examine BU’s daughter – which was a very uncomfortable experience to watch. He seemed very calm, controlled and unemotional (and – to me – rather menacing). It was often hard to understand where his questions were headed. He seemed not to have any idea of how BU’s daughter had experienced his involvement in her mother’s life. Counsel for the daughter intervened at various points where his questions were inappropriate.
NC
Counsel for the daughter opened the questioning by asking NC whether he accepted Professor Dubrow-Marshall’s assessment that he was coercing and controlling BU and subjecting her to undue influence. He replied that there was “a lot to take in” and that he needed to “think about it”. When the judge intervened to push him on this, asking whether there was a possibility in his view that Professor Dubrow-Marshall may be right, he conceded that “the Professor may be right”.
However, he continued to maintain that BU was being controlled and coerced by her own family, who were trying to get control over her money.
Asked again about the issue of the coercive control he allegedly exerts over BU, he said: “It’s a catch 22. If I accept coercive control it’s a first step forward to seeing BU again, but I don’t accept that I am doing that”. The judge said, “I am going to treat that as a retraction of your earlier evidence”.
He denied allegations of wrong-doing in relation to other women – including those contacted by BU’s daughter, saying that this was “a collective accusation and a false accusation”.
Patel: Are you saying that all these complaints were coordinated and
there was a sort of conspiracy to get you?
NC: Oh god, yes.
Patel: Oh you are?
NC: Yes.
He projected (from my perspective) an impression of someone who felt aggrieved and misunderstood – a victim of conspiracy. It was hard to know whether or not he actually believes this.
He acknowledged that he had breached the court order (and the police bail conditions) on multiple occasions by contacting BU. He also confirmed that he intended in the future to marry or to form a civil partnership with her.
8th July 2021
On this final day of the hearing, all four parties (BU’s daughter, NC, the local authority and the Official Solicitor) presented closing submissions.
Speaking for BU’s daughter, Parishil Patel QC said that she had brought the proceedings to prevent the continuing exploitation and manipulation of her mother. He invited the court to find, on the balance of probability, that NC was deliberately coercing and controlling BU and unduly influencing her.
“There’s a plethora of evidence” said Parishil Patel, “that NC is a man who, over a number of years, has shown a particular modus operandi in which he befriends vulnerable people, gains their trust, and then exploits them financially”.
He described NC’s evidence as the “wholly incredible” and “evasive” evidence of “a fantasist”.
“The overall tenor of his evidence was that there was a conspiracy by a number of very disparate people, all of whom had got together, all of whom, on his evidence, were lying, with a common goal to discredit him. But rather than this being evidence of a conspiracy, our submission is that this was evidence of his modus operandi of targeting vulnerable people.”
Following the evidence from the Consultant in Old Age Psychiatry (who gave oral evidence in court on 7th July 2021), BU’s daughter asks for a final declaration that NC lacks capacity to make decisions as to contact with others. This position had been previously accepted by the Official Solicitor, the local authority and BU’s daughter, but not by NC – who has now had the opportunity to cross-examine the Consultant.
It’s very clear from the attendance note (when the judge met privately with BU) that BU does want to have contact with NC, but this (said Parishil Patel) accords with evidence from Professor Dubrow-Marshall that “her wishes cannot be disentangled from his – that her being has been subsumed entirely into his”. He said that the court:
“… should place very little weight on BU’s present wishes as they don’t accord with her past wishes which, in accordance with s.4 of the Mental Capacity Act the court has to take into account. The evidence of BU’s daughter is that her mother wouldn’t even countenance someone who got themselves into trouble, let alone someone with the criminal history NC has. Nor would she voluntarily get herself into a position where she lost contact with her two daughters…”
The injunction against NC’s contact with BU should stay in place. However, bearing in mind the “casual way in which NC breached that order on 40 occasions between July and August last year” it is apparent that he is “quite unable to see the seriousness of breaching the order”. There is a risk that NC will breach it again, and either marry or enter into a civil partnership with BU. This could be prevented either under the inherent jurisdiction or via a forced marriage protection order. BU’s daughter asks for an order to prevent marriage and civil partnership with BU under section 63A of the Family Law Act 1996.
NC (litigant in person)
As he has been over the last two days of this hearing, NC was an articulate and fluent speaker who had clearly prepared carefully for what he wanted the court to hear. He said some “key words” had been mentioned in Professor Dubrow-Marshall’s evidence.
“The professor said that BU was lost in a totalisation state – that she’d been taken over by me”. He read out some dictionary definitions of “totalitarian”, including this one from dictionary.com
“These words were being used as a description of BU’s position”, he said. The judge intervened: “I think rather more-“ and NC interrupted to complete her sentence: “… of my behaviour”.
“This is not the case at all”, said NC. “BU has always and with some degree of certainty exercised her own will”. He went on to describe how he has “facilitated” BU’s decisions, but “BU has been the first to decide and the last to decide on all the decisions to be made. I just helped her.” He said that the couple had been “tested through the time of adversity and though we are hurt we are not fallen”.
The words “trauma-bond” (also used repeatedly in Professor Dubrow-Marshall’s evidence) is “definitely not the case in my life with BU”.
Judge: So you don’t recognise the Professor’s description?
NC: I recognise the description, but it’s not happening in our lives.
His explanation as to why BU was not answering questions about why she wanted to spend time with him was that she was protecting her privacy.
NC: She’s an extremely private individual with regards to her health, her finances, her home, her relationships and her family. And because of the arrest, and the investigations into her finances, her health and her mental well-being, all the facets of her personality and home life are being forensically scrutinised. She’s purposely not going into depth describing our relationship – which she’s perfectly able to – because that is the last bastion that is hers, that is private. She’s purposely not answering questions because it’s special to her, and she’s protective of that.
Judge: And you say that’s the reason for the superficiality of her answers.
NC: Yes. She’s protecting something private and personal.
He ended by offering a public apology to BU. He said he was sorry that her involvement with him (“my personality and my offending history”) had resulted in this invasion of her privacy: “I’m sorry your house got raided by the police. I’m sorry everyone is saying you don’t know your own mind”
The local authority reiterated that they had “limited involvement” in this case. They “understand the concerns and think appointment of the Deputy and the bail conditions mean that any risks are sufficiently mitigated”. They have no objections to an order that BU lacks capacity to make decisions about contact, but will not supervise contact if it is ordered. They characterised their position as “neutral”.
The Official Solicitor is charged with representing the protected party’s best interests – as distinct from what that person states they want. Bridget Dolan QC said that she “does recognise BU’s deeply held wishes and the affection she professes to feel for NC and he for her”. But:
… whatever his motives, and whether he intends this or not, there is coercive control and unhealthy dependency in which he’s substituting his mind for hers – and the court should not allow this to continue. No persons should be so controlled. BU should be given the opportunity to regain and exercise her own autonomy.”
The Official Solicitor did not support contact:
“The risk she is entitled to protection from is not only financial exploitation but also totalising control, and estrangement from her loving and supportive family. We accept that can only be achieved by separation from NC. We accept the recommendation for person-centred existential psychotherapy and education to assist her in coming to terms with the loss of the relationship, or to reset their relationship to one which does not involve extreme coercion of her by him.”
Stating that “NC showed complete contempt for the civil injunction and bail conditions” and that he shows “clear distain for the authority of the court”, the Official Solicitor was not satisfied that a civil injunction alone was sufficient to prevent NC from meeting with BU and forming a civil partnership with her. On those grounds, a Forced Marriage Protection Order (FMPO) should be considered. The Official Solicitor acknowledged that “this is obviously a very significant step to take in respect of somebody who has capacity to marry and expresses the wish to do so” and said that a FMPO can “only be used when a person’s will is being overborne by another person such that it destroys their consent”.
She referred to Re K (Forced Marriage: Passport Order) [2020] EWCA Civ 190) as an authority that a FMPO can be made when a person does in fact have capacity to consent to marriage and also to that that it was ‘unlikely in all but the most serious and clear cases’that an indefinite order would be appropriate (paras. 27 and 77). In fact, the applicant in today’s case was requesting a FMPO for one year and the Official Solicitor supported that as appropriate.
Finally, the judge said:
“I appreciate the need for a resolution of these matters for BU, for her wider family, and for NC. The issues involved here, and the gravity of the consequences for all parties but especially BU, are such that it would be wrong for me to give my decision without the reasons for it. I will endeavour to produce a formal written judgment before the long vacation.”
This means there may be a published judgment by 30th July (although it may be later than this). We will post a link to the judgment as soon as we know about it.
Update: The judgment
In her judgment, published on 24th September 2021, Mrs Justice Roberts reflects on the difficulty of making a decision that will prevent BU from seeing the man she believes offers her companionship and happiness and without whom she sees an “empty” and “bleak” future.
Nonetheless, she concludes that BU lacks capacity to make decisions about contact with NC because of the “corrosive and coercive nature of the control” he has exercised over her. She describes NC as “arrogant and narcissistic”. He has, finds Roberts J, “engaged on a deliberate and calculated attempt to subvert any independent decision-making on BU’s part”. The judge finds that “BU has indeed been manipulated by NC with deliberate intent to secure for himself a financial benefit.” She says: I am wholly persuaded by the evidence that he saw BU’s wealth as the means by which he could achieve not only financial stability for himself during her lifetime but also financial benefit after her death.“
She concludes:
“I am in no doubt at all that it is not in her best interests to be exposed to further risk of financial abuse and/or the risk of future manipulation by NC through the control he has exerted through his behaviour to date.“
Mrs Justice Roberts made a final order providing that there will be no contact between NC and BU, with a penal notice attached, because C “must be quite clear that any breach or attempted breach of that order may expose him to severe consequences if he is found to be in contempt of court and that may include a period of imprisonment“. Because NC has previously breached clear mandatory injunctions from the court, the judge also made a Forced Marriage Protection order and an injunction to prevent NC from entering into a civil partnership with BU without first obtaining permission from the court.
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @kitzingercelia
[1] I originally posted this blog at 7.30am on 7th July 2021. I removed it from the site at around 9.30am when Bridget Dolan QC (who I had alerted to the blog post) informed me that I was in breach of a Transparency Order I hadn’t been sent. She then sent it to me and I revised the blog post to comply with the order she had sent me. However, when I logged on to the hearing at around 10.30am that morning, Bridget Dolan QC was making an application to the judge for an amended, more restrictive, Transparency Order that would make it an offence to report some of the information included in the blog post that I had revised to comply with the Order she had already sent me. The new restrictions in the amended Transparency Order related to the age of the woman at the centre of the case, the value and source of her assets, and also prohibited “any description of the vehicles” bought by her partner. Despite some apparent disquiet, the judge did approve this amended more restrictive Transparency Order on an interim basis, saying that she would hear submissions concerning the Transparency Order at the end of the substantive business of the hearing. I then re-revised my blog post and re-posted it later the same day with revisions as required by amended (and in my view, retrospective) reporting restrictions approved by the Court. I subsequently consulted with journalists Louise Tickle and Brian Farmer about what had happened and submitted a written statement to the Court, and then negotiated with counsel during the lunch break on the last day to arrive at an agreed solution which Bridget Dolan presented to the judge. The judge subsequently approved a less restrictive Transparency Order – in effect, removing the ‘retrospective’ restrictions. Rather than simply delete the version of this blog that was required by the amended (‘retrospective’, more restrictive) Transparency Order, I have used strikethrough text (like this) to show its effect. A forthcoming blog will discuss my concern that a retrospective Transparency Orders should have been entertained by the court. Note that the issue of reporting restrictions in this case is also covered in the judgment (paras. 108-110).
[2] We are not allowed to audio-record hearings, so quotations from the hearing are as accurate and I could make them but are taken from typed notes made during the hearing and are unlikely to be verbatim.
The decision in ‘An Expectant Mother’ is unsettling on many levels, not least because it takes a harsh legal approach when a care-full one is needed. Instead of paying even more attention to the experience of the agoraphobic pregnant woman at the heart of this case, somehow the judgment has ended up turning her pregnancy and her agoraphobia against her.
How has this Court of Protection decision come to authorise forcible removal, a planned delivery, chemical restraint, and physical restraint of a pregnant woman who wants to have a home birth? How has P’s agoraphobia become a reason to deny her this choice, rather than a reason to support her in managing her anxiety and her childbirth at home?
One of the frustrating aspects of this judgment is that it could have been so different. The Court of Protection has sometimes delivered on the ‘empowering’ promise of the Mental Capacity Act 2005 by taking extra care to listen to and respect the wishes, feelings and values and beliefs of the Ps who appear before it.
But here the Court has become a means of managing resistant pregnant bodies in anticipation of childbirth, and not for the first time (see Walmsley 2014, Butler Cole 2019). Force and restraint, including the use of personnel trained in Prevention and Management of Violence and Aggression (PMVA) techniques, were authorised as part of the care plan in order to get a woman through childbirth. A woman’s wish for a healthy baby was extracted from the collection of wishes, feelings, and knowledge that she has about her pregnant life, and joined with medical evidence (of a 10% risk of a need for urgent transfer from home to hospital and a 1% risk of a stillbirth) to justify orders permitting forcible removal, a planned delivery, and physical and chemical restraint.
We know that the use of coercive measures in pregnancy, and in mental health, is a key process of generating gender, class, ableist and racialised inequalities for those who participate in life’s reproduction, a process which moves across policing and health care (Chadwick 2018, Thompson 2021). We know too that pregnant people who are living with anxiety, phobias and other mental health conditions want support with difficult situations in their everyday experience and in moments of crisis. What should we legal academics do with this knowledge when commenting on a case of this kind? One thing we could do is draw on the contributions of Black feminists, abolitionists and others who show us how to replace coercion with care, even in moments of crisis, and imagine what critical legal care might be.
In seeking to practice some critical legal care with this blog, I try to avoid ‘blaming the judge’, even though I am critical of the way the judgment has been made. With the possibility of rewriting judgments in mind, I approach the judgment not just as the judge’s authoritative words, but as the result of a series of legal moves, a series which could be arranged differently, and more care-fully. I identify four legal moves that we – the public community to whom law is accountable – need to understand better if we are to participate, and succeed, in making law more care-ful and attentive to the richness of life’s diversity.
The first move is the representation of the pregnant woman as someone whose key social role is the delivery of a healthy baby. The value of her reproductive labour, and of her knowledge about how best to manage that labour, becomes diminished as she is seen by law as always, already a mother. A second move is that the everyday social aspects of making decisions get squeezed out of capacity testing. The capacity test, which normally combines clinical diagnosis with assessment of functional criteria, becomes a biomedical diagnosis that sees a patient as being overwhelmed by, rather than responding to, her symptoms. Third, the judgment has the effect of flattening what is usually a complex multi-stranded process for determining best interests into a legal concern for reducing the risk of stillbirth at all costs. And fourth the consideration of the restraint issues as one dimension of the best interests determination, and without a fuller rights-based assessment of whether such restraint was necessary, has the effect of silencing P. Her views on the use of physical or chemical restraint are not reported even though she participated in the hearing.
1. Seeing the pregnant woman as a mother in need of management
When we law teachers ask students to draw out the significance of a case in a commentary, typically we ask them to first identify the ‘material facts’ of the case. Selecting, and characterising, the material facts of a situation such as this one, where a pregnant woman is receiving support in managing her pregnancy while living with agoraphobia, is a vital legal process. Such selection brings the facts of the person’s life to bear on the law and presents an opportunity to represent them as a whole person with likes and dislikes, quirks and trivialities (see further Rackley 2010). This is a different, if complementary, factual process to the one where medical evidence about clinical risks is considered. It preserves legal space for the curious and particular features of a person’s life, such as the lived experience of agoraphobia while pregnant, which an evidence base might not capture. And it is vital in reminding us that life before the law is not just a matter of biological fact (see further Harrington, Series and Ruck Keene 2019), but a creative process of living in and making our own of socio-legal worlds.
The selection of ‘mother’ in the name of the case and throughout the judgment as the way of characterising this pregnant woman is already telling us something about how the material facts of this case are perceived. The case name tells us that this case is different from the usual incapacity cases where initials are bequeathed to the individuals involved as part of the practice of protecting people’s privacy. And it tells us that the pregnant woman whose care is at the heart of this case is already a mother, even though she has not yet given birth. If this one pregnant part of her story, a part that is important to her, becomes the whole story for law, the part comes to overwhelm the whole and disables her telling of her pregnant future. The problem with this telling of the woman’s story is that her management of her gestational labour becomes invisible, and devalued, in the rush to allow others to manage her as the problem.
2. Squeezing the social dimensions out of capacity and agoraphobia
The second move that I find interesting about the judgment is the way that her lived experience of agoraphobia is turned into a state of being overwhelmed by her symptoms to the point where she is unable to make decisions related to leaving home, but able to make decisions between modes of planned delivery in hospital and between types of anaesthesia.
This happens as the court addresses the first legal issue: whether or not she has legal capacity to make her own decisions. Capacity decisions are crucial legal decisions, which are often made in an everyday context by those mediating access to social care or health care for individuals, and can vary from context to context. If she has legal capacity to make her own medical decisions, then the doctrine of consent applies and she has the right to refuse recommended treatment for her own reasons even if it puts her pregnant life at risk. If she does not have legal capacity, the doctrine of ‘best interests’ applies by virtue of s. 1 of the Mental Capacity Act 2005, and others – here carers and ultimately the judge – decide how she is to be treated.
In response to the hospital’s request for an order and having heard from the woman’s litigation friend the Official Solicitor and two medical experts Holman J declared pursuant to s. 15 of the MCA, that “the respondent lacks capacity a) to conduct these proceedings; and b) to make decisions about the location of the delivery of her baby.”
In getting to this decision however, Holman J does not frame his consideration of the capacity law issues by reference to the ‘cardinal principles which flow from the statute’. These cardinal principles of capacity law were articulated by MacDonald J in C (2015) (paras 25-33), and are cited by MacDonald J in GH (2021) at para 21, the precedent to which Holman J refers for legal authority when he says:
“The judgment of MacDonald J in East Lancashire Hospitals NHS Trust v GH contains a very thorough analysis of the relevant law at paragraphs 19 to 28. I have read it during this hearing. I agree with it, and I incorporate it into this judgment by reference as my narrative as to the applicable law.” (para. 18)
Rather he goes straight to medical evidence as the source for generating the legal reasons why she does not have capacity. The first reason that the court gives is that she has the kind of diagnosis that is required in order to make a legal finding of incapacity because she has ‘longstanding and deep-seated’ (para 10) agoraphobia. Agoraphobia, the court notes “isa classified mental illness, and an impairment of, or disturbance in, the functioning of her mind or brain within the meaning of section 2(1) of the Mental Capacity Act 2005” (para 7). The second reason is because the judge says that she cannot “weigh matters in the balance if the activity in point entails her leaving her home”, which effectively means that she has failed one of the four functional aspects of the capacity test under s 3(1)(c) of the MCA.
There are several points worth noting about how the capacity rules are applied in making the decision here. First, the elaboration of the statutory framework is partial and incomplete. While Holman J clarifies that section 2(1) MCA is the basis for the diagnostic test which is used to find whether people have capacity or not, he does not clarify that section 3 is the statutory basis for the functional test, including the ability to weigh information about options, and he does not follow the cardinal principles (GH para 21; C para 33) in applying the functional test first and the diagnostic test second.
The sequencing of the tests matters because applying the functional test first is a means of delivering on the non-discriminatory objectives of the legislation. This sequencing seeks to prevent diagnosis being prioritised over social functions in the capacity assessment, and to avoid any assumption of incapacity on the basis of the person’s condition. Holman J also does not cite or apply relevant aspects of section 1 MCA, including the principle that unwise decisions are not in themselves evidence of incapacity, or that incapacity should not be found without first taking all practicable steps to help the person make the decision. It’s as if the fact of substantial agreement on the incapacity of an agoraphobic woman pushes parts of the legal framework into the background.
Second, he foregrounds biomedical knowledge over both legal and experiential knowledge in his application of the legal tests for capacity. He does this by focusing on the diagnostic aspects over the functional aspects of the tests. He also accepts the medical experts’ views rather than questioning them or contextualising them legally. And he ignores the pregnant woman’s knowledge of her pregnancy, her agoraphobia, and herself, information that could be relevant to the question of capacity.
Third, in making an anticipatory finding of incapacity he does not take the time-specific, or moment-specific, approach which is the generally accepted approach to capacity-testing. Agoraphobia becomes a condition which reaches into the future and compromises this woman’s decision-making capacity on home-related issues with no consideration of how her own practice, or other social interventions such as support for her (see here and here), could reduce such compromising effects.
3. Flattening a multi-stranded ‘best interests’ test into the avoidance of stillbirth at all costs
Before Holman J begins his assessment of what is in this woman’s best interests, he mentions one aspect of her wishes. The wishes of an incapacitated person are legally relevant as one of the key components of ‘best interests’ under section 4 MCA, and as Hayden J says inR (2020), and MacDonald J says in GH (2021), it has become more usual for the Court of Protection to respect an incapacitated person’s wishes and feelings, even if that means accepting significant clinical risks, including a risk of death. So Holman J’s reference to the pregnant woman’s wishes at this point in the judgment, as he is about to present his best interests assessment, is interesting and significant.
We are told that the woman “dearly wishes to give birth to a healthy baby, undamaged by the process of birth” (para 10). The purpose of telling the reader this is then revealed as the judge says that “the safety and wellbeing of the expected baby, as well as her own safety and wellbeing, are relevant to the consideration of the mother’s own best interests”. In two sentences, the legal test of best interests is framed by reference to birth as a damaging process, the baby-regarding wishes of the pregnant woman, and the safety and well-being of the expected baby as part of the pregnant woman’s best interests. The stage has been set for flattening the best interests test into an assessment of how to avoid stillbirth at all costs. It could have been a very different judgment if the judge had framed his assessment of best interests by reference to the full statutory framework, Aintree v James[2013] UKSC 67, other CoP jurisprudence, and a fuller consideration of her wishes and feelings.
The next interesting aspect of the judgment is this regard is its materialisation of the potential for an emergency as ‘the nub of the case’, so that a possible future crisis becomes the problem to be resolved in the here and now. The effect (whatever the intention) of making the case a matter of crisis is, as Harrington has said in relation to previous similar cases (2017, 80), to authorise more authoritarian management. Rather than actually manage contingency planning in the here and now so as to try and minimise the need for future authoritarian intervention, contingency planning becomes the means by which authoritarian intervention is delivered now, as the moment of crisis is brought forward.
The judge’s next step in figuring out what is in the best interests of this pregnant woman is to consider information about foetocentric risks, rather than risks in the round. Here again the judgment is being driven along by parts of the medical evidence rather than by the statutory framework, or by the situated experience of the pregnant woman. Interestingly we learn that the foetus-baby appears to be developing normally and that there is no particular reason to expect anything other than a normal delivery: “The mother is physically healthy, and currently there are no specific indicators that she may not have an uneventful, spontaneous labour and vaginal delivery… there is no case specific indication that any particular medical emergency will arise in this case” (para 12). But that information does not end up having much legal weight given the ultimate decision to proceed as if there is an emergency. Rather the legal weight is given to the risk of a need for an urgent transfer to hospital and to the risk of stillbirth or of a seriously damaged baby (para 13-14). The latter is reported as being one in 200 hospital births, with that figure doubling to one in 100 with cases which start at homebirths, drawing on the expert evidence of Professor Walker, the consultant obstetrician instructed by the Official Solicitor.
Having considered this information about the risks of a homebirth, the judgment then moves to a relevant legal rule, in the form of the precedent of East Lancashire Hospitals NHS Trust v. GH[2021] EWCOP 18 and the only case which is cited (paras 15-18) in this judgment. It is more usual in terms of legal method to elaborate the rules first and then to consider how they should be applied. GH similarly involved the application of statutory rules on capacity, best interests and related matters in the context of an agoraphobic patient whose labour was obstructed but did not wish to travel to hospital for the birth of her child. After an emergency hearing between 10pm and midnight MacDonald J ruled that the pregnant woman “could, in her best interests, be transported to hospital using reasonable and proportionate force if necessary” (para 15). In the event, the woman’s labour progressed and the baby was delivered safely at home before the court’s ruling could be implemented.
Holman J makes two uses of GH. He adopts MacDonald J’s account of the relevant law as part of his legal narrative, but by directing us to GH for a fuller articulation of legal authority (para 18), he decides that the significance of GH overall is “the need to anticipate problems of this kind and to face up to them as best one can in advance, even if that involves speculation and/or reliance upon statistics” (para 17). One of the advantages of such anticipation is that “the mother herself has been able to participate, and has participated,throughout the hearing, at a time when she is not in labour, pain or distress” (para 17). Her participation, including by video link during the hearing, has not resulted however either in the judicial elaboration of her values, wishes and feelings, except by reference to her wish to have a healthy baby, and her agoraphobia-related wish not to leave her home. And it has not resulted in a decision which is respectful of her knowledge, labour and wishes. She may have participated, but she is not very present in the judgment.
Having cited and considered the application of GH, Holman J’s next step is to identify four different actions, which may be necessary for a safe delivery of the baby to be, and decide whether they can be authorised as being in her best interests. Transfer to the hospital (1) for a planned delivery (2), the use of sedation (3), and the use of physical restraint (4) are addressed in turn, although a planned, rather than spontaneous, delivery is only addressed as an aspect of the transfer to hospital and not on its own terms. The assessment of these four actions in light of the different components of section 4 is however pretty uneven and lacking in detail. Holman J says:
“All the doctors who gave evidence in this case agree, the Official Solicitor now agrees, and I agree, that, for all the above reasons, it is preferable, and in the overall best interests of this particular mother and her baby, that she should give birth in hospital in a planned way around the EDD, but before she goes into spontaneous labour” (para 21).
We seem to have an example of ‘hidden law-making’ (Montgomery, Jones and Biggs 2011; Guilloud Doyle 2021) here as the apparent agreement of the medical experts and the Official Solicitor, and indeed the family members – everyone except the pregnant woman – becomes the basis on which the orders are authorised. The only time that Holman J refers to section 4 MCA as the statutory framework that should be guiding the court in determining ‘best interests’ in light of the evidence, is when he notes that the views of her partner and her mother – in favour of a hospital birth – are legally relevant since s 4(7) directs consideration of the views of family members (para 21).
Finally, at para 22, Holman J tells us what the pregnant woman wants for her childbirth. These wishes are legally relevant as part of what section 4 requires. Not only are they legally relevant, but the ‘wishes and feelings’ of an incapacitated person have come to be a primary consideration in best interests determinations at least since the decision of the UKSC in Aintree v James[2013] UKSC 67. In that case Lady Hale said (providing a statement which is often cited in incapacity cases and related academic analysis):
“[I]n considering the best interests of this particular patient and at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be.” (para 39)
There is not much evidence in this judgment of the judge in this case having determined best interests in this way.
Judges in the Court of Protection have recognised a trend towards respecting the wishes of incapacitated persons when it comes to medical treatment. Hayden J said in R(2020), a case concerning the authorisation of a caesarean section in best interests but against the wishes of a woman with fluctuating capacity:
“I am being invited to determine whether, if the adult in question loses capacity, a medical intervention can be authorised which is contrary to her expressed wishes, whilst capacitous. In virtually every application that comes before this Court, relating to medical treatment, the answer to the question posed here would be a resounding ‘no’” (para 33).
But the fact that the adult in question is pregnant means that Hayden J goes on to say:
“It is important that respect for P’s autonomy remains in focus but it will rarely be the case, in my judgement, that P’s best interests will be promoted by permitting the death of, or brain injury to, an otherwise viable and healthy foetus.” (para 63)
‘An Expectant Mother’, continues this pattern of making the childbirth cases go against the general trend of respecting the known wishes of incapacitated people. And it does so in terms which recognise that the order might also compromise her health and well-being.
Here Holman J says:
“The mother herself says that she would prefer to give birth at home, but she clearly expresses that that is due to her agoraphobia and fear of going out. I am satisfied that, but for her agoraphobia, the mother herself would opt for a hospital birth, as encouraged by her mother and partner.” (para 22)
In one sentence he turns her wishes into the expression of agoraphobia, and conjures up a woman who would opt for a hospital birth ‘but for her agoraphobia.’ The wish is trivialised by turning it into an expression of mental illness, and she is imagined not as she is – a whole person who lives with agoraphobia – but as someone who would opt for hospital birth if she was not agoraphobic. Her wish for a home birth is rendered delusional, the product of her agoraphobia, rather than the experience-based view of an agoraphobic person. The effect is to say that this is not the kind of wish that should be given legal weight. Not only is the agoraphobia pushing up against the legal presumption of capacity (in a similar process to the anorexia cases), it is also perceived in this judgment to be a reason for diminishing the value of the incapacitated person’s wishes.
4. Silencing the one to be restrained
Having decided that a planned hospital birth is in her best interests, the next legal question that is addressed is how much and what kind of restraint it is permissible to use in making a planned hospital birth happen. We are told that everyone is agreed on the appropriateness of chemical restraint, but not on physical restraint, although this time it is not clear whether that ‘everyone’ includes or excludes the pregnant woman. When the judge discusses the administration of sedation, he notes that it could be administered orally or by intermuscular injection, and he notes that the woman does not like needles but accepts the need for needles (para 25). He does not report on her views on the use of sedation itself, so we have no explicit consideration of her wishes and feelings on the use of chemical restraint.
On the use of physical restraint, the Official Solicitor, the woman’s litigation friend, opposes this unless an emergency arises, because it is more than is necessary for managing the situation. The judge considers the expert opinion given by both psychiatrists that the use of force could have harmful effects (para 28), as well as noting that it would entail “a severe infringement of the mother’s personal autonomy and liberty” (para 30). The use of force “may entrench her agoraphobia. It may damage or impair her bonding with her baby. It may give her long-term flashbacks. It may compromise her attitude to future pregnancies, or her dealings with persons in authority.” As Ms Sophia Roper points out for the Official Solicitor, “these are known risks from the use of force or restraint’ and they should “outweigh the more speculative and statistical risks, if the mother goes into labour at home but may then require an urgent transfer to hospital” (para 28).
Holman J also considers the practicalities that such a use of force would entail. Two personnel trained in restraint techniques would be made ‘discreetly available‘ on the occasion of the planned transfer to hospital. They would be permitted “if necessary, to use to use physical force and restraint to her arms and upper body (but not lifting or handling her by her legs) so as to get her into the vehicle and get her from the vehicle to the maternity area of the hospital” (para 29). Physical restraint would exclude being placed in a prone position, or pressure applied to her diaphragm or abdomen. They would not be permitted to use, and the hospitals did not ask for so-called mechanical restraint, meaning handcuffs and straps or belts, apart from a necessary normal maternity safety belt in the vehicle (see para 29). Holman J says that the mother is clear that she does not want an acute emergency to “arise in the home from which the mother cannot be rescued before some catastrophe occurs to either her or her baby” (para 30). But he does not say what the pregnant woman thinks is tolerable to endure in seeking to avoid this. We are not actually told at any point what her views on the use of chemical or physical restraint are.
In spite of all this, in spite of judicial recognition that the use of force and restraint carries known risks of harm to her, and will be a severe infringement of her autonomy and personal liberty, and in spite of the fact that there is no reason to believe that her labour will progress anything other than normally, she is subjected to an order that would move her into a hospital, have a planned delivery of her baby, take sedation and be physically restrained. Instead of capacity law empowering this woman, it has become a means for subjecting her to the threat of considerable restriction. This forcible restriction would not be legally possible if the legal foregrounding of the diagnosis of agoraphobia had not rendered her incapacitated. But even if legally incapacitated, such an order seems out of step with the Aintree v James oriented judicial trend to frame the determination of best interests by reference to P’s known wishes and feelings. It joins other Court of Protection decisions, such as the recent amputation case (see here and here) in keeping alive a pattern of going against P’s wishes and feelings in certain instances. But it does so in terms which do not even hear from P on the issue of restraint.
The authorisation of restraint in best interests here, including the possible use of personnel trained in PMVA techniques as the care plan indicates, is profoundly troubling. We have no evidence of what P thought about the administration of chemical or physical restraint. It could be that she had expressed a view earlier that she would prefer sedation and even a measure of physical restraint in the form of persons guiding her. It is worrying that we do not know. The possibility of working through some kind of non-binding advance expression of her wishes was there, and could have been engaged in order to make the best interests determination more accountable to her on the restraint issue. Such a process could do a better job of addressing the fraught question of how best to respect the wishes of patients who want treatment that they may later refuse when ill and distressed (see here and here).
Second, the orders (4&5) indicate that the lawfulness of any restraint, which amounted to a deprivation of liberty, was secured by any such deprivation being in best interests, and that any restraint used shall be the ‘minimum necessary’. But these references in the orders are the only place I can find that directly address legal questions about whether the restraint was rights-compliant under the Human Rights Act 1998 as distinct from MCA-compliant. The use of restraint as part of the care for those who are legally incapacitated engages the right to liberty under Article 5 of the ECHR because restraint may breach that right to liberty. A ‘best interests’ legal standard is not sufficient in itself to make a deprivation of liberty lawful, it also has to meet a human rights test of proportionality, by being the minimum deprivation necessary in order to achieve a legitimate objective – care of the person – for the deprivation. But the judgment itself is silent on the substantive question of how this legal standard of necessity is to be met in this instance. Holman J does mention that force is always to be the minimum necessary at para 27, but this goes to the question of how much force to use, not whether to use it or not in the first place. Rather it seems that the question of whether reasonable force is necessary is to be delegated to those who would implement it on the day. The judge does not elaborate any legal standards for deciding the issue. In the event, the question of how much restraint was used is left oblique as we learn through the postscript that “she received 2mg of Lorazepam orally” and that “although initially resistant, she was guided by staff and her family into the ambulance and no restraint was required or used”. As Suzanne Doyle Guilloud tweeted at the time, what do ‘guided’ and ‘received 2mg of Lorazepam’ mean? Especially in the shadow of an order authorising restraint?
Pressuring pregnant bodies, expanding the risk of stillbirth
There are other lines of incapacity cases in the Court of Protection, such as the anorexia cases (Cave and Tan 2017, Clough 2016), where even if the use of force was once authorised in order to feed a patient against her wishes, the trend has clearly become one of respect for the patient’s wishes and feelings even in a context where she might die. The effect of this childbirth case is to say that the prospect of a stillbirth is an even worse scenario than the prospect of an anorexic patient dying. Death through self-starvation is clearly a harm to be avoided as part of best interests determinations in the anorexia cases, but not at the cost of subjecting the anorexic woman to forcible treatment which violates her sense of self and could aggravate her illness. But here stillbirth becomes an outcome which must be avoided at all costs, including subjecting the woman to forcible removal to the hospital, a planned delivery, and chemical and physical restraint.
Clearly foetal life is ‘not nothing’. Not to this woman. Not to the public at large. Not to law, given recognised public interests in supporting pregnancy. Not to an intersectional feminism which has long fought for respect for life’s reproduction. But separating out the legal interest in foetal life, turning it into the pregnant woman’s wish for a healthy child, and enforcing it against the life that gestates and births that foetus into a child, is to do legal violence to the wonder of entangled reproductive lives. There are lots of ways to respect foetal life by supporting pregnant people and not turning foetal life into an oppositional means of degrading a pregnant person’s life.
There is a problem with the way that the cited 1% risk of stillbirth has expanded on the pages of the judgment through the legal moves outlined above. Other important concerns have been minimised as pressure on the pregnant woman is increased with the threat of physical and chemical restraint in non-emergency circumstances and in the absence of the woman’s advance agreement. This case participates in the devaluation of childbirth as reproductive labour by undermining the pregnant person’s knowledge, wishes, feelings and values. By bringing the risk of an emergency childbirth forward in time it squeezes the legal space for a more care-ful and less coercive childbirth in the here and now. By discussing the legal moves through which this process happens perhaps we can redirect them too.
Ruth Fletcher is Senior Lecturer in Medical Law at Queen Mary University of London. She is interested in questions of reproductive justice and you can access her publications here. She tweets @fletcher_ruth
Promoting Open Justice in the Court of Protection 