Editorial Note: We have published two previous blog posts about a covid vaccination case here and here.
In the hearing I observed before Mr Justice Hayden (case number COP 13498835, on 30th April 2021), a decision was made that it was NOT in the person’s best interests to receive the Covid 19 vaccination. All previous judgments seem to have been in favour of vaccination, so this is a significant decision.
Part of my professional role as Deprivation of Liberty Safeguards and AMHP Manager for a local authority involves supporting others to understand and apply the Mental Capacity Act 2005 and I was involved last year in writing guidance for our local care homes on making best interests decisions in relation to the Covid-19 vaccination, so I felt very fortunate to be able to observe this hearing.
It’s rare to have any information about what a Court of Protection hearing is going to be about until the hearing actually starts, and although all of those I’ve observed have been very professionally helpful, this one was of course particularly relevant to me. As I’m not one of the people on the ground having to grapple with best interest decision making about Covid-19 vaccination for particular individuals, it was fascinating to observe this hearing and watch the way in which Mr Justice Hayden considered all the factors in this complex case.
A key aspect of this case is that (unlike – as far as I am aware – all previous cases), the judge had to make a decision in the context of significant opposition from the person themselves (not just their relatives).
Previous published best interest decisions
There have been several published judgments regarding whether or not it’s in a person’s best interests to receive a vaccination for Covid-19.
The three most widely known are two before the Vice-President of the Court of Protection, Mr Justice Hayden: E(Vaccine)  EWCOP 7 and SD v Royal Borough of Kensington and Chelsea (2021 EWCOP 14. and a third before Mr Justice Butler Re C  EWCOP 19. In all three cases, the person concerned was living in a care home, lacked the relevant decision-making capacity, and it was family members – rather than P themselves – who opposed vaccination. The judgement in each case was that it was in the person’s best interests to be vaccinated.
In his conclusion in the ‘SD’ judgment, Mr Justice Hayden states:
What it is important to emphasise here, as in so many areas of the work of the Court of Protection, is that respect for and promotion of P’s autonomy and an objective evaluation of P’s best interests will most effectively inform the ultimate decision. It is P’s voice that requires to be heard and which should never be conflated or confused with the voices of others, including family members however unimpeachable their motivations or however eloquently their own objections are advanced. (para 33, SD v Royal Borough of Kensington and Chelsea (2021 EWCOP 14)
The person at the centre of this case
The person at the centre of this case, S has advanced dementia and (since 2019) has been living in a large care home of currently 79 residents. She is subject to a Standard Authorisation under the Deprivation of Liberty Safeguards (DoLS) and is appealing this via s.21A proceedings. The issue of vaccination arose in the course of these proceedings as a discreet issue and it is only this issue which was before the court today.
When the GP visited the care home, S declined the Covid-19 vaccination and has done so repeatedly. S’s resistance to vaccinations appears to be longstanding, with 4 recorded occasions when she has explicitly refused the flu vaccination since 2010 (and no record of her ever having received it).
S never married, does not have children, and other than someone who appears to be a cousin, ‘T’, she has no friends or family left to support her.
In her mind, S has reverted to life in the late 1940’s, when she was living with her parents and working as a secretary in the Lyons cake factory. At 4pm every afternoon during her working life, a loud horn sounded for workers to exit the building. And now at 4pm every day, S puts on her coat, picks up her handbag and announces she is done for the day and is off home, where her mother will have her tea waiting for her.
In the opening summary, S was described as a lady who does not appear to need a great deal of support: she is “feistily independent”, “extremely stubborn” and someone who could become very “fixed in her ideas”.
It appears that S read a newspaper article in 2019 which she interpreted as saying most medical treatment and/or vaccinations were likely to be injurious rather than beneficial and from that point on has resolved not to cooperate with any medical treatment at all, to the extent of becoming physically aggressive when a doctor tried to examine a rash on her leg. On another occasion she told carers she had “wiped the smile off the face” of a psychiatrist who tried to speak with her.
She has consistently resisted offers of the Covid-19 vaccination and has been assessed by her GP as lacking capacity in respect of this decision, on the basis that she cannot retain the relevant information and struggles to weigh it.
Best interests, vaccination and restraint
At the beginning of the hearing, counsel took different positions as to whether or not it would be in S’s best interests to be vaccinated.
S’s own representative, Rebecca Hancock, said she was seeking the court’s guidance and had no definitive position.
Amelia Walker representing the CCG said that it is in the best interests of everyone, and in particular residents of care homes, to have the vaccine and that this would also apply to S. She also reported that administering the vaccine would likely be straightforward and the GP could be assisted by two community mental health trust nurses trained to provide physical restraint. She said, “the GP’s view is that physical restraint wouldn’t be necessary – but that they could provide ‘light touch support’.” Mr Justice Hayden asked, “is that a euphemism for gentle restraint?” and added, “I don’t understand the GP saying restraint wouldn’t be needed because last time she was all for giving someone a kicking.” (In fact, it later turned out that the GP report said that restraint would be needed.)
Tony Harrop-Griffiths, representing the Local Authority, said it was a “difficult balance” but that he thought it was NOT in her best interests to have the vaccine.
There was very little known about S’s life story and her views when she had capacity, so Mr Justice Hayden sought what information he could – including consideration of the views of S’s parents as an indication of how she was brought up. A statement by her cousin T, told us that S’s father was a man of medicine and would very much have encouraged her to take the vaccine, but her mother was a spiritualist and held beliefs outside those that are considered normative.
Mr Justice Hayden was keen to hear from those who knew S now, and so (at short notice!) the team leader for the unit S lives in and the care home manager came on the video platform for 40 minutes. In Hayden J’s words they “brought her character, personality and temperament” into his court room and “hugely impressed” him with their “compassion and care”.
The team leader talked with fondness about S being “a very private lady”, “very independent”, “very strong willed”, and “pleasant on a one-to-one basis but someone who struggles to be on good relations with other residents”. She won’t allow staff to support her (“I don’t need help. I’m not stupid. Leave me alone.”) and doesn’t like to be touched at all (“she finds that very off-putting”). Refusal of medication for her blood pressure and cholesterol some years previously, led to attempts to covertly administer these to her in her tea, but these attempts were thwarted by her keen sense of suspicion!
Mr Justice Hayden explained he’s been asked to consider the option of a GP and two mental health nurses providing ‘light touch support’ to administer the vaccine, to which the manager replied “I hope they know kung foo!”, adding, “there will be no light touch about it, she’ll require full restraint to administer the vaccine, and it will be a difficult situation”.
Mr Justice Hayden explained to the staff he was “trying to balance risk of death against trying to protect her dignity, autonomy, who she is, her pride. She’s in a vulnerable group. That’s the dilemma the court’s being presented with”.
It had also been suggested by an independent expert that S might be given a sedative such as lorazepam: while this wouldn’t remove the need for physical restraint, it would significantly weaken her resistance. Yet it was unclear how this could be administered given it would arouse immediate suspicion if attempts to covertly administer were made. Staff described S as “like a sniffer dog” and as she prepares her own tea or juice, if she were given a cup of tea – she would know there was something wrong.
Care staff had initially felt S would need to go to the GP surgery for the vaccination, but given that she is someone who never leaves the care home and becomes “overwhelmed” if she goes past the care home’s reception area when taking a walk, it was acknowledged that trying to get her into an ambulance would be distressing, both for S and the other residents living on the unit. There was a suggestion of vaccinating her either in her bedroom or in the office where she speaks with her solicitor and Relevant Person’s Representative. Care staff however did not wish to be present, fearing erosion of the trust carefully built up between S and some of the staff. One said, “I don’t think it would be right for me to be in the room when she’s vaccinated. She would look to me for help and I wouldn’t be able to help her.”
The judge gave everyone a short break to reflect on what they had heard and then they returned for closing submissions.
Having heard the evidence, Rebecca Hancock now believed that although it’s an extremely delicate balance in this case, it’s not in S’s best interests to have the vaccination. She said that S has very few relationships of trust, but has a relationship with some staff which would be put at risk by vaccination against her wishes.
Amelia Walker, counsel for the CCG remained of the view that it was in S’s best interests to have the vaccination – although the argument put forward was from a ‘general view’ on the basis that it’s in the best interests of everyone to have the vaccine and particularly those who are vulnerable and in care homes. She was swiftly reminded by Mr Justice Hayden that you need to look at the individual’s particular circumstances: “That’s not to engage with the relevant law. You look at the individual – not just the medical but right across the full scope of her interests and welfare”. Amelia Walker also suggested that if S is not vaccinated she may find her activities restricted, e.g. not being able to go on trips (but, said the judge, she doesn’t anyway!).
Tony Harrop-Griffiths maintained the same position as he had initially presented; the Local Authority does not believe it is in S’s best interests to be vaccinated. He now gave four reasons: (1) because physical restraint would be required (even if sedation was also used) and that would lead to a breakdown of trust; (2) because there is already a history of lack of engagement with medical professionals, so evidence that she has a long-standing objection to medical intervention; (3) bearing in mind the wider picture that there is a s.21A challenge in progress, another (smaller) care home has been located, and they are willing to accept her unvaccinated, so that potential move is not a reason to advocate vaccination; and (4) since S does not engage in community activities or leave the care home, that too is not a reason to advocate for vaccination.
In considering the factors in this case, Mr Justice Hayden spoke of how there is little doubt that if S were to be infected, she at very high risk or serious illness or death.
Although all but one of the care home residents have already been vaccinated, more than 20 of the care home staff have declined vaccination – most of those because they “object in principle to doing so”. Mr Justice Hayden said, “That is their right. But with rights of course go responsibilities. They go into the home every day. They carry risk of infection.”
The care home staff “do not need to be told how awful this insidious virus is” because they “have seen it at first hand” during the first wave of the pandemic when 27 of their residents died.
He said, “there is no doubt at all that it is in S’s clinical best interests to receive the vaccine.”
But “analysis of best interests requires scrutiny of welfare in the widest sense not merely medical but psychological and emotional”. He quoted Baroness Hale in Aintree:
The most that can be said, therefore, is that in considering the best interests of this particular patient 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; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be. (para. 39 in Aintree University Hospitals NHS Foundation Trust v James)
Hayden J noted how “S expresses strong opinions regarding medical treatment but specifically to the vaccination” and “her compromised capacity does not mean her strongly expressed wishes are rendered nugatory” (of no value or importance). “If she were capacitious and refusing this vaccination that would be the end of it, as it is for the carers in the home who decide not to have it.”
Given S’s strong opposition to vaccination, treating her would involve restraint – either with or without sedation.
“I am not at all attracted to the restraint simpliciter or sedative restraint option. S has very few effective interpersonal connections with the outside world. She has no doubt for her own survival had to forge some level of trust for those who care for her. This is so intrinsic to her wellbeing that to my mind it requires to be protected vigilantly. She would resist, I have no doubt, any restraint – and it would create a traumatic and disturbing scenario, for her, for the carers and the other residents”. (Hayden J)
“Right at front of this case and in this care home, is the scarring of loss of lives and painful deaths. The real determination is to protect S from that. But though much of her cognitive function may have gone, her autonomy – and her own sense of it – not merely continues but flourishes, and she guards it carefully. Ultimately in my judgement, it is that which requires to be respected and is ultimately determinative of this issue[…]. So for all these reasons, it is ultimately my clear conclusion that it is not in S’s best interests for her to receive the vaccine.”
This is the first judgment I am aware of where the person themselves (rather than their family, on their behalf) was refusing the vaccination and in this case, clearly quite strongly.
Although I know the potential consequence for S of contracting Covid-19 might result in the end of her life, for me, the thought of this 85-year-old lady being physically restrained in order to administer a vaccination that she so very clearly did not want, was just terrible. It would have surely damaged her fragile relationship with care staff irreconcilably, not just in her current care home but going forward to the new home if she moves there.
It was also really difficult for me to justify vaccinating S against her wishes, when the care staff and relatives visiting the home – who will be the ones likely to bring the virus in – retain the ability to choose whether or not to accept it themselves.
I really wasn’t sure which decision Mr Justice Hayden was going to make as I sat through the hearing. Details of all possible options were closely examined, especially the option of using a sedative which was discussed in some depth, so I was really quite relieved when he delivered the judgment and I absolutely agree with his decision and with the reasoning behind it.
I think the most important learning for me from being able to observe this hearing, is the way it has again, allowed me to watch the Mental Capacity Act 2005 ‘in action’ and understand how a senior High Court Judge, in this case the Vice President of the Court of Protection, works through the process of reaching a best interests decision.
I’m also able to take away with me some ideas that I can incorporate into my own practice when completing best interests assessments myself in future. For example, in this case, as there was no information about S’s past wishes, feelings, beliefs and values from when she had capacity, Mr Justice Hayden considered what S’s parents’ views might have been as an indication of how she was brought up and therefore what factors might influence her decision. While I know my own views of the world are very different from those of my parents, in the absence of any other information I can now see how this might be helpful in some situations.
This hearing also allowed me to observe playing out in action, how respect for and promotion of S’s autonomy and an objective evaluation of her best interests informed Mr Justice Hayden’s decision. Personally, I would have loved to have seen S express her views to Mr Justice Hayden in person and I don’t know whether she was invited to attend, or even aware that the hearing was taking place. But even without her physical presence, I do feel S’s voice was most certainly heard and her wishes and feelings – which were articulated so clearly by the care home staff who knew her – were clearly of central importance in Mr Justice Hayden’s decision.
In my experience, there continues to be a great deal of misunderstanding of the Mental Capacity Act 2005 within both health and social care, even though the Act has been in force since 2007. This is why remote access to these Court of Protection hearings is so very important and why I’ve been a supporter of the Open Justice Court of Protection Project. It really does such wonderful and important work in continuing to educate us all. I would encourage anyone reading this blog who has not yet taken up this unique opportunity to observe a Court of Protection hearing, to please try to make time for this while hearings are still available to view on line!
Astral Heaven is the Deprivation of Liberty Safeguards and AMHP Manager for a Local Authority. She tweets @AstiHeaven
 To learn more about these cases (and the broader legal framework for best interests decision-making about vaccination), you can listen to a 30-minute podcast on “Vaccine hesitancy and the Court of Protection: Who decides?”, in which Rosalind English interviews Amelia Walker (who represented the CCG in this case).
My OJCOP colleague, Celia Kitzinger, and our regular contributor, Claire Martin recently observed a challenging case before the Court of Protection concerning ‘ZA’ – a woman with Schizophrenia and diabetes. Proceedings followed an application by the NHS Trust from which ZA has been receiving treatment for severe infections and other complications arising from her diabetes, to determine whether ZA lacks the capacity to decide whether or not to consent to the amputation of a leg, a treatment proposed by her treating clinicians; and, in the event she is deemed to lack capacity, whether amputation would be in her best interests. You can read in detail the facts of the case, and observations and commentary on it in Celia and Claire’s blog here. I did not observe the proceedings, but in this short piece I wish to share my response to the case (as I understand it), and my perspective on ZA’s position.
As a disabled person who has been a fulltime wheelchair user for the last four years, since the age of 33, and whose life has been changed almost beyond recognition as a consequence of the progressive impact of my multiple impairments, ZA’s apparent position – that she doesn’t “want to be in a wheelchair” as she’s “not that person” spoke to me and touched more than a few nerves.
Why is this a best interests decision at all?
My first reaction to the case is one of anger and frustration that ZA has come to find herself in a position where a fundamental decision about her health and her future has been taken out of her hands and made by a judge in consultation with medical professionals.
ZA has a history of Schizophrenia and associated fluctuating capacity, and the impact of her diabetes on her leg did not occur overnight. Indeed, it seems that ZA has repeatedly voiced her wish not to have her leg amputated over a period of years – both as a refusal of consent (when capacitous) and as an expression of values, wishes, feelings, and beliefs (when apparently lacking capacity). I am given to understand that ZA experiences ‘flattened affect’ as part of her Schizophrenia, which may be expected to dampen her response to her circumstances, but her views seem consistently held and expressed, Why, oh why then, did no one involved in her treatment suggest she set out her refusal in an Advance Decision to Refuse Treatment (ADRT), especially given her Schizophrenia? This would have enabled a disabled woman to ensure that her ‘voice’ would continue to be heard and respected in the event that she was deemed to lack capacity at the material time that a decision needed to be made about her leg. I find the fact that this opportunity was clearly not made available to her unsurprising but tragic. (I have written here about my own research on ADRT and disability, and discuss this in an interview with barrister, Alex Ruck-Keene here).
Becoming ‘that person’ (following a best interests decision)
Now that the decision is a ‘best interests’ one, I hope in the strongest terms that ZA’s wishes are upheld. I say this firstly because my general world view and personal ‘hierarchy of values’ places a strong emphasis on personal autonomy and the rights of individuals to make their own choices concerning their bodies and their lives – a position rooted without doubt in my experiences as a person disabled from birth. But I have a more practical, pragmatic reason for taking this view.
Having been disabled since birth, I have been a fulltime wheelchair user for about the last 4 years (since I was 33), and my life has been completely transformed by the impact of the progression of my impairments. I know that there is a general tendency (among both abled and some disabled people) to talk about “getting used to” and “accepting” acquired impairments, or the progression of congenital ones – and there is obviously a body of sociological literature on these phenomena. But my ‘real life’ experience is that these processes are hugely complicated – with ups and downs and lots of complex, conflicted feelings and responses. And, more relevant to ZA’s case (with the amputation ZA’s life expectancy is 5-10 years) these processes of adjustment take time.
Unlike ZA, I have always been relatively positive about my chair, and I haven’t ever seen myself as “confined” to it, or “bound” by it, or “defined” by it. I’ve even written poetry about how it changed my life for the better: life in our society as a wheelchair user can be tough, but life without one when one has chronic pain, fatigue, and mobility limitations can be totally, utterly unbearable. But even so, I have sometimes HATED my body as it is now. Sometimes I still do. It’s like being stuck in a rusty cage. And the thing about hating your body is that there is no escape. You cannot go anywhere to snap out of it and distract yourself. And along with this, learning how to accept and work with support is a process too. I know I have struggled – sometimes less than graciously – and sometimes I have been quite difficult to help as a result.
Given the reactions of abled people to my experiences, I sense that many people don’t really understand these processes of adjustment, or perhaps much about living a disabled life in our society more generally – the time it takes to access support and get things right. The endless bureaucracy, and the energy it takes to do the ‘job’ of being disabled. What happens when vital equipment breaks. How much of our physical world remains totally inaccessible if you get around on wheels rather than feet – how much you lose as a result, and how much you grieve. Four years into this process – as a relatively positive wheelie – and I’d say I am just about getting my head around what it means to be this person and to be living this life, a life I certainly did not expect to be living. And this remains very definitely a work in progress with ‘good days’ and ‘bad days’. Remember that ZA is expected to live 5-10 years following amputation.
So how would it be to have these experiences, and these feelings ‘forced’ on me as a consequence of a best interests decision? I obviously cannot (and would not wish to) speak for ZA. But for me it would be torturous. I cannot imagine the impact on my mental health, and how this would affect how I would engage with those around me and those supporting me. I have a strong desire later in my career to undertake longitudinal research around the consequences of best interests decisions, and this sort of situation highlights precisely why. For me, navigating this life that I did not expect to be living is an ongoing challenge – and one that seems surprising to many abled people in my life. I cannot imagine how it would feel to have got here via a best interests decision that did not reflect my expressed wishes.
I would hope that if a best interests decision is made on ZA’s behalf, it reflects her wishes. I would also hope that it takes into account the ‘voices’ of disabled people and organisations in situations more analogous to ZA’s to add an accurate representation of ‘adjustment’ and ‘acceptance’ to the ‘balance sheet’ of a best interests decision.
Gill Loomes-Quinn is co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project. She tweets @GillLoomesQuinn
By Celia Kitzinger with Claire Martin, Thursday 29th April 2021
The person at the centre of this case (COP 13718293) is a 53-year-old woman we can refer to as ZA. She has been in hospital for the last 25 weeks with a chronic non-healing diabetic ulceration on her right foot and bone infection (osteomyelitis). There is no medical dispute but that, from a purely surgical perspective, amputation is the right thing to do.
ZA is adamant she doesn’t want amputation of her leg. She told the agent instructed by the Official Solicitor: “if I die, I die. We all die sometime”. When talking about people who have only one leg, she said, “I don’t want to be like that” and visibly shuddered. If her leg was amputated against her will that would be (she said) “horrible” and she would be “angry and distressed”. She repeatedly says that she wants to leave hospital and go home.
Without amputation she’s likely to die within 6-12 months, but would be able to return home to her husband and adult son – although there is some concern about “revolving door” or “cyclical” readmissions to hospital with sepsis and complications, which is what has been happening recently (11 hospital admissions since 2016). She’s not in any pain because she has diabetic neuropathy (loss of sensation in her feet), and she is able to move around – albeit with difficulty and contrary to medical advice – using her stump and holding on to furniture. She is refusing a wheelchair.
With amputation she could live 5-10 years or more (depending on her level of compliance with diabetic medications, which is variable) and she’d need a lot more support with activities of daily living. It’s not certain she’d be able to return home after surgery, since this would depend on the level of care that she’d need. She might have to go to supported living. It’s unclear whether or to what extent she’d be able and willing to use a wheelchair. Her current view is: “I don’t want to be in a wheelchair. I’m not that person.”
If ZA has the mental capacity to make her own decision about amputation then the court cannot decide on her behalf: she would be free to make her own choice in accordance with the well-established principle of self-determination. Competent adults have the right to refuse medical treatment – for good reasons, bad reasons, or no reasons at all – even if that refusal will obviously be followed by their death.
There is a presumption of capacity in law (s. 1(2) MCA) and this is especially important for people, like ZA, who have impairments in the functioning of their mind or brain. ZA has chronic schizophrenia, cognitive impairment secondary to her schizophrenia, and (due to her infection) delirium. But mental impairments and mental incapacity are not synonymous – as famously demonstrated in the classic case of Re C  1 All ER 819, a 68-year-old man with chronic paranoid schizophrenia who developed gangrene in his leg and was found to have capacity to make the decision to refuse treatment.
Some previous assessments, dating back to 2019, did find that ZA had capacity to make her own decision – and it was because she has been deemed capacitous to refuse amputation (and did refuse) that surgery has not been done before now.
So, the question before the court was first whether there was sufficient evidence to displace the presumption that ZA has capacity to make her own decision about amputation, and second (if she is deemed to lack capacity) whether or not amputation is in ZA’s best interests.
The application was brought by the Trust – with Helen Mulholland as counsel – who sought a declaration that ZA lacks capacity to make her own decision about amputation, and that amputation is in her best interests.
ZA’s family (her husband and son) are not parties to the case but have been fully consulted (and her son was present in court throughout). They had initially opposed amputation, at a best interests meeting in late 2019. They are still very concerned about the impact of forcing her to have amputation against her will and worried about the sense of “betrayal” she might feel, but they do now support the Trust’s application.
Emma Sutton acted for ZA as litigation friend (via the Official Solicitor). Her position at the beginning of the hearing was that “the Official Solicitor is unable at this stage to agree with the application before the court and will consider her position following the oral evidence”.
We didn’t meet ZA or her family in court. The hearing began an hour after the listed time because the judge spoke with ZA before members of the public were admitted. We were also excluded from court for some time after the lunch break until ZA’s husband and son had given their evidence, since they had asked to do so in private.
The hearing took place over two days (22nd and 23rd April 2021) before Mr Justice Cohen. As members of the public, we heard evidence from five doctors: (a) the treating diabetologist (b) the consultant surgeon who would actually carry out the amputation if it was authorised by the court (c) Mr Scurr, a consultant surgeon acting as expert witness (d) Dr Rebecca O’Donovan, a psychiatrist acting as expert witness and (e) the treating psychiatrist. (The Transparency Order permits naming of the independent experts but we cannot use the names of the treating clinicians.) The advocates summarised the family’s evidence in their closing submissions. What follows is not a complete report of what everyone said, but rather what struck us as salient or interesting. (Text is by Celia except for the section about Dr Rebecca O’Donovan, which Claire wrote.) Witnesses addressed questions about capacity and about best interests, as well as technical medical issues we have largely omitted here (e.g. why above-knee rather than below-knee amputation).
(a) Treating diabetologist
He described his involvement with ZA over time and was clearly concerned to convey that he did not think she had the mental capacity to make her own decision about amputation. In one conversation with her, he said, “I explained that without surgery she would die and she told me clearly that she did not want to die. She looked up at me and made eye contact and stated, ‘I don’t want to die’”.
This exchange took place under cross-examination from Emma Sutton:
(b) Consultant surgeon
Despite the Trust’s view that amputation was in ZA’s best interests, not all of the individual clinicians in the Trust were of this view. The surgeon who would actually carry out the amputation did not, in fact, agree. “The quality of life is not one she’d want,” he said. “She could go on for any number of years, and whether she would thank us for that I don’t know. In his view, sending her home with an advance care plan (to prevent ‘revolving door’ readmissions for future sepsis) would be preferable.
He was, however, willing to carry out surgery if the court made a best interests decision that it should be done, and “technically it’s not a difficult issue at all to remove the leg”. There was some concern about restraint in order to get her into theatre at which point this witness, rather alarmingly, said that he would not plan to tell ZA in advance that she was going to have her leg amputated.
The surgeon also, said, on several occasions, that he didn’t feel ZA had any “joy” in her life – and he also worried about the burden for her family.
(c) Mr Scurr, expert witness, consultant surgeon
This expert witness was also an expert witness in an earlier amputation case – Wye Valley NHS Trust v Mr B  EWCOP 60. In that case, Mr Justice Peter Jackson decided that it was unlawful to amputate Mr B’s leg in the face of his (non-capacitous) opposition to amputation – despite the fact that Mr Scurr said that Mr B would be likely to die within a few days without amputation. It was pointed out to him by one of the lawyers in this hearing: “You expected him to succumb within a week without amputation and I think he lived 18 months.” Mr Scurr explained that this was because, in Mr B’s case, he had made his diagnosis based only on the medical records. He had, however, examined ZA and so was more confident in his view that her life expectancy without amputation would be no more than a year, with the proviso that “if she got a serious infection that didn’t respond to antibiotics she could be dead within days”.
“There is no prospect of the ulcer healing – ever. It’s difficult to manage. It smells. It will get infected and will eventually cause systemic infection. So clinically amputation is the right thing to do.”
He was clear, however, that although amputation was “clinically … the right thing to do”, this was not the same as a best interests decision for ZA. “Surgery should not simply prolong life, it should enhance it”. A best interests decision needs to take into account the person’s own wishes. “When I went to see her,” he said, “she was quite lucid. She knew where she was and what was happening, and she knew she didn’t want an amputation.”
Mr Scurr answered some questions from the judge related to the problem of “revolving door” admissions to hospital if the decision was made to allow ZA to return home without an amputation. He said: “it would be wrong to take her to intensive care – it’s a terrible place to be. She’s made the decision not to go down that route. We have patients when they’ve had enough, they’ve had enough”. He suggested there should be no active treatment. “When she starts to go downhill, encourage her to stay at home or move to a hospice until she dies.”
“We are now in a situation where we can prolong life almost indefinitely. The question must be asked: is this the right thing to do? At the end of the day, we have a responsibility to the patients – to be kind to them, and to take into account their feelings and their relatives’ feelings.”
At the end of his evidence. he said to the judge, “I’m sorry to leave you with such a problem.” The judge replied, “That’s very kind of you, thank you. It’s my job”.
(d) Rebecca O’Donovan, expert witness, psychiatrist. By Claire Martin
I attended only Day 2 of the hearing (23 April 2021) ) and was able to observe witness statements from Dr O’Donovan, forensic psychiatrist and expert witness, as well as the treating psychiatrist for ZA.
Dr O’Donovan was an expert witness for the Official Solicitor and she centred her evidence on the past, current and potential future mental health of ZA. It was clear, as noted, that ZA has experienced, over many years since a teenager, varying levels of mental ill-health and hadn’t functioned independently for, I think, at least fifteen years (we were told about episodes of significant distress since 2008).
Turning her attention to the possibility of amputation, Dr O’Donovan said she was “concerned about gaps in the care plan”. She was referring to the treating team’s plan for the process of informing and discussing with ZA that the amputation would go ahead (if this were to be the judgment), and the possibility of restraint and how this would be managed. She expressed a concern about cardio-pulmonary arrest being a risk if restraint was not handled correctly: “It would need a lot of thinking about: who? How? How will hands be put on? Graded stages”
She also talked about the potential impact on ZA, were she to feel that her family had ‘colluded’ with the plan against her wishes. Her family are her closest relationships.
However, Dr O’Donovan also expressed a view, perhaps not dissimilar to ZA’s treating surgeon’s, that, if the judge authorised amputation, then not a ‘huge’ amount of discussion ‘would be best’, because “telling her long in advance could cause distress”. Dr O’Donovan had clearly looked meticulously at ZA’s historical mental health records (such as Mental Health Act detentions) and was able to draw on those to hypothesise about ZA’s likely reaction to being subjected to treatment that she did not want.
Dr O’Donovan was very clear that ZA, over the years, has stated clearly (including when deemed to have capacity for this decision) that she did not want to have an amputation of the leg. She explained that, although ZA has cognitive impairment secondary to her diagnosis of schizophrenia, she would clearly “know that her leg is missing and the emotional and psychological impact of that should not be underestimated”. She offered a counter-view that, “due to the negative symptoms of schizophrenia … she has blunted affect … schizophrenia might protect her [from emotional distress] to some degree”. She based this latter view on the fact that, when ZA had had some toes removed, she ‘settled quickly’ despite having been very clear that she did not want them removed. The judge seemed not wholly convinced:
“We are talking about something that is so different. Her toes are one thing – how can we say that, because she wasn’t so distressed after her toes, she would not be distressed by [the removal of] her leg.”
Dr O’Donovan’s response rested on what she described as ‘significant negative symptoms of schizophrenia’ including marked lack of motivation and apathy. I wondered about this – ZA has experienced this mental health condition for a long time, though has currently been in hospital for 8 months and has a delirium. I was not sure how she was functioning in terms of her engagement with the world over the past several years, but I found myself thinking that her current inpatient hospital experience could account for, or at least contribute to, her negative symptoms, as much as her mental health diagnosis.
When discussing ZA’s understanding of death – in relation to her capacity to understand and weigh up the decision about amputation – Dr O’Donovan said:
“She does have some insight into death. For me, she’s talked about seeing people with one leg and wouldn’t want to live with that. She can’t provide depth though – what would be good or bad about that. Does she connect to the finality of death? The impact on relationships? I don’t get the sense that she’s thought this through and worked through those endings. Her capacity to do that is very limited.”
It suddenly struck me that ZA, who is currently in hospital with a delirium and infected bones of her foot, is, seemingly, being held to a much higher bar than the rest of us would be (when our capacity is not in question) in terms of needing to demonstrate an understanding of what death means to her. This feels worrying to me – at a time when we are least likely to be able to demonstrate (our previous, capacitously held, wishes) that we can understand, retain, weigh up and communicate a decision about self-determination, we need to be more able to do so. It does seem to be a huge missed opportunity that, over the years, clinicians have not discussed an ADRT with ZA when she has been assessed as capacitous to refuse amputation.
Dr O’Donovan also talked in depth about potential risk of depression and suicidality, should the amputation go ahead against ZA’s wishes – and described a situation where, should this come to pass, ZA would ‘not be able to act on them’. Counsel for ZA, Emma Sutton incisively noted: “Having suicidal thoughts and not being able to act on them – that could be very hard for her”.
This was discussed further in relation to ZA needing to use a wheelchair after an amputation and how she might feel about that and adjust to it. Dr O’Donovan explained that ZA would find it very hard to learn how to operate a wheelchair – she described ZA’s results on the Addenbrooke’s Cognitive Examination (a cognitive screening tool developed principally for use in the differential diagnosis of dementia) as being ‘poor’ for visuo-spatial functioning. Over the course of her evidence Dr O’Donovan referred to ZA’s cognitive function as ‘declining for many, many years’. Helen Mulholland asked Dr O’Donovan if she had looked at cognitive assessments from before. I got a bit lost here. Dr O’Donovan reverted to discussing ZA’s negative symptoms of schizophrenia, rather than cognition per se (although of course, at any one assessment, they will be interlinked).
ZA had a MMSE (Mini-Mental State Examination) in 2011 and got a score of 22/30 suggestive of ‘mild cognitive impairment’. Scores below 25 do suggest possible cognitive impairment, and warrant further examination. MMSE is a widely used, very short, screening test (it is used less often now since it has become copyrighted). In a meta-analysis of its utility in 2009, here, the authors concluded: “Provisionally, the MMSE had very limitedvalue in making a diagnosis of MCI [Mild Cognitive Impairment] against healthy controls.”
It’s a blunt instrument, and can be helpful in providing a pointer to the need for further, detailed neuropsychological testing and clarification of cognitive abilities over time. I am not sure whether ZA has had more extensive neuropsychological assessment over the years. It is likely that she will have repeated MMSE and/or Addenbrooke’s assessments. Even though we did not have reports of more extensive testing, the expert witness and the treating clinician both stated that ZA’s cognition had declined over the past decade or so.
Dr O’Donovan completed the Addenbrooke’s assessment with her this year, though we did not hear about the overall results. That test in itself is a screening test, covering domains of attention, orientation, memory, language, visual perceptual and visuospatial skills. She indicated that ZA did not do well on the test – though she also has a delirium which will mean that it is not possible to accurately assess her ‘true’ cognitive abilities , as her treating psychiatrist later stated in her testimony:
“I am not able to say how much delirium is contributing to her cognitive impairment and to what extent cognitive impairment is reversible. Following each episode of delirium, there can be long-term consequences for cognition. This episode is long. It is difficult to accurately assess [ZA’s] understanding and cognition …. If the delirium could be reversed then we could assess the long-term consequences of the delirium on her cognition.”
So, it’s a complex picture in terms of ZA’s ‘true’ cognitive status – but it is certain that delirium makes it impossible to accurately assess right now. ZA’s treating clinician was clear that, should the delirium clear, ZA’s cognition could improve. However, the medical view seemed to be that the only way her delirium would clear would be via amputation.
This is arguably academic though. Over the years ZA has been very clear about her wishes: she does not want her leg amputated. I did feel, at points, that there was a hint of a suggestion that, because someone has a diagnosis of schizophrenia, there is automatically a question mark hanging over whether that person can reasonably hold any view about amputation (and presumably other decisions too)– though this hint would perhaps only be put to the test if that person were to disagree with the clinical team’s view. I might be wrong about this – though as a society, I would argue that we tend to the paternalistic when it comes to self-determined health decisions.
(e) Treating psychiatrist
Given the fact that the Trust surgeon had apparently planned to amputate ZA’s leg without informing her in advance, this was the first issue the treating psychiatrist (who had known ZA since 2018) was asked to address. She said, “To me it feels very inhumane not to tell her that surgery is about to happen. It doesn’t sit comfortably with me as a human being seeing her as another human being.”
Although both the treating psychiatrist and Dr O’Donovan agreed that ZA lacks capacity to make her own decision about amputation, they disagreed about what causes this lack of capacity: for Dr O’Donovan it is the cognitive deficits associated with ZA’s schizophrenia, whereas for the treating psychiatrist it’s the delirium associated with the infection from her leg. Nonetheless, the treating psychiatrist saw ZA as lacking capacity:
“I’m not sure she understands the finality of death. Once you start that conversation about dying, it’s very difficult to explore with her what she thinks and feels about that. But whenever we have conversations about her life and her future there’s no caveat like “I might not be around by then”. For a patient who understands that death is final, you’d expect that to trickle into conversation.”
Asked about whether or not she thought amputation was in ZA’s best interests, she described it as being a decision “on a knife edge”.
Members of the public were excluded from court while ZA’s husband and son gave their evidence (they didn’t want us there), but in their closing submissions the two barristers gave some information about what they had said.
“The family are torn. They would like to prolong P’s life. They would like her to live as long as possible, but they don’t want her to suffer an additional mental health burden and they don’t want her to suffer feelings of betrayal. They are finding it very difficult. But on balance their submission tips in favour of amputation.” (Mulholland, counsel for the Trust)
“ZA’s family have an entirely understandable but irreconcilable wish for her to live as long as possible and for her to be happy. I was struck by the focus from the family on wanting her to be happy.” (Sutton, counsel for ZA via the Official Solicitor).
Emma Sutton also said the Official Solicitor was concerned about ZA feeling “betrayed” by her family who she may see as having colluded with doctors forcing her to have her leg amputated against her will. She pointed out that ZA’s son had raised this concern on a number of occasions.
A best interests decision should have been avoided
By the end of the hearing it seemed fairly clear that the judge will declare that ZA lacks the mental capacity to make this decision for herself. Plenty of evidence was provided by the witnesses to rebut the presumption of capacity – although whether this is caused by delirium or by progressive cognitive deficits is disputed. Intervening into the closing summary from Helen Mulholland as she rehearsed the evidence for ZA’s lack of capacity, the judge said that, having talked to ZA himself and formed a “layman’s opinion” of her capacity in relation to this decision, “I think you’ll find you’re pushing on an open door”.
Although assessments since November 2020 have found ZA to be lacking capacity, her position on amputation remains as clear as it was when she was deemed to have mental capacity to make this decision. If her foot were amputated “then it’s not worth living”. She would “rather die with her foot and dignity than have the amputation”.
So, the decision is a best interests one, meaning that ZA’s views are taken into account but are not (as when she had capacity) determinative.
From my perspective, listening to ZA’s history of engagement with the medical professionals involved in her case, this is quite simply a completely outrageous position for ZA to be in. It could and should have been avoided.
In her closing summary, Emma Sutton said: “It is somewhat regrettable that ZA did not make an advance decision to refuse treatment relating to the amputation If she’d done that, this application would not have been necessary.” I consider “somewhat regrettable” to be an understatement under the circumstances. Doctors have been discussing amputation with ZA for nearly five years and she has repeatedly clearly and consistently refused it. Earlier refusals were made at a time when she was deemed to have the mental capacity to make her own decision: in 2016, again in 2019, and twice in 2020. Given ZA’s diagnosis of schizophrenia, and given its predictable effects on her cognitive capacity in future, combined with the obvious risk of delirium from infection in the future, it must have been apparent to them, with a modicum of thought, that there would come a time when ZA would lose the mental capacity to make her own decision about amputation. This is exactly the sort of situation in which clinicians should be supporting people to make advance decisions to refuse treatment (ss. 24-26 Mental Capacity Act), so that loss of capacity does not reopen the whole question of whether or not treatment should be provided. It is utterly unacceptable to simply wait for a capacitous patient to lose capacity and then to attempt to enforce upon them the very treatment they refused when they had capacity to do so. And although Emma Sutton’s formulation of the problem seems to put the onus on ZA, it is of course the treating clinicians upon whom the responsibility lies. They should have alerted her to the possibility of making a legally binding advance refusal of amputation, and supported her to do so – or ensured that she had access to people who could so support her. (Note: Readers alerted by this blog to the importance of advance decisions refusing treatment for themselves or those they care for can get full and accurate information about how to make these advance refusals from the charity, Compassion in Dying which also provides an online template and a telephone information line.)
Official Solicitor – friend or foe
I’ve been concerned about the role of the Official Solicitor for a long time. It is often the case that the litigation friend (usually the Official Solicitor) appointed to represent the person who lacks capacity argues the opposite of what that person says they want. We’ve published several blog posts based on our observations of cases of this kind – explored most starkly in the story of “Mr G” (here) who wanted to leave the brain injury unit in which he was detained, and return home. He told the court:
“I am incarceratedin a building against my will and which prohibits me having my own volition. The removal of my free will is inequitable, unjustifiable and entirely wrong in my view”
Having been deemed to lack capacity to make his own decision about where to live, the Official Solicitor, purportedly representing him in court, argued that Mr G should not return home – an argument directly contrary to Mr G’s wishes.
It seems to me that vulnerable people are penalised when the Official Solicitor elects not to represent P’s own wishes, but rather takes a position about what P’s best interests are – which may be contrary to P’s wishes. It means that P’s wishes are not fully represented in the way that other people’s views in court are – they are filtered through a ‘best interests’ prism. There is surely a case for advocates to represent P’s wishes as effectively as possible, as would be the right of any other lawyer’s client.
In my academic research with the Coma and Disorders of Consciousness Research Centre, I’ve been horrified by the extent to which the position of the Official Solicitor (at least until very recently) has been to weigh the preservation of life very heavily in the balance against evidence that the person himself or herself would not have wanted to be maintained in their current (or likely future) condition.
“Ordinarily, a lawyer who submitted entirely the opposite of what she knew her client to wish would face, at best, professional sanctions, and at worst, a claim for negligence. In the Court of Protection, however, current practice would tend to suggest that there are circumstances where the lawyer must indeed argue against their client’s wishes. It is ironic and is (or should be) a cause for concern that they are doing so in relation to the most vulnerable of clients, and do so on the basis of instructions given by a person—a ‘litigation friend’—contending that they are acting in the best interests of the individual concerned.” (Ruck-Keene A, Bartlett P, Allen N 2016. Litigation friends or foes: Representation of P before the Court of Protection. Medical Law Review 24(3): 333-359 (open access))
Against this backdrop it was reassuring to see the thorough-going and committed attention paid to ZA’s past and current wishes by Emma Sutton, who had been instructed for ZA via the Official Solicitor, Sarah Castle – who was (she said) “directly involved in this case”.
At the beginning of the hearing the Official Solicitor did not agree with the Trust’s application that amputation was in ZA’s best interests, and wanted to consider her position after hearing the evidence.
At the end of the hearing, in her closing summary, Emma Sutton acknowledged that it was a “finely balanced” decision but came down on the side that amputation was NOT in her best interests – most especially as it went counter not only to her current wishes and feelings, but also to her clearly expressed capacitous decisions as recently as last year. The damaging psychological consequences of treating ZA against her will had been acknowledged by all parties, and could include a painful sense of betrayal and damage to her relationships with her husband and son. It’s also not clear that, after amputation, she could return to the life she had before: she’d be more significantly disabled as an amputee, and may not even be able to return home.
She quoted some of the most powerful statements that judges have made in recent years about the weight to be attached to P’s self-determination and autonomy when set against prolongation of life.
“I have concluded that as I am sure that if Mr Briggs had been sitting in my chair and heard all the evidence and argument he would, in exercise of his right of self-determination, not have consented to further CANH [Clinically Assisted Nutrition and Hydration] treatment that his best interests are promoted by the court not giving that consent on his behalf. This means that the court is doing on behalf of Mr Briggs what he would have wanted and done for himself in what he thought was his own best interests if he was able to do so”. Charles J at para 129-130, Briggs v Briggs & Ors  EWCOP 53
“In a real sense this is not a case about choosing to die, it is about an adult’s capacity to shape and control the end of [their] life. This is an important facet of personal autonomy which requires to be guarded every bit as jealously for the incapacitous as for the capacitous. (Hayden J at para 47, Barnsley Hospital NHS Foundation Trust v MSP  EWCOP 26).
Judgment will be handed down at 3pm on Friday 30th April and we will post a link to it from this blog.
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia
Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a key contributor to the Project and as published many blog posts about hearings she’s observed (e.g. here and here). She tweets @DocCMartin
Note: We’ve previously published a number of blog posts concerning other amputation cases we’ve observed:
 These quotations are taken from notes made at the time of the hearing and are as close to what was said as I could make them, given that we are not allowed to record court hearings. They are unlikely to be entirely accurate.
I am a first-year social work student at Bournemouth University. I was lucky enough to hear about the Open Justice Court of Protection Project through one of our lecturers and was immediately intrigued. So, I arranged to observe a hearing as soon as I could.
The hearing I observed was on 20th April 2021 before Mr Justice Hayden at the Royal Courts of Justice via video link (Case Number COP 13663805). I was, unfortunately, only able to attend the first half of the hearing in the morning. but Celia Kitzinger (who attended the whole day) informed me of what happened in the afternoon.
At the beginning of the hearing, there was a summary from one of the barristers, Alexander Campbell (representing the local authority and the clinical commissioning group). He said P is a lady in her early 40s with a number of mental health diagnoses: she has schizoaffective disorder, autism spectrum disorder, moderate learning disabilities and a lengthy mental health history since childhood, compounded by drug use. She also “exhibits sexually disinhibited behaviour”: she has sometimes in the past evaded her carers and sought out casual sexual encounters.
She is currently living in all-female secure accommodation under s. 3 Mental Health Act, but the plan is to discharge her from s. 3 and move her to a supported living placement, which currently has only male residents. This plan was supported by the lawyer acting for P (via the Official Solicitor), Leonie Hirst. The judge was being asked to declare that it was in P’s best interests to move to this new, mixed sex, supported living placement.
He was also being asked to order that P should be given a contraceptive device (also supported by P’s own representative). This was because, due to the medication P is on (sodium valproate – a mood stabiliser), it is vital that she does not fall pregnant: this medication carries a high risk of fetal defects (check out this leaflet). It wasn’t really possible to change her medication because when this had been tried, and she’d been given a different mood stabiliser, she became very unwell.
According to a consultant in sexual and reproductive health who had assessed P and produced a section 49 report, P does not have capacity to consent to contraception or to consent to sex.
A social worker had written a witness statement (and was in court as a witness in the afternoon, which I was sadly not able to attend) saying that the recommended placement was the best of the options available. P would live in a self-contained unit and would not share facilities with any other residents. All the residents at the placement have at least one-to-one care at all times. This means that both P and one of the men would have to evade their carers at the same time for a sexual encounter to take place.
What I learnt from the hearing
I was particularly interested to attend a court hearing because it is an experience that I have missed out on due to the pandemic. Normally, during first year of our social work course, we get the opportunity to visit courts and observe some hearings, but obviously this has not been possible.
However, we have been lucky enough to have District Judge Powell take the time to speak to us and answer our questions. One of the things she explained to us was how you address judges of different levels. I noticed straight away these address terms being used, with Mr Justice Hayden (as a High Court judge) being referred to as “My Lord” or “Your Lordship” throughout. I found it interesting to see how the addressing of a judge works in practice, because when District Judge Powell told us about it I could not picture how, or why, you would use this formal title more than once or twice. I learnt that the term actually replaces “you” when addressing them. I was pleased to hear other people use these terms before having to use them myself.
Also, I was amazed that – even via video conferencing – you could still feel the power that Mr Justice Hayden possessed, yet despite this he was still incredibly compassionate. It did make me think how much more powerful High Court Judges if you were stood in front of them in a court room.
In my lectures we have been learning about the Mental Capacity Act 2005 so it was useful to see it being applied in practice. I was impressed by how thorough everything was and how every little detail is picked apart to make sure the right outcome was decided for P. It was very interesting to see how Mr Justice Hayden was considering questions beyond the direct question that was being asked of him. The case was to decide whether she could have an IUD and move to a different, less restrictive, home. Mr Justice Hayden considered questions around her capacity to consent to sexual relations and the implications that having a coil inserted would have for her.
Having heard Mr Justice Hayden’s line of questioning in the morning, I thought he would not approve the order that it was in her best interests to have contraception and the move to this new home. I thought that if P does not have the capacity to consent to sex, then putting her in a position where it was considered necessary for her to have birth control “just in case” left her vulnerable to being raped.
However, I learnt from Celia Kitzinger by the end of the day that the ruling went the other way. This was partly because Mr Justice Hayden found that the presumption of capacity in relation to sexual relations had not been rebutted. He authorised P’s contraception and move to the new placement as the least restrictive option. From this I learnt that promoting P’s autonomy is an important value in the Court of Protection.
Jasmine Thomson is a first-year social work student at Bournemouth University.
The Open Justice Court of Protection Project, which supports members of the public to observe hearings in the Court of Protection, is the clearest possible evidence that the Court of Protection can no longer be described (as it was in the press in 2015) as the most sinister and secretive court in Britain. Hundreds of people have observed hearings since 15th June 2021 when the Project was launched.
The recent move towards a more open Court began in 2016, with the Court of Protection Transparency Pilot. This aimed to increase access to the court for the public and the media (click here to find out more about the Transparency Pilot). The Pilot has since been adopted into court procedure. It was a response to concerns that the Court of Protection had operated too much behind closed doors in the past, making it appear unaccountable, confusing, and mysterious – even secretive.
Back in the nineteenth century, determinations of incapacity were anything but secretive. They were undertaken through what was then called a ‘lunacy inquisition’, in which witnesses including the alleged ‘lunatic’ gave evidence in public before judge and jury. Not only would local people gather as spectators, but some nineteenth-century lunacy inquisitions were also covered in the national press in great detail. This included breathless coverage of sometimes scandalous or eccentric private lives, and the names, addresses, and detailed descriptions of all involved.
The publicity – and cost – associated with a lunacy inquisition were part of the reason for a significant change in the late nineteenth century. Much simpler procedures without juries were introduced. Many of these cases were decided at a private hearing, or even simply on the basis of papers submitted. These changes were in the interests of making legal protections available to all who needed them, not just those who could afford the elaborate and public ‘lunacy inquisition’ procedure and could stomach seeing their personal, medical, and financial business scrutinised by neighbours and newspapers alike.
The word ‘lunacy’ was also banished from all paperwork and from the name of the office that dealt with incapacity decisions. It was becoming an unfashionable term in any case in the 1920s, seen as both stigmatising and inaccurate. But its disappearance in this context was also a question of discretion. Civil servants felt that it would cause embarrassment to those found incapable of managing their own affairs and their families, if their dealings with a ‘Lunacy Office’ became known.
The Lunacy Office was quietly renamed the ‘Management and Administration Department’ in 1928.
These words at the top of letters and forms, instead of ‘lunacy’, were much less likely to cause discomfort or embarrassment. Importantly, they gave nothing away to the casual observer who might catch sight of a piece of paperwork or appointment book. (In the end, this name proved too opaque and lasted less than 20 years: “Court of Protection” was adopted instead in 1947.)
There were suggestions mid-century to move the business of the Court of Protection into local magistrates’ courts, but these were opposed in the interests of maximising privacy. It was argued that many people applying to the court would rather not have these personal matters heard near their home, where details of mental illness, infirmity, financial problems, or family disagreement might leak out into their community. The relative anonymity of a centralised London court was said (by some!) to be far preferable.
This emphasis on privacy was perhaps a long-lasting legacy of the intrusive press coverage of the nineteenth century. It might also have reflected changing ideas of privacy itself, particularly in relation to the family and any kind of mental infirmity or disability. Some historians have argued along these lines, suggesting that by the mid-twentieth century, children with learning disabilities for example were much more likely to be placed in institutions with little or no ongoing family contact, as though they were a shameful secret. Even just a few decades earlier, children with the same disabilities might have been institutionalised, but would have remained a publicly-acknowledged and valued family member. Difference and disability had arguably become less easily accepted in 1950s Britain. In this context, the overriding impulse within the Court of Protection towards discretion, privacy, and even secrecy, met with little opposition.
Only in the 1970s did this emphasis upon privacy and discretion begin to raise eyebrows. It presented a legal difficulty: the Court of Protection was not a court of record. In fact, it was not quite a court at all. Its cases were an exception to the principle that justice should be administered in public, and so its judgements were largely inaccessible to lawyers trying to advise their clients.
The logic behind this lack of legal reporting was the court’s ‘quasi-paternal jurisdiction’. When acting ‘in lunacy’, the House of Lords had found in 1913, ‘the Court is really sitting primarily to guard the interests of the ward or lunatic’, and not to decide a dispute. Therefore, their primary duty was the individual’s care and not to the public delivery of justice (Scott v Scott ). The fact that this care demands some element of privacy is still reflected today, in the Transparency Orders by which observers are bound. These usually restrict public communication of a person’s name and address, and that of their family members.
It was only when the Court of Protection was re-created as a court of record in 2007 that its judgements were published with any regularity, and significant steps to open it up again to public observers did not materialise until 2014. The open court that we now have would have been familiar to anyone working with the nineteenth century ‘Lunacy Office’, but would have been very surprising indeed to their successors with the old Court of Protection in the mid-twentieth century, for whom privacy and discretion meant a firmly closed door.
This history of the disappearance and reappearance of ‘openness’ shows that change doesn’t always move in one direction. Pressure to make the Court of Protection less public or less open could well resurface again: the transparency we have today should not be taken for granted.
Janet Westonis an Assistant Professor of History at the London School of Hygiene and Tropical Medicine where she is working on a Wellcome Trust-funded project on the history of mental incapacity. You can read her work here and here. Her book Looking after Miss Alexander will be out in 2022 with McGill-Queen’s University Press. She tweets @janetlweston
Photo from the Wellcome Collection. Reference MS.5157 (Part of Holloway Sanatorium Hospital for the Insane, Virginia Water, Surrey, September 1889)
Twenty-eight year old Lucy (not her real name) usually lives in a shared home with one other resident and two 1:1 carers. On the night of 9th-10th March, while in their professional care, she suffered two fractures in her right leg and was taken to hospital. She’s still in hospital nearly a month later. There’s been no formal explanation about how Lucy’s leg was fractured and the police are now involved. Mr Justice Hayden commented that ‘the fracture is really quite alarming’.
Although the current crisis was occasioned by the fractures, these proceedings began back in April 2020. Lucy’s sister (who I will call Angela) wants Lucy to live with her. She wants to care for her on a full-time basis – and she wants to be the primary decision maker, so is seeking Deputyship. She has a spacious five-bedroom detached home with a generous garden and an annexe where off-duty staff could sleep. Lucy could have her own bedroom on the ground floor with an en-suite bathroom. Lucy’s mother and the rest of the family support this plan. The local authority (Kent County Council) has not supported it, and there is to be a final hearing before Keehan J on 4-6 May 2021. Today’s hearing concerned an interim arrangement for Lucy’s care on her discharge from hospital: Angela had applied to court asking for an order that Lucy could be placed in her care at her home.
An interim agreement
I attended this hearing (CoP 11919290 ) before Mr Justice Hayden on 29th March 2021. Lucy’s sister (represented by Ruth Kirby QC) was the applicant. The first respondent was Kent County Council (represented by Michael Bailey), second and third respondents were Lucy’s parents (who were representing themselves and were not at the hearing). Lucy herself was fourth respondent and was represented by Sophia Roper for the Official Solicitor.
Lucy has severe epilepsy which is very difficult to control and is exacerbated by multiple things, including emotional distress and change. She also has a diagnosis of moderate autism and moderate learning disability (though we heard that the day-to-day effects of the learning disability were significant and Lucy needs help with all aspects of living) as well as other physical health problems. We were told that, cognitively, Lucy functions at the 2-3year-old level.
There is an ongoing, substantive case regarding Angela’s application for deputyship for Lucy’s health and welfare, and property and financial affairs – however, this hearing was about an imminent decision regarding to where Lucy should be discharged, as an interim arrangement, from an inpatient period in hospital. Angela wanted Lucy to stay with her, with carer support. The Local Authority had been against this.
But when the hearing began, Ruth Kirby QC (counsel for Lucy’s sister) stated that a lot of work and deliberations had been going on behind the scenes, and parties had now reached an agreement for Lucy’s interim care. Lucy would be going home to her sister’s house for a trial period of five weeks (i.e. until the final hearing), with 24/7 1:1 support for Angela from a care agency, funded by the Local Authority.
Mr Justice Hayden expressed relief at this, and then asked Ruth Kirby QC to provide an outline summary of the case for the observers present, even though a way forward seemed to have been found. I found this extremely helpful: having been to several hearings over the past year where no such summary was provided, it is very hard to understand what the key issues are for P, the person at the heart of the hearing, or what has happened to date.
Lucy’s family’s contact with the Court of Protection dates back to 2012 when an application regarding her care was heard before Mr Justice Holman. The current case was first brought to the Court of Protection in April 2020 when, it was shocking to suddenly hear that, following lockdown, Lucy had not been allowed to see her family (within or from her home setting) between March and August 2020. Ruth Kirby QC noted that ‘contact resumed with the pressure of the court hearings in August 2020’.
Lucy lived with her mother until she was 18 years-old. They have a very close relationship and Lucy had (until COVID hit and lockdown was imposed) continued to spend two nights a week at her mother’s house (with no additional support). She also had regular contact with her father and sister, Angela. Since she was 18, Lucy has lived in several different local authority care settings, and since 2017 has lived in the house mentioned, with one other resident and 1:1 carers. We heard that Lucy is close to her family, who seem to have been incisive and relentless in their advocacy and care for her since she left the family home. Lucy’s wellbeing is reported to be closely connected to regular, predictable contact with her family, her closest attachment relationships. The family has not always seen eye-to-eye with the Local Authority, which is why a first hearing took place in 2012. Ruth Kirby QC reported that the Local Authority says that the family are ‘over-fussy and at times unreasonable and strident in their advocacy on behalf of [Lucy]’.
The family say that they have always tried to work with Kent County Council providers because it is very much in Lucy’s best interests for them to do so – but they have, they say, been met with ‘a sometimes aggressively defensive attitude from Kent County Council which is often obstructive to [Lucy’s] very real needs’.
Mr Justice Hayden stated:
‘The family can feel a pent-up sadness that finds expression in anger and sometimes the Local Authority can be an easy focus for that anger. Equally that anger can be well-merited and justified. But there isn’t any alternative to a cooperative process if [Lucy’s] best interests are going to remain at the centre”.“Whatever the challenges to the relationship between the family and the Local Authority, the reality is they are going to need each other in the future. Not working together is, as it were, not a choice.’
Concerns and challenges
Listening to this story of Lucy’s recent life, and her family’s efforts and persistence in caring for her, was quite shocking to hear – though not entirely surprising. There were so many things that were briefly mentioned, or alluded to in passing, that it was hard to take in all of the incidents and issues that have caused concern and rancour between the family and the Local Authority since Lucy left home. What was quite clear, though, was that things had become much worse over the past year or so, even before the pandemic.
Angela had cared for Lucy pretty exclusively in hospital over four inpatient admissions between January and April 2020 (as well as this admission), because the hospital staff needed Angela’s expertise to help Lucy feel safe and settled. Lucy was admitted in 2020 for increasingly serious seizures, a urinary tract infection and dehydration. We learned that Lucy’s emotional state is a delicate balance of regularity of contact with people who love her, predictability and familiarity within her environment and safe care (including, it was argued, needs around dietary and environmental triggers for seizures). Without this balance being good-enough, Lucy’s wellbeing can deteriorate quickly: she can stop eating and drinking, sleep for excessive periods, become less cooperative with her care and, when very distressed, smear faeces. In the absence of an ability to understand, herself, why she might be feeling upset or frightened, or to tell people in words even if she does understand why, it sounded like Lucy was very able to communicate her distress to others clearly through her behaviour, if they are able to look, listen and take action.
What struck me about all of this was that, when the care teams (in this case the acute hospital) needed assistance in caring for Lucy, Angela was allowed access and contact during lockdown. This would suggest that Lucy’s family relationships are key to her wellbeing. However, when back at the care home, these key relationships were not deemed essential during lockdown. It’s almost as if the family was called upon when the system itself felt it needed support, but was excluded when Lucy’s daily, ongoing, psychological needs were to the fore. It has been very hard for care homes during the pandemic – keeping residents safe from the virus and trying also to cater for their emotional and relationship needs have often been at odds (as discussed in other blog posts, e.g. here). In Lucy’s case, however, she ended up moving back and forth into hospital – which would have been best to avoid if at all possible – and it made me wonder whether a clear plan of allowing specific family visits (like in hospital) would not have been far better for all concerned.
The contested status of Lucy’s sensitivities and allergies, and how they contribute to her care needs, also remains unresolved. Michael Bailey (counsel for the Local Authority) noted that the family has been raising this since 2010. Ruth Kirby QC stated that any such needs have been ‘resisted heavily by the Local Authority’ and though the 2012 Court of Protection hearing found no evidence to support the queries, Lucy has since been diagnosed with Coeliac’s disease and has been found to have adverse reactions to an anti-convulsant medication and to synthetic perfumed products (such as washing powders). A referral to a specialist allergy testing team was meant to have been made in 2018 but that ‘didn’t progress’ into 2020, and has still somehow not been done. Ruth Kirby QC summarised that ‘it has now been accepted by all parties’ that such testing should take place, to enable an adequate care plan to be formulated for Lucy.
Mr Justice Hayden, in what seemed to me an expedient move borne of exasperation, offered a solution: he referred to ‘harnessing the synergy of these proceedings to do some good’.
‘I can get an expert in on the back of these proceedings – so there is no need to wait for a referral. This case has a very troubling background indeed’.
I thought that was a very diplomatic understatement. How can Lucy not have had these concerns properly investigated over this long period? Her seizures, as we understood them, are potentially life-threatening, and the question of triggers for the seizures are left to drift and investigation of them ‘actively resisted’ by the bodies charged with her care, it was suggested by counsel for Angela. This, despite years of evidence about the needs of people with learning disabilities being inadequately met by health and social care services.
‘The Review also exposed wider concerns about how people with learning disabilities or autism and with a mental health condition or challenging behaviours were being treated in England.’
‘There is consistent evidence in the studies reviewed that general hospital services vary greatly in how well they identify and make adjustments for patients who have learning disabilities. We know that poor care in hospital makes people with learning disabilities more likely to be readmitted within a month.’
George Julian’s blogs and live Tweeting of coroners’ inquests passionately and forensically address the failures of care and accountability in our health, social and judicial systems for people with learning disabilities and autism. On her website (https://www.georgejulian.co.uk/blog/) she describes her ‘primary focus is live tweeting coronial inquests into the deaths of learning disabled and autistic people‘.
So, the urgent issue of Lucy’s unexplained double leg fracture starkly illustrated for me the need for careful decisions around establishing her needs, where (and how) she is best cared for. It emerged that, despite Lucy having 1:1 care in a small home of only two residents, she somehow sustained two fractures in her right leg on March 10th 2020. According to Ruth Kirby QC ‘there is no start to an explanation as to how she sustained the fractures in the leg’. The judge noted that ‘a 90 degree rotation of the knee’ had occurred- the sort of injury (Ruth Kirby QC said) that might be seen with legs that get stuck in bedrails and then the person turns over – except that Lucy does not have bedrails. The Local Authority had suggested that osteoporosis might explain the fractures, though it was reported that a DEXA scan (bone density scan) was conducted and was ‘not determinative’ of osteoporosis. Further, Lucy had surgery to insert a rod into her leg and there was no splintering, which, we were told, would be expected with osteoporosis. All in all, there was not, yet, an explanation for how Lucy came to have such an injury; and the Local Authority had originally been suggesting that she return to the same home where she sustained the fracture. I could understand why Angela and the family were not in agreement with this proposal.
There was reference to a lot of effort on Angela’s part to find ways forward over several years. Most recently, following a hearing with Mr Justice Peel on 19th March 2021 and approval of a timetable for directions put forward by the Official Solicitor, Angela provided a ‘specific care plan’ as asked. The Local Authority had also been directed by the judge to compile a ‘balance sheet’ of advantages and disadvantages of Lucy living with her family, since they (the LA) opposed this option. Apparently, no balance sheet had been provided; rather a list of reasons why Lucy should not live with her family was provided. I did not see this document, so it is entirely possible that the Local Authority’s concerns were thought through – though curious that they could see no potential positives at all of Lucy living with her family.
“Dignity as an adult”
There was a suggestion, by Ruth Kirby QC, that the weight of the Local Authority’s focus was on what was described as Lucy’s ‘dignity as an adult’. This concept was reportedly being used by the Local Authority as the baseline from which to argue that Lucy should not live with her family. Ruth Kirby argued (notwithstanding consideration of how ‘dignity’ is being defined here) that this weighting is unreasonable and occludes other, more salient factors for safe and nurturing care for Lucy. Though other factors were not appraised in detail, I would posit that a potential overarching factor would be the psychological safety Lucy derives from her close relationships.
This made me think about dignity. How is ‘dignity’ understood and defined culturally, legally, in Human Rights legislation and in social and health care practice in the UK? There is a rich and interesting literature on the concept of ‘dignity’ – I am likely only aware of a very small slice. My concern is that it is a concept that can be invoked by anyone to support their position – and therefore how useful it is as a benchmark to draw a red line for someone’s care is potentially questionable. I will do a bit more reading and pondering and write a further blog about this, and would be very interested to hear others’ views and experiences of the use of this concept as it is used in practice in making on-the-ground decisions about health and social care.
An ideal solution is often not possible in life – and certainly did not seem possible for Lucy. Until this hearing the Local Authority position was that Lucy’s best interests would be met in one of two (new) care settings. That position changed just prior to the hearing, and we as observers were not sure why. The Local Authority was, however, now prepared to support an interim residence for Lucy at Angela’s home. There will no doubt be many challenges for Lucy’s family and the care team involved in helping her regain enough of a feeling of safety, predictability and consistency to enable her to join in with her rehabilitation. In the end it was Angela’s tenacity, and the Local Authority’s willingness to compromise, that have meant that she can, for the time being, live with people with whom she feels most familiar and safe. This surely is the best way to ensure ‘dignity’ and the conditions for any of us to flourish.
Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin
Everyone is suffering as a result of the pandemic. Mr Justice Hayden described it as ‘a pandemic in which fundamental rights and liberties are at every corner curbed’. The ‘right to family life’ (Article 8 of the Human Rights Act) has been one of the most painful casualties of the public health emergency. I have so many friends who have not hugged their grandparents in over a year and many who have lost their loved ones too.
On Wednesday 17th March 2021 I observed a hearing before Mr Justice Hayden (case no: 13677496). I’ve previously attended hearings via telephone (and blogged about one here) but this was the first hearing I’ve attended via video link, and also the first time I’ve had the opportunity to observe Mr Justice Hayden, Vice President of the Court of Protection. I am 16 years old and my reason for wanting to observe court hearings is because I intend to study law at university – so this offered me the opportunity to see how the court works in practice.
In the hearing I observed, the person at the centre of the case, Michelle Davies (whose name, unusually, is not protected by a transparency order) has had limited contact with her family over the past year due to the pandemic. I have no elderly relatives living in a care home, and so hearing about Michelle’s situation introduced me to a new perspective regarding the pandemic – how is it possible to balance contact with your loved ones whilst protecting your personal health, and the health of the others too? This hearing opened my eyes to the experiences of those living in care homes – those whose physical health is most at risk from coronavirus, but whose mental health has suffered equally, with an inhuman decrease in contact with the people they love.
Overall, I was touched to see the humanity in the online courtroom, and the interpersonal skills of Mr Justice Hayden, who entirely contradicts my prior assumptions that a judge needs to be distant, formal, and impersonal in his demeanour. However, I spent much of the hearing perplexed as to the reason why it was in court in the first place.
Michelle Davies, who is only in her 50s, has been in residential care since 14th December 2018, when she suffered a subarachnoid haemorrhage and then, a week later, a stroke, which caused brain damage. From mid-December 2018 until 17th March 2020, Michelle’s husband, Dr John Davies, visited his wife for many hours every day. That all changed with onset of the public health emergency.
When the application was issued (in October 2020) Michelle Davies was in a different placement and visits had been banned completely. For months in the summer of 2020, John Davies was not permitted to visit at all, and visits were very restricted after that – largely limited to video calls. Believing this to be a violation of Michelle’s right to family life (Article 8), John Davies – acting as litigation friend for his wife, represented in court by Lorraine Cavanagh QC – applied to the court seeking increased contact. Michelle moved to her current placement on 16th November 2020.
At an earlier hearing, back in November 2020 (blogged about by Celia Kitzinger here), a first attempt was made to resolve this situation. I had read this blog just a week or so earlier, with the intention of attending the next hearing on Monday 8th March. As it happened, I then wasn’t able to attend that hearing and I was unaware when I joined the hearing on Wednesday 17th March that it concerned the same case: I only realised this when discussions began, and I felt glad to already know much of the key information.
At the hearing on the 8th March 2021 (this information is via Celia Kitzinger), counsel for Michelle Davies reported that there had been just one visit in the last three months where Michelle Davies and her husband had been able to hold hands inside the care home. (There had also been some window visits.) Counsel was seeking an interim order for face-to-face contact between John and Michelle Davies inside the care home at least twice a week, pending the next hearing – as well as face-to-face contact for Michelle and her parents (who were both ill) and daily window contact with others including Michelle’s son and other family and friends.
These visits would amount to a lot more contact than most care home residents are (or were) able to have.
Counsel invited the court to consider whether John Davies met the criteria to be an ‘essential care giver’ (he was considered not to do so by the care home) – but that issue was not resolved. Due to government changes in care home visiting, care home residents can (from Monday 8th March) have a ‘single named visitor’ (someone who frequently visits their loved one but with minimal physical contact) but there is a different category of visitor named an ‘essential caregiver’ – applying to someone ‘where close contact personal care from a loved one is critical for the resident’s immediate health and wellbeing’. The differentiation between these two roles is not particularly clear in the government guidance but the applicant argued that John Davies fulfils this role because of his involvement (informally) in supporting Michelle’s neurorehabilitation and averting mental health problems such as anxiety and depression. It was also argued that it was in Michelle’s best interests to have these visits.
The draft order on 8th March 2020 was that Michelle Davies:
Shall have face-to-face contact including physical contact with John Davies on no less than 2 occasions a week (for a period of no less than 1 hour on each occasion).
Shall have face to face contact with her parents on at least 2 occasions before the next hearing.
Shall have direct contact (which may be by window contact) with John Davies and Kane Davies [son] and other family and friends on a daily basis at such times and for such duration as may be agreed with the family and [Care Provider].
For the long term, the hearing on 8th March was adjourned for a meeting to be held between the parties and for the care home to identify a visiting regime acceptable to everyone. This turned out not to have been possible by the date of the hearing I observed on 17th March 2021.
My experience of the hearing on 17th March 2021
The hearing involved Lorraine Cavanagh QC, representing Michelle Davies via John Davies as her litigation friend, Victoria Butler Cole representing the local authority, and the care home manager in person, representing the care home.
By the time of this hearing, many things had changed in the 9 days since this case was last in court.
A death in the family – Michelle Davies’ mother had died.
Available visiting slots – John Davies had been able to significantly increase his visits.
Disagreement about whether Michelle Davies has capacity to agree to (or to challenge) the visiting policy herself: the care home had conducted a capacity assessment and said Michelle had capacity to make her own decisions regarding this matter, and that she had agreed to curtail her visits from her husband. Counsel for Michelle did not accept this capacity assessment.
The care home terminated Michelle’s placement (in part due to  above).
The backdrop for this hearing is that the care home placement is intended only to be temporary, until John Davies is able to get building work completed on his house so that Michelle can return home, hopefully by the end of this year.
A death in the family
First of all, Michelle’s mother had sadly passed away on Tuesday 9th March 2021, and John Davies only broke this news to his wife the day before this court hearing, during a lengthy (one and a half hour) visiting slot. John Davies described his wife as unsurprisingly ‘very distressed’ and becoming ‘more and more withdrawn’, the care home said she’d had a broken night and had been sobbing afterwards. Having seen her that very morning before going into court, John Davies said he had only managed to get ‘one smile out of her’. John Davies also expressed that ‘informing her of her mother’s death was the most difficult thing I have ever had to do’.
When Mr Justice Hayden asked for John Davies’ honest opinion as to whether Michelle will be able, in every sense of the word, to attend her mother’s funeral, he expressed with certainty that he was ‘keen’ for her to go. Everyone agreed that it would be best to take the matter ‘on a day by day, hour byhour’ basis. Whether Michelle attends or does not attend her mother’s funeral is of course not a decision to be made by the court, but I feel that the discussion around it was important in order for all in the courtroom to have a better understanding of Michelle’s capacity – and of her emotional state – at the moment, at this obviously distressing time.
2. Available visiting slots
Between the 8th and 17th March, John Davies was able to visit his wife on four occasions (on the 9th, 11th, 13th and 16th), each visit being one and a half hours. This was more than the court had been asked to order and this was possible because the care home had arranged 30-minute visiting slots for all residents, not all of which were then used. John Davies had taken the opportunity to use the unclaimed visiting slots, and by taking two consecutive 30-minute slots, he gained the half an hour cleaning time scheduled in between visitors as well.
Despite the “lengthy and meaningful time” that the couple have been able to spend together recently, the case was back in court because this happy situation is dependent on the non-uptake of visiting slots by other patients’ families. It’s not clear why other residents have not been using their visiting slots: it may be that the residents are awaiting their second vaccinations, or that their elderly visitors are waiting to be fully vaccinated. All of this could change, and if it does, and other families request visiting slots, the only arrangement that the care home will commit to is that John Davies can visit for one 30-minute slot on one occasion per week.
So, the purpose of the hearing initially was to seek an interim order, based on a best interests analysis for Michelle Davies, that she should normally have a minimum of 2 visits a week from John Davies, each lasting one hour. This, said Lorraine Cavanagh QC, is necessary because government guidance is not law, and the law requires best interests decision making and bespoke arrangements for residents who lack capacity to decide their visiting arrangements for themselves. The care home cannot, said Lorraine Cavanagh QC, simply apply a blanket policy to all residents – everyone has their own individual needs.
In a supplementary position statement submitted by the care home on the morning of the hearing, the care home stated clearly that they:
“ask the court to have regard to the limits on what the court has the power to do. Presently, regretfully, [we] are required for public health reasons and to ensure the safety of residents and staff members to limit visits to the Home. All residents who live in the home who have capacity are requested to consent to this policy. The visiting arrangements that the Applicant is seeking is not presently an available option that can be offered to any resident in the home”.
3. Disagreement about whether Michelle Davies has capacity to consent to (or to challenge) the visiting policy herself
Mr Justice Hayden helpfully summarised a significant development since the previous hearing. Addressing Lorraine Cavanagh QC, he said:
“What you’re saying is that the Director and Deputy Director of the care home undertook an assessment to see if Michelle Davies herself had the capacity to make a decision about whether to have limited contact with her husband in accordance with the way the home has perceived their obligations, i.e. 30 minutes once a week, in parity with other residents. Their conclusion was that she does have such capacity and is content to limit her contact with her husband in that way. And you are suggesting that their conclusion is difficult to reconcile with everything we know about Mrs Davies, the way she has lived her life, her relationship with her husband, and what has been seen in the course of their meetings”.
“Yes,” said Lorraine Cavanagh QC. “And, also, her communication abilities.”
According to the care home manager, who was present in court, Michelle Davies is able to understand the visiting policy, and does consent to be bound by it. Capacity, said the manager, should be presumed – and there is no indication in her view that Michelle Davies lacks capacity to understand the situation. In her professional opinion (and that of the deputy manager) Mrs Davies has capacity to understand the visiting policy, the restrictions this places on visitors, the reasons for the visiting policy and the risks that the visiting policy is seeking to minimise. She understands that because of the pandemic, the number of visits to the home is limited.
“Michelle made it known that she would not want any other resident to have their visiting allocation reduced to enable her to secure additional visits.She would not be happy if anyone else was deprived of visits because she wanted to have more. She’s a very empathetic and community-minded person. That’s not been taken into consideration on this.”
If Michelle Davies has capacity to make her own decisions about visiting arrangements (as the care home assessors say), then no best interests decision can be made on her behalf.
However, Lorraine Cavanagh QC says, on Michelle’s behalf, that her “range of communication ability simply cannot convey the decision attributed to her unless she was led and nodded in agreement”.
In assessing a person’s capacity to make a decision, it’s important to determine what the relevant information is that a person would need to be able to understand, retain and weigh in making that decision. According to Lorraine Cavanagh QC:
“The assessors appear to have attempted to appeal to Michelle Davies’ altruistic personality and appear not to have recorded a balanced list of the relevant information that she would need to understand to make such a decision. There is, we submit, a most unfortunate biased quality to this assessment. It appears to be an exercise in persuasion rather than an assessment of capacity; the contents suggest that the outcome was inevitable before the assessment began, we submit”. (paragraph 21, position statement, counsel for Michelle Davies).
In summary, “the applicant disputes the quality of, and the conclusions reached in, the assessment” of Michelle’s capacity. As counsel for Michelle Davies, Lorraine Cavanagh QC disputes that Michelle Davies has capacity to consent to the visiting policy, maintaining that she does not, and she says that Michelle Davies cannot make her own decision: rather a full best interests decision-making process is required by the court. (paragraph 22, position statement, counsel for Michelle Davies).
Given the difference in opinion about Michelle Davies’ capacity, all parties had come to an agreement, before the hearing began, that an independent psychiatric opinion was necessary to determine Michelle Davies’ capacity to conduct proceedings, and to take decisions as to her place of residence, her care package, her contact with family and friends, and whether or not to accept restrictions on her contact with her husband in accordance with the care home’s general policy.
4. The care home terminated Michelle’s placement
The most significant change, from the court’s perspective, was that on the morning of the hearing at 9.58am, the manager of Michelle’s care home had emailed John Davies, terminating Michelle’s placement, and giving her notice to leave.
This seems to have been an absolute bombshell for everyone. The judge referred to the “parlous position that we’ve reached today” and asked “how have we got to such a pass? And at a time of such extremity for Mrs Davies.”
The care home was clear in its position statement (submitted on 12th March) that:
“if it is ordered by the Court that it is in Mrs Davies’ best interests to receive two one-hour visits weekly, and these visits must be guaranteed, it is with considerable regret that [the care home] will be required to serve notice. [The care home] cannot guarantee Dr Davies nearly 20% of the visiting slots that are currently available. This would be manifestly unequitable and ultimately could lead to harm to other residents. [We] cannot increase the number of visiting slots available because this cannot be managed safely and in accordance with government and infection control guidelines.”
By the time of the court hearing on 17th March, the care home had served notice. This had been precipitated, said Lorraine Cavanagh QC, by her criticisms of the capacity assessment undertaken by the care home manager (paragraphs 21 and 22 from the position statement, quoted in the previous section). The care home manager felt “professionally undermined” and “accused of undertaking a capacity assessment with a particular outcome in mind”. This is not, said Lorraine Cavanagh QC, what was intended. “We are not suggesting any form of deliberate, outcome-led assessment” and “Nothing in that paragraph suggests anything fraudulent or undermines [the care home manager’s] professionalism”.
The decision to terminate Michelle Davies’ placement was (said the care home manager) “not a decision that had been taken lightly“. From her manner and considered tone, I could not help but think that the manager had the best interests of all the residents in the care home at heart, and those interests were equal and not exclusive to Michelle. I think this attitude is admirable, for although fairness is essential in a care home manager, I am sure it is not easily attainable. She was evidently distressed about the way the court had become involved with Michelle and felt that things would have worked out better without lawyers involved.
“We’ve got on tremendously well, me and John. We could have sorted this out without all this to-ing and fro-ing and putting me in a position where I’ve felt I’ve had no other option but to terminate Michelle’s placement. I knew I’d be able to ensure John would get more than his half-hour once a week, but there have been constant demands to put that down in black and white when it’s not between me and John – it’s about the lawyers that have become involved at all stages. What can be worked out seems to have been lost in the ether somewhere. I don’t appreciate being accused of being unprofessional. I’m a very hands-on manager. I’m not a legal bod, and I feel as if I’ve been pushed into a corner, and so has John. Why can’t we sort this out?”
I can completely understand the care home manager’s position. She must feel that she is being pressured and criticised for simply trying to do her job fairly for all involved.
The judge’s position
Under the circumstances, Mr Justice Hayden was obviously reluctant to order the capacity assessments requested by Lorraine Cavanagh QC (and agreed by all parties). He suggested that they might, under the very specific circumstances of this case, be a “distraction” from the key issues, and that they risk “merely burdening Mrs Davies and achieving very little practically speaking”. He queried “whether this is the right time for these assessments”.
“I don’t want to drive a coach and horses through a position that’s been agreed by two experienced counsel, but I’m slightly concerned that we are veering off to a position that, as John Hopkins used to say, has ‘every kind of sense apart from common sense’”.
To me, this was no longer a matter for the courts. There appeared to be a lot of conflict and much misunderstanding that would be better resolved through conversation between John Davies and the care home staff, and not in an unnecessary legal environment. Mr Justice Hayden seemed to be of the same view. He said he would “trust in the instructs of [the care home manager] and the instincts of Dr Davies to get this right”, adding, “I genuinely hope you are both able to work this out”.
Bringing the case to court again seemed to me to bring a lot of stress and very little benefit to everyone involved – so why was it there in the first place? Michelle’s case had a history in the courts, and so the legal solution was easily accessible: it felt as though she was on a legal treadmill and it’s hard to step off. Many people would assume that an issue taken to court could reach a faster and clearer conclusion than if it was left alone to the conflicted parties. However, this circumstance has shown me how that assumption will not always be true.
Mr Justice Hayden made a poignant statement when he said:
“If ever a case needed a space for quiet reflection, it is this one at this point. I think it would be terrible if Mrs Davies had to move to another home on an interim basis before she got home. I could only see that as entirely inimical to her welfare. I don’t think [the care home manager] would want that, any more than I would or Dr Davies would. I think if we focus on the goal at the end of this, and the timescales involved, that is more likely to guide us in the right direction.”
Perhaps a much smoother, fairer and more considered answer could be found if the parties shifted their reliance from the courtroom, and the law, and placed it upon the good faith of each other, to carefully consider and decide the best interests of Michelle Davies.
Humanity in the Court of Protection
Most of all throughout the hearing, I was warmed, and a little surprised, by the kindness and consideration shown by Mr Justice Hayden to all the parties involved.
All my visions of an utterly formal hearing were shattered by his easy conversation with John Davies on personal matters as well as professional. Partway through the hearing, there was a smooth shift in discussion from the heavy matters at hand to what Michelle loved to eat. John Davies told everyone that “Michelle was an excellent cook and I was excellent at eating it“. I found it heart-warming to be witness to such a down to earth and human conversation in a legal environment that can so often be consumed by deadlines and documents, and the smiles on the faces of everyone with their video on proved that many others felt the same way.
This humanity is something I have come to see as a necessity in the courts – how can we as a society trust the law to be upheld if not by people who are fundamentally humane?
Though the complexities of law and guidance can easily become impersonal, I also noticed how everything discussed in the courtroom was brought back to John and Michelle as people, to their experiences and their relationship with each other. This showed me the importance of personal interpretation in a system which is so easily consumed by intricate wording and exact definitions.
From an outsider’s perspective, the court can appear quite intimidating and inaccessible. What this hearing showed me was that this is not always the case. Near the end of the hearing, Mr Justice Hayden pointed out the trophies which he could see in the background of John Davies’ video: they were rugby trophies, from what John Davies described as “a previous life almost“, both in time and in situation. This was another heart-warming moment for me as an observer, and it was interesting to note that this exchange was only possible due to the use of a video platform, enabling the judge to see into John Davies’ home instead of being situated in the conventional environment of the courtroom.
As the hearing drew to an end, Mr Justice Hayden remarked how John was “going for gold to get your wife home“. This subtle link to their earlier discussion brought smiles all round, and it emphasised to me the most important consequences of the hearing: considering Michelle’s best interests in the long term, not getting caught up in the strain of the moment and treating every person individually – not allowing them to just become a name or a pixelated image.
Finally, Mr Justice Hayden made clear that, despite the care home having served notice on her, he was “assuming that you will plot a course through this to keep Mrs Davies where she is”.
Though no legal judgement was given, I learnt a lot – about how the law can often hinder, not help, all the parties concerned; about how online hearings can bring advantages to everyone, not only to observers; and most of all about how essential humanity is to the Court of Protection, and to justice as a whole.
Evie Robsonis a Year 12 student studying English Literature, French, Maths and Further Maths at Whitley Bay High School. She has just set up a new Twitter account and would love followers to network with @evie275
 Thank you to Celia Kitzinger not only for filling me in about what happened at the hearing on 8th March 2021, but also for contributing relevant background information and the quotes from the position statements (which the court had sent to her but not to me). I’ve appreciated her support throughout the process of learning about the Court of Protection.
Thank you to Dr John Davies who supplied the lovely photograph of himself and Michelle before her stroke.
Editorial Note: Problems with accessing the Court of Protection – especially (but not only) in the regional hubs – pose an ongoing challenge for public observers. “Inadvertent” as well as “deliberate” exclusion of observers is also discussed in Celia Kitzinger’s blog post here. We welcome suggestions as to how these problems of access can be addressed.
We set aside the morning of 8th April in the hope of attending a Court of Protection hearing , but despite our best efforts, this turned out not to be possible. This experience was frustrating – and it wasn’t a one-off. We’ve encountered similar difficulties on other occasions, so we’re writing this short piece simply as an illustration of what ‘transparency’ can be like from the perspective of the would-be observer.
Claire is a Clinical Psychologist working in older people’s mental health services in Gateshead, and Evie is a 6th form student hoping to study law at university. Between us, we have attended several Court of Protection remote hearings during the pandemic, and have contributed blogs to OJCP (e.g. here and here). We strongly support open justice and the public being involved in how justice is delivered in the UK, both to offer scrutiny to the court system and also to learn about the intricacies of how law is applied.
We both applied the night before (7th April 2021) to attend COP 13625844 TS (via MS Teams) before District Judge Taylor at 10am on 8th April 2021, which was estimated at 90 minutes. This hearing was at Bristol. At 9.39am on the morning of the hearing we received this reply from the judge (via the administrator) at the South West regional hub:
Since it was now 9.39am, we decided to apply for District Judge Carter, sitting at Nottingham Family Court, so we emailed the Midlands regional hub in Birmingham. The case to which we requested access was COP 13719048, listed for 10am. We apologised for the late request, explaining that access to another hearing at 10am had been declined. We received the automatic email reply, so we knew we had emailed correctly.
At 09.57am Claire telephoned the Midlands hub in Birmingham. The administrator was very helpful and said that the judge would need to decide about access and would get back to us. We did not hear anything by 10.15am so we emailed the Midlands hub again to request access to COP 13673339 with District Judge Rogers in Nottingham, listed for 10.30am, again apologising for the late request. We heard nothing back.
At 10.32, realising that we had probably not been granted access to DJ Rogers’ hearing, we got back to the Midlands hub asking this time for access to COP 13723577 before District Judge Carter in Nottingham at 11am. At 10.53, having heard nothing, Claire telephoned the Court to confirm receipt of the requests. The same court administrator answered and was again helpful but explained that she could do nothing more than email the judge with requests. She said that DJ Carter had three, back-to-back hearings that morning which might explain why no response had been possible, as ‘there is no break for her between hearings’. She didn’t know why District Judge Rogers had not replied.
As we write this, it is 12.02pm and Claire has had no response to the fifth request of the day (which had been made at 10.15am) – to observe COP 13678165, DJ Carter’s final listed hearing at 12noon in Nottingham.
We understand that the court system is under considerable strain, and managing requests to observe on the day is time-consuming and can be challenging both for administrators and for judges.
It’s a tricky dynamic – open justice is a principle of the court system, yet in asking for access it can feel that you are being unreasonable, or causing hassle or that you are in the way. Saying that the Courts are open, and actually being open, can be two different things.
If we could apply earlier to attend, we would, but hearings are generally not listed until the night before. Our experience has been that requests to attend Tier 3 hearings (in the Royal Courts of Justice list) are (mostly) responded to reliably, and more speedily, and it is easier to access these hearings.
When setting aside some time to attend a hearing, anticipating some chance of success is important, otherwise the justice system is not really ‘open’. We will look out for Tier 3 hearings next time – but this does mean that hearings in the regional hubs are effectively ‘closed’ to public scrutiny.
Evie Robson is a Year 12 student studying English Literature, French, Maths and Further Maths at Whitley Bay High School.She has just set up a new Twitter account and would love followers to network with @evie275
Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin
So what went wrong? Why did an experienced neurologist provide “effectively worthless” evidence, and how was it possible for this to be admitted to court and to take up many hours of court time with senior barristers and a Tier 3 judge sitting until past 8pm one evening? How did this application leapfrog to the front of the hearings list, when many other vulnerable disabled people are waiting many months for decisions about fundamental aspects of their lives?
The evidence Patrick Pullicino gave, if accepted, had the potential to reverse the court ruling just over a fortnight before that life-sustaining treatment could be withdrawn from the person at the centre of the case – a middle-aged man known in published judgments as “RS” (University Hospitals Plymouth NHS Trust v RS & Anor  EWCOP 70).
RS had suffered a cardiac arrest on 6th November 2020 during which his heart stopped for at least 45 minutes, and he would surely have died but for cardio-pulmonary resuscitation. The inevitable consequence was severe and irreversible brain damage.
His treating clinician and the independent expert appointed by the court (Dr Dominic Bell, a Consultant in Intensive Care Medicine) diagnosed him as being first in a ‘coma’ and then later in a ‘vegetative state’ (i.e. unconscious, unaware of himself or his surroundings). The clinicians agreed that he was likely to remain completely unconscious, but there was a small possibility (the independent expert put it at between 10% and 20%) that he might in future reach a state known as ‘minimally conscious minus’.
Dr Pullicino’s evidence, by contrast, was that RS either was already, or was showing signs of becoming, minimally conscious. He said that RS moved his eyes towards people by the bedside who called his name and showed “a clear emotional response to the presence of the family members”. This meant that his prognosis was much better than previously suggested. Dr Pullicino even said in court that “this man has a 50% chance of being independent in his own home”.
The difference in diagnosis and prognosis had huge implications for RS’s treatment, because, in English law, considerable weight is attached to what the patient would decide for themselves if they could. RS’s wife had given evidence that RS would want, as a minimum, to be able to interact with her and with his children – even if only to squeeze their hands or move a finger to acknowledge their presence. According to the court’s expert witness, Dr Dominic Bell, this was very unlikely ever to happen. At most, he might in future be able to acknowledge the presence of a human being, but there would be no means of knowing whether he was responding to a particular person or simply to someone, anyone, for example, holding his hand.
On that basis, RS’s wife had come to the view that RS would not want to continue to receive the clinically assisted nutrition and hydration (via a naso-gastric feeding tube) that was keeping him alive.
By contrast, if Patrick Pullicino’s diagnosis was correct, then it seems certain that RS would want life-sustaining treatment to continue.
At a previous hearing, before Pullicino’s evidence became available, Cohen J had ruled that it was not in RS’s best interests to be given nutrition and hydration and that such treatment could be lawfully discontinued. At this second hearing, he was being invited to reconsider this decision in the light of new evidence that RS may be showing more evidence of recovery than previously thought.
I don’t want to rehearse the scientific reasons for dismissing Patrick Pullicino’s evidence: they are presented by Cohen J in his judgment (paras. 24-30) and they reflect the professional opinion of the independent expert who also looked at Dr Pullicino’s evidence and subsequently re-examined the patient, and found him still to be vegetative – as well as the judge’s own assessment of Dr Pullicino’s evidence in the (virtual) witness stand. The science behind the diagnosis, and the problems with Dr Pullicino’s evidence, are also discussed more broadly in the previous blog post (here) by Jenny Kitzinger, from the Coma and Disorders of Consciousness Research Centre.
Instead, I want to consider the basis for Mr Justice Cohen’s concern with Dr Pullicino’s “objectivity”, and in particular the way in which religious beliefs and ethical commitments have infused this case.
A Roman Catholic perspective on clinically assisted nutrition and hydration
The Roman Catholic faith was central to the family’s disagreement about what RS would want in this situation.
Mr Justice Cohen said, “The issue is focused around RS’s religious faith, his adherence to the tenets of the Catholic religion and their application in these circumstances.”
According to the birth family (RS’s mother, sisters and niece), RS:
“… was religiously conservative, opposed to abortion, even for an unborn child likely to be medically compromised and opposed to euthanasia. It was a matter of upset to him that he and his wife were unable to obtain an annulment of her previous marriage and thus marry in church and that thereafter he was unable to take Holy Communion. That many Catholics would not stop taking Communion in such circumstances shows, they say, his adherence to his religion. Taking all these factors together, they say, would show that he would not want his life terminated if it could be sustained. The preservation of life would outweigh all other factors in his thinking.” (University Hospitals Plymouth NHS Trust v RS & Anor  EWCOP 70 (15 December 2020))
According to his wife, although RS was religious and went to church at least once a month, this:
“… did not mean that he, certainly by 2020, adhered strictly to all aspects of the doctrine of his faith. He had married her, a divorcee. He pursued their relationship in the full knowledge of her status and they began their family life before marrying in a registry office.” (University Hospitals Plymouth NHS Trust v RS & Anor  EWCOP 70 (15 December 2020))
In recent years there had been relatively little contact (how much, exactly, was disputed) between RS and his birth family, many of whom lived in Poland – and RS had not seen those of his family who live in England, since about 2011. That was one reason why the judge placed much greater weight on his wife’s evidence of RS’s views because it was (he said) she who knew him best.
When the birth family sought permission to appeal, they did not initially challenge the medical consensus about RS’s diagnosis and prognosis. Instead, they said the judge’s decision was unjust because he hadn’t considered how RS would have wanted to be treated against the backdrop of the tenets of his Catholic faith. In their view, Mr Justice Cohen moved far too swiftly to the conclusion that this devout Catholic man would have wanted something that was in conflict with the teaching of the Church – that the end of life is a matter for God and not for Man. ( para. 13, Z v University Hospitals Plymouth NHS Trust & Anor (Rev 3)  EWCA Civ 1772 (23 December 2020))
For many Catholics, food and water – whether provided orally or via a feeding tube – are part of basic care, and not a form of medical treatment. (I note, parenthetically, that in my experience, this is true for many people, both those with and those without any specific faith: it is, in fact, not widely known – even among health care professionals – that a feeding tube is defined by English law as a medical treatment.)
Pope John Paul II clearly stated that the Catholic Church regards nutrition and hydration (however provided) as a natural means of preserving life:
“I should like particularly, to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering. The obligation to provide ‘the normal care due to the sick’ in such cases includes, in fact, the use of nutrition and hydration.” (John Paul II Address on “Life-sustaining treatments and the vegetative state” (20 March 2004), 4)
The view of Pope John Paul II, who was – like RS – Polish, is particularly pertinent because one of RS’s treasured possessions was a photograph of himself as a young man during an audience with this pope. This image was used by LifeFunder (“a platform created to serve the pro-life, pro-family, and Christian communities”) to raise money to fund the legal challenge to the court decision.
Figure 1: LifeFunder (Note: I’ve replaced a small black band over RS’s eyes in the original with a large black square to ensure anonymity).
This same view of clinically assisted nutrition and hydration as ‘basic care’ has been expressed by the Catholic Bishops’ Conference of England and Wales.
“… the administration of water and food, even when provided by tube is a natural means of preserving life. Feeding someone or quenching their thirst is a fundamental expression of solidarity and care. Hence nutrition and hydration, even when clinically assisted, should be understood as elements of care which should be provided so long as they are needed and effective.” ( A Practical Guide to The Spiritual Care of the Dying Person. The Catholic Bishops’ Conference of England & Wales, Dept. for Christian Responsibility & Citizenship London: CTS, 2010, 2.6-2.10)
Although it’s not specifically reported in the judgments, it seems reasonable to assume that his birth family took the view that, as a Catholic, RS would have seen withdrawal of nutrition and hydration as a way of actively ending life, or as a form of euthanasia.
It’s not, in principle, contradictory to believe that you’d only want a life where you could interact (at least minimally) with your wife and children, and at the same time to believe that nutrition and hydration should never be withdrawn so long as they are sustaining life (even if it’s a life you wouldn’t otherwise want to be living).
In the Court of Appeal judgment, however, RS’s wife is reported as saying that RS did not regard ceasing treatment as “removing life” (quoted at paragraph 7, of the judgment), but it’s not clear whether or not, for RS, clinically assisted nutrition and hydration would have constituted “treatment” (as opposed to basic care).
In any case, permission to appeal against Mr Justice Cohen’s decision on the grounds that RS’s Roman Catholic faith had not been adequately scrutinised was refused. Clinically assisted nutrition and hydration was again withdrawn (having been reinstated to allow for this application to appeal).
It was after this, eight days later, that the case then returned to the Court of Protection, this time with a challenge to RS’s diagnosis, and with Dr Patrick Pullicino as an expert witness for the birth family.
Introducing Rev Dr Patrick Pullicino
Although the details aren’t entirely clear (since he was – the judge said – “unaccountably vague” on the matter), it seems that Dr Pullicino first learned about what was happening to RS through Pavel Stroilov, a consultant to the Christian Legal Centre. (Note: Stroilov has written an analysis of this case for Christian Concern here.) Dr Pullicino had also (either shortly before or shortly afterwards) read an article about RS’s case via what he described as an “American pro-life” organisation (LifeSiteNews, here).
After these initial sources of information, Dr Pullicino then had a conversation with RS’s niece, who subsequently went to the treating hospital on Christmas Day 2020 to “say goodbye” to RS. When at his bedside, she made videos of him while under instruction from Dr Pullicino on a Facetime call. He told her how to try to elicit responses from RS and she later sent him the video clips. The videos were made without the knowledge or permission of the court, the hospital or RS’s wife (described as a “deplorable ruse” in the Court of Appeal judgment (para 21)).
Dr Pullicino then emailed Pavel Stroilov as follows:
“I have just facetimed with RS and his daughter [sic: it was in fact his niece]. He looks to me to be in MCS.
He does appear to move his eyes preferentially to one side to voice but he would need time to be assessed by the MCS or WHIM.
As co-director of the Coma and Disorders of Consciousness Research Centre (alongside Jenny Kitzinger), I have carried out research and advocacy in the field of prolonged disorders of consciousness for more than a decade. I have never met any neurological expert who would provide even a preliminary diagnosis of the MCS (Minimally Conscious State) simply on the basis of a single brief FaceTime conversation with a family member at the patient’s bedside – and particularly not one intended to carry weight as evidence in court.
Dr Pullicino does say, both in the email to Pavel Stroilov and in a later letter addressed to RS’s niece, that further assessment is needed, with the implication that his initial diagnosis cannot be definitive. Nonetheless, he was apparently sufficiently confident of his own analysis to allow it to be used to challenge the diagnoses of the treating clinician and independent expert, both of whom had access to the patient’s records (including nursing records, MRI scans, and EEG), which Dr Pullicino did not.
On 27th December 2020, the birth family again applied to the Court of Protection asking to rely on Dr Pullicino’s evidence. The following evening, the duty judge, Mr Justice Holman, put a stay on Mr Justice Cohen’s order (that it was not in RS’s best interest to continue to receive clinically assisted nutrition and hydration) and treatment was restarted pending another hearing before Cohen J, on 30th December 2020.
Prompted by Dr Pullicino’s re-diagnosis of the patient, the independent expert Dr Bell carried out a full reassessment of RS (see paras. 32 and 33 of the judgment), and found that:
“RS is now established in VS [the Vegetative State] with no evidence of progression along the spectrum of PDOC [Prolonged Disorders of Consciousness] towards a MCS [Minimally Conscious State].” (para. 34 of the judgment).
An EEG recording made the day before this court hearing confirmed “a lack of brain activity to various types of stimulation” (para. 34 of the judgment). Dr Bell also examined the video-clips which Dr Pullicino claimed indicated possible consciousness.
“He did not interpret the video evidence as indicative of anything other than a VS [Vegetative State]. Observed features of VS do include brief eye movements towards people and objects, a startle reflex to loud noise and changes in facial expression without apparent cause.” 
How is it, then, that Dr Patrick Pullicino, an experienced and appropriately qualified neurologist, came to give “essentially worthless” evidence about RS’s diagnosis and prognosis in a court of law?
Being ‘open to God’ in medicine
In addition to being an experienced neurologist, Patrick Pullicino is a devout Roman Catholic. On 20th July 2019, he was ordained in St George’s Cathedral, Southwark as a new diocesan priest.
I do not know the religious faiths, if any, of the treating clinician or the independent expert who provided medical evidence in this case – nor that of the judge: internet searches have not turned up any information. It is however readily apparent that Patrick Pullicino’s faith has been central to the way he has lived his life and to the views he has publicly expressed in lectures, professional journals, and in other publications – including the mass media – over many years.
In 2013, in an interview with the Catholic Herald, he reflected on the importance of being open about his spiritual life in the medical context:
“A couple of years ago I started wearing a little crucifix on my lapel, not when I see patients, but just around the hospital. If you do believe in the spiritual, I think it is important to declare yourself.”
The interviewer commented on Pullicino’s rejection of the idea that science can explain everything.
“’That is a very limited view, especially in medicine, when one should be most open to God and a lot of the decisions have to come from the heart as well as from the mind,’ he says. ‘Today there are challenges all around [for doctors] because people are re-defining what is an acceptable quality of life.’” (Catholic Herald, 22nd March 2013)
Pullicino went on to describe his ethical concerns about “switching off” people in a vegetative state:
“A particular challenge in neurology is the question of consciousness and patients with ‘unresponsive wakefulness syndrome’ – previously described as being in a ‘persistent vegetative state’. In the past, many of these people simply wouldn’t have survived, but now that they do there is uncertainty over how they should be treated.
“People say these patients don’t actually have consciousness. The law even suggests they’re not really persons,” says Dr Pullicino. “Modern magnetic resonance scanning shows that some of these patients do have thought patterns. But what do you do as a physician if you have a patient like this and perhaps their family says they want them to be switched off, but you don’t think that’s right?… I think it’s really important as a physician to have your own yardstick and say: ‘That’s as far as I’m willing to go.’” (Catholic Herald, 22nd March 2013)
“In my opinion, the treating physician should have a subjective line drawn, over which they will not cross, even if the patient and the majority-driven respect for autonomy, demand it. Every physician has the right to exercise their own conscience. … [P]art of a physician’s role is to identify for the patient ‘what is or is not good and right for them’ even if it is perceived as paternalistic.” (Pullicino, 2014)
Withholding or withdrawing fluids is “euthanasia”
The illustration at the top of this blog post is a still from the YouTube video of a talk by Patrick Pullicino at a conference called “The Case Against Euthanasia”, organised by Doctors for Life Ireland in 2019.
He was introduced to the audience as “Father Patrick Pullicino”, “a newly ordained Catholic priest” and “chaplain at Springfields Psychiatric Hospital in London” – foregrounding (as he often does himself) his religious – and now clerical – position. He was also described as “a recently retired NHS neurologist and Professor of Clinical Neurology at the University of Kent” and “adjunct Professor of Neurology at Rutgers University of New Jersey” (02:50-03:33 minutes).
His talk on end-of life care is largely a criticism of the Liverpool Care Pathway (LCP) and of the approaches to end of life care that have succeeded it which, like the LCP, also limit clinically assisted nutrition and hydration at the end of life. One of his slides (23.01 minutes) advises that “Stopping hydration will kill”.
As he displays the slide in the illustration at the top of this blog post (31 minutes into the video), Patrick Pullicino describes dehydration and sedation as “effectively euthanasia”.
At the end of his talk,he was challenged by an audience member, Jane Fleming, a Consultant in Palliative Medicine at Health Service Executive Ireland (35 minutes into the video). She said that to align palliative care with euthanasia was “offensive”, pointing out that many people stop drinking at the end of life and that to send everyone to hospital for fluids would simply result in “the medicalisation of dying”. In response, Patrick Pullicino made clear the extent to which he is personally as well as professionally invested in providing fluids at the end of life.
In terms of dying with fluids, I’d say “yes’: if the alternative is that you may be killing somebody off from dehydration, then you do give everybody fluids. My wife, for example, died at home, and she was being looked after by the team that visits. And she was getting drowsy. And they said, “Oh well, she’s getting drowsy, we don’t want to give her any fluids”. I said, “Yes, I want her to have fluids. I don’t want her to die of dehydration.” In the end, I had to go to myward, get a bag, and give her fluids. The last thing I was going to do was see my wife die of dehydration in front of me. You cannot- Patients, when they’ve stopped drinking, if you don’t give them fluids, you know, you dehydrate them and you hasten their death. […] The fact is that if somebody is drowsy and you don’t give them fluids … effectively what you do is you kill them off.” (Video: 37:35mins -39:10 mins)
Pullicino has not been reticent about using words like “kill” and “euthanasia” when referring to withdrawal of life-sustaining treatment, or food and fluids. He told a conference at the Royal Society of Medicine that “euthanasia” accounts for nearly a third of all deaths in the National Health Service (Pullicino in Catholic Herald 22 June 2012) “Patients were killed sometimes because they were ‘difficult to manage’ or because NHS staff faced pressure to free up hospital beds”.
Figure 2: Catholic Herald, 22 June 2012
Dr Pullicino believes that fluids and nutrition should be given to all patients “at all times” – including patients with advanced dementia and those in comas (see Figure 3).
His position is that “the doctor has a moral obligation” (Figure 3) to continue to give fluids and nutrition in situations where death is highly likely to follow withdrawal; this means that Dr Patrick Pullicino has found himself fundamentally opposed to the policies and practices of many medical institutions.
He’s criticised the American Academy of Neurology for “leading [its] membership to accept ever more extreme forms of de facto euthanasia” by sanctioning withdrawal of clinically assisted nutrition and hydration under some circumstances – and draws a chilling parallel with murder in Nazi Germany via a quote from the Office of the Chief Counsel for War Crimes at Nuremberg (Burke, W, Pullicino, P & Coverdale, J. 2007. “The controversy over artificialhydration and nutrition” (letter). Neurology 68(5): 391-2.)
He’s criticised the British Medical Association guidance on decision-making about clinically assisted nutrition and hydration, as “terrible”, because it “facilitates the extension of end-of-life pathways to people with neurological diseases who are not dying” and “perpetuates the myth of ‘best-interests’ which has been shown to be erroneous” (Christian Concern, 15 August 2018)
In a letter to the American Academy of Neurology journal (dealing here primarily with extubation rather than withdrawal of nutrition and hydration), he wrote:
“We have lost the true understanding of how precious life is, regardless of its perceived quality. Neurologists, in particular, who daily care for patients with severe disability should be resolute in resisting that euthanasia become the answer to chronic disabling disease, even when the prognosis appears hopeless. […] Physicians must also not allow the absolute ethical imperative to save life to be subjugated to quality-of-life judgements made on the patient’s behalf. “(Pullicino, P & Burke, W. 1999. “Withdrawal of life support in the neurological intensive care unit” (letter). Neurology 53(9): 2215-6)
Dr Pullicino has spoken up clearly and confidently over the course of two decades for what he believes to be right – even when it flies in the face of medical consensus. He holds fast to the absolute ethical imperative to save life. He opposes withholding or withdrawing fluids because to do so is to hasten death, and this – for him – constitutes euthanasia and is morally unacceptable.
Dr Pullicino as Expert Witness
It is difficult to square Dr Pullicino’s strong and consistently expressed views over at least the last two decades with some of the answers he gave in court.
And yet from everything Dr Pullicino has written in the past, I would absolutely have expected him to see withdrawal of nutrition and hydration from RS as a paradigmatic case of “euthanasia” as he’s named it in the Catholic Herald, in the Catholic Education Resource Centre, and in his YouTube talk to Doctors For Life Ireland. A third of all NHS deaths (he’s said) are “euthanasia”. How could this one not be among them?
Then there was this exchange, under cross-examination from Andrew Hockton (counsel for RS via the Official Solicitor):
This doesn’t sound like the man who believes that “it is important to declare yourself” as a doctor with strong spiritual values; the man who said, “it’s really important as a physician to have your own yardstick and say: ‘That’s as far as I’m willing to go’”; the man who writes of the physician’s “moral centre” and “the absolute ethical imperative to save life”.
Patrick Pullicino is registered with the General Medical Council (GMC No. 1627457). According to their website, he’s been on the Specialist Register for Neurology since 2005 with a licence to practice since 2009: he’s also a recognised GMC trainer. The General Medical Council accepts that doctors have ethical values that inform their medical practice, but also requires that they act with honesty and integrity and within the guidance for good medical practice.
Figure 4: General Medical Council Guidance on “Personal Beliefs and Medical Practice” (downloaded from this GMC webpage here, in effect as of 22nd April 2013)
During the hearing Andrew Hockton (counsel for RS via the Official Solicitor) asked Dr Pullicino whether he had read the GMC Guidance on providing evidence as an expert witness: Pullicino said that he had not. “It may bear some reading”, said Hockton, and quoted from it:
“You must give an objective, unbiased opinion and be able to state the facts or assumptions on which it is based. If there is a range of opinion on an issue, you should summarise the range of opinion and explain how you arrived at your own view. If you do not have enough information on which to reach a conclusion on a particular point, or if your opinion is qualified (for example, as a result of conflicting evidence), you must make this clear.” (from “Acting as a Witness in Legal Proceedings”, para. 13 GMC)
The subsequent cross-examination, which was clearly an uncomfortable experience for Dr Pullicino, went something like this (as best I can report it, given that we are not allowed to record court hearings, so I have to rely on notes made at the time).
This doesn’t reflect well on Dr Pullicino as an expert witness. He doesn’t appear to recognise that his opinion about RS’s diagnosis should be qualified – in part because he is (through no fault of his own) missing key diagnostic information, and in part because there is conflicting evidence (in the reports from other doctors) which he has not attempted to explain or understand in relation to his own findings.
Court of Protection Practice Direction 15A is aimed primarily at lawyers who instruct expert witnesses, so in this case it should have informed the actions of the legal team behind Charles Foster, who acted as counsel for the birth family, whose witness Dr Pullicino was. It sets out some rules concerning expert evidence, including the following:
The expert’s report should provide: “objective, unbiased opinion on matters within the expert’s expertise, and should not assume the role of an advocate” (§ 4).
An expert should make clear when they are “not able to reach a definite opinion, for example because the expert has insufficient information” (§ 6(b)).
I don’t agree with Pavel Stroilov’s assertion (in an article for Christian Concern) that Pullicino’s evidence “was severely criticised for not being a full expert report” (which it obviously wasn’t). Rather his evidence was criticised for being, as the judge said, “unqualified” (para. 25) in the sense that he failed to qualify his conclusion that RS was displaying behaviours indicative of the minimally conscious state, simply restating this without reservation, and without explaining the reasoning that led him to this position. He did not acknowledge any ways in which his own knowledge of RS’s medical condition might be limited or circumscribed in ways that could perhaps affect his assessment, nor did he attempt to explain why it might be that other experts considered RS to be vegetative. It is widely recognised that differentiating between the reflex movements of the vegetative patient and the purposeful movements of a person in a minimally conscious state (at the lower end) can be challenging, even for trained professionals with all the information at their disposal (see our article on the ‘diagnostic illusory’), yet Dr Pullicino seemed confident he’d achieved this with 3 minutes of video-recording. This was simply unconvincing to me, and (clearly) also to the court.
Dr Pullicino also declined (as evidenced above) to engage in any discussion of the ways in which his diagnosis of RS might or might not have been influenced by his Catholic values, and in particular by his oft-stated conviction that withdrawing clinically assisted nutrition and hydration would constitute “euthanasia”. Instead, incomprehensibly to me – having read his publications and listened to his lectures – he stated that RS is “not undergoing euthanasia” if food and hydration were again withdrawn, and that his own religious beliefs had no bearing at all on his approach to the evidence and on his “objectivity” as a doctor.
From what I know from reading his professional publications, Dr Pullicino would have been a good witness in court for anyone wanting evidence about the ethics of continuing or withdrawing life-sustaining treatment (especially nutrition and hydration) from a Catholic perspective.
Instead, he found himself in court as an expert witness on a very different matter: whether a particular patient was correctly diagnosed as vegetative, or whether he was displaying behaviours indicative of the minimally conscious state. I don’t know (because I don’t have access to the court bundle which would surely have included his CV) what previous experience Dr Pullicino has of diagnosing where a patient falls along the spectrum of prolonged disorders of consciousness. Perhaps he is simply inexperienced in this quite specialist area, and mistook (as many people do) random reflexive movements for purposive ones.
In court, Dr Pullicino said several times that he wanted to “give the patient the benefit of the doubt”. I took this to mean that if there were any doubt as to RS’s diagnosis (although in fact, there wasn’t), then he saw it as beneficial to RS to proceed as though RS was conscious, which he took to mean continuing life-sustaining treating and ensuring to RS the opportunity for recovery and rehabilitation. On another occasion, he said: “I’m batting for the patient, because they won’t have a chance to do further tests if the court order goes through”. I got the impression that, for Dr Pullicino, what was most salient in this case was not in fact the correct diagnosis for RS (i.e. whether he was vegetative or minimally conscious) but that his focus was instead (as he said in the email) on his commitment to the view that “[t]here is no way he should be left to die”. The diagnostic claim advanced by Dr Pullicino seemed to me subordinate to his more fundamental ethical position that all human life matters and that no patient should have food and hydration withdrawn as long as it is effective in sustaining their existence. But that, of course, was not an argument that would have traction in court.
Why did Christian Concern proceed to court with such clearly inadequate evidence: did they believe they could help a desperate (birth) family and save RS’s life? Possibly. But it may also be that legal cases like this are pursued less with the expectation that the individual patient can be saved, and rather, as Jenny Kitzinger has said, “with the view that these cases (whether or not they are won or even ‘winnable’) are a valuable strategic way of carrying on and promoting a broader agenda.” The case achieved publicity for Christian Concern and the Christian Legal Centre and it adds to the overarching narrative they promote of a court system that is anti-Christian and an establishment that is against them. They have also used the RS case to advance pro-life claims and linked it with another of the cases they were involved in, the Alfie Evans case. The Christian Legal Centre’s Roger Kiska writes (here) with reference to both cases that “semantics aside, this is euthanasia” and (later) “state ordered killing”.
Why was Dr Pullicino’s evidence admitted to court when the paucity of this evidence must have been apparent to the court from an early stage? Counsel for the Trust (Vikram Sachdeva) submitted that Pullicino’s evidence was inadmissible and that there was no need for oral evidence from him. The judge, however, believed that the birth family was entitled to hear from the treating clinician and independent expert why Dr Pullicino was wrong (if he was). I could see his point, but would have wished that this had been possible outside of court in a round table meeting.
My over-riding sense having observed these hearings was that the Court of Protection had been hijacked and subverted in pursuit of an adversarial campaigning agenda that is alien to its usual practices and procedures. It was disappointing and somewhat demoralising to see this obviously doomed attempt to ‘rescue’ RS take up so much time and energy in the courtroom, when there is such a backlog of other important work for the court to do.
I hope those with oversight of the Court of Protection might consider how this sort of situation could be avoided in future. Perhaps there might be a more robust approach to eliciting, acknowledging, and respecting statements of conscientious objection among some doctors to particular (lawful) courses of action and an open consideration of the implications of this for their role as expert witnesses. In my experience, it is quite common for clinicians to have ethical qualms about removing nutrition and hydration from people who are not otherwise within hours or days of death, but this is something they may not feel comfortable expressing without support.
Perhaps, also, it might be possible to insist on the proper application of existing COP rules concerning expert witnesses: COP Rule 15.2 (Restriction on filing an expert report) and COP Rule 15.5 (which lists the actions to be done when a party applies for a direction to file expert evidence). With reference to Rule 15.2, I have observed several hearings at which parties have asked for permission to instruct an expert witness and the judge has refused (it was not considered “necessary”). Clearly no such permission was requested in this case, but I imagine that, if it had been, permission might well have been refused. Alternatively, if permission had been granted then, in accordance with Rule 15.5 it would at least have been clear to the birth family’s legal team that a proper letter of instruction should have been prepared detailing (for example) the questions the expert was expected to answer – and Dr Pullicino would also have been given access to all the relevant information on which to base his assessment of RS, which might have resulted in better quality of evidence from him.
Ultimately, however, if organisations like Christian Concern are willing to spend time and money on conducting their ‘pro-life’ campaigns via courtroom litigation, and can find experts willing to act for them, there may be very little the Court of Protection can do to prevent them.
Celia Kitzinger is co-director (with Gill Loomes Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia
 I think this is a typo for either GCS (which stands for Glasgow Coma Scale) or for CRS (which stands for Coma Recovery Scale). I don’t know whether this error appeared in the original email from Patrick Pullicino, or whether it was introduced by the judge.
 In an earlier blog post, Jenny Kitzinger, co-director of the Coma and Disorders of Consciousness Research Centre, analysed a video clip of RS that was circulated on social media, explaining how it is that non-experts might read it as evidence of consciousness, but why – in fact – it does not demonstrate any behaviours inconsistent with a diagnosis of the vegetative state.
 Pavel Stroilov, who was also in court, has published a piece which includes a list of the questions he noted down as having been directed to Dr Pullicino (but not Pullicino’s answers to them). I recognise all of the questions he cites, but Stroilov’s wording and my own are quite different in ways that may be significant. For example, where I have “You’re an ordained priest – does that have any bearing on the objectivity of your views?”, Stroilov renders this same question as: “Are you an ordained priest? Would that affect your objectivity?”. Where I have “You’ve acknowledged that you haven’t seen the clinical records, the MRI, the EEG, or other tests”, Stroilov has: “You have not seen the clinical records, have you? You have not seen the results of the MRI, EEG, or any other tests, have you?”. In both cases, he has two questions where I have only one, and the use of tag questions – in his version, but not in mine – also adds to the sense of ‘barrage’ of interrogation. Without the recording, there is no way of knowing whether my version or Stroilov’s is more accurate, but I note that his rendition (which also omits Pullicino’s responses) certainly fits better with his claim that Pullicino was “machine-gunned with tough questions from two barristers and a judge, rarely given a split-second to answer” – which was certainly not my impression.
 This is factually incorrect in relation to English law. People in coma, vegetative states and minimally conscious states are ‘persons’ in English law.
Previous blogs – and the mainstream media – have reported that RS ( the person at the centre of a ‘right to die’ case) was Polish, that the members of his family who wanted life-sustaining treatment to continue are Polish, and that the Polish government was seeking his return to Poland in order to remove him from the jurisdiction of the English Court of Protection: see the blog posts by Jenny Kitzinger (here) and Alex Warren (here).
This information was very nearly prevented from being in the public domain by a proposal that reporting of the nationality of RS and his family should be prohibited. (It was suggested at one point that ‘European’ could be substituted for ‘Polish’.)
At virtually every Court of Protection hearing, counsel have prepared an injunction that prevents members of the public from reporting certain information revealed in court. If we disobey this injunction (which goes under the rather Orwellian name of a ‘transparency order’), we may – as we are told on the front page of the standard document – “be found guilty of contempt of court and may be sent to prison, fined or have [our] assets seized“. This is sufficiently terrifying to some observers that they flatly decline to write blog posts for this Project for fear of inadvertently breaching some aspect of this injunction, which is written in a style impenetrable to most non-lawyers. (For more information about transparency orders and what they mean, see my earlier blog post here.)
The purpose of the transparency order is to protect the person at the centre of the case (“P”). People are prevented from naming P or P’s family and from communicating by any means (orally, in writing, electronically via social media or in any other way) information that “identifies or is likely to identify” that P is the subject of Court of Protection proceedings, that anyone is a member of the family or friend of someone subject to court proceedings, and any information that identifies or is likely to identify where P or their family and friends live, or are being cared for, or their contact details. The transparency order also usually covers the health and social care staff caring for or treating P – but not the names of any independent experts involved in the case.
This ‘standard’ transparency order can be varied. Sometimes family members ask the court to permit identification of P – and themselves – because they believe P would want to have their name used in support of a campaign for better treatment or human rights of people like them. I watched one hearing where the judge listened to P’s husband argue the case that his brain injured wife, Michelle Davies, would want to lend her name to the cause of ending the “inhumane restrictions” to visiting loved ones in care homes during the pandemic. He “believes strongly that Michelle would want for something positive to come out of this dreadful situation that she finds herself in and this case presents an opportunity for that to happen”. And so, in that case, the transparency order was varied to permit Michelle Davies’ name to be used (and I blogged about it here).
In other cases, the ‘standard’ transparency order is varied to make it more restrictive: in some cases I’ve been told that it’s not permitted to give P’s exact age, or to refer to an aspect of their behaviour (e.g. sexual practices) or identity (e.g. that they are transgender). Sometimes we’re not allowed to name the public bodies involved – typically, the Trust, the local authority or the Clinician Commissioning Group. This was the case in a hearing attended by several observers, and by the PA journalist, Brian Farmer. It concerned a woman with severe learning disabilities who’d been raped and was pregnant: the Trust had applied to court for authorisation of a Caesarean section (which was granted). You can read about the case in the blog by Adam Tanner who observed the hearing, and in the judgment (here). Obviously the identity of P and her family were covered by the transparency order, as is standard practice. Unusually, though, the names of the NHS Trust and Local Authority responsible for P’s care, as well as the name of the police force investigating her rape, were also covered by the transparency order.
The journalist, Brian Farmer challenged this extension of the transparency order, and he helpfully contributed a blog post (here) which provided a model letter to the judge about why Article 10 rights to freedom of information and freedom of expression should – in the facts specific to this case – trump P’s Article 8 rights to privacy (which were not really at risk in this case, according to Brian Farmer). As I wrote in my introduction to that blog post: “We have reproduced Brian Farmer’s letter here (with his permission) because any of us may in future want to challenge reporting restrictions in the Court of Protection and his arguments are ones we can all learn from.“
And so, when, on the first day of a two-day hearing, I found myself listening to a discussion between the judge and counsel about whether or not P’s nationality should be covered by the transparency order, I felt able – thanks to Brian Farmer – to intervene to try to ensure that we were not prohibited from reporting this information.
What follows is the letter I sent to the judge, Mr Justice Cohen, before the start of the second day of the hearing, questioning the necessity and appropriateness of preventing the identification of Poland as the country from which RS and his family originate and which was seeking his return.
A letter to the judge
31 December 2020
CoP Case No: 13684602 – transparency order
I write on behalf of the Open Justice Court of Protection Project of which I am co-director. We are a citizen journalism initiative aiming to enhance and support transparency in the Court of Protection by observing and reporting on hearings via our blog (here).
I would respectfully argue that the proposed revision to the existing transparency order to cover P’s nationality makes it too wide. There was no restriction on reporting P’s nationality in the transparency order dated 26 November 2020 (sent to me on 15th December 2020). I believe it to be in the public interest that we should continue be allowed to identify the nationality of the person at the centre of this case. My reasons are set out below.
1. I did not hear any evidence in court that revealing P’s nationality might cause harm to him or to his family such that his Article 8 right to privacy about this aspect of his identity should override the Article 10 public interest right to freedom of information.
It is unusual for a judge to restrict reporting when none of the counsel who addressed you on the matter on 30 December 2020 argued for a reporting restriction on this matter – and two of them argued against it. None gave evidence about the risk of identification. According to the census of 2011 (the most recent I can find) the population of Plymouth [University Hospitals Plymouth NHS Trust had been publicly identified as the responsible Trust] is 264,200 and the most common language spoken (after English) is Polish (0.9% = 2,307 people) (http://localstats.co.uk/census-demographics/england/south-west/plymouth). The fact that he’s male, married, middle-aged and has [number deleted since it is covered by the revised transparency order] children obviously narrows the field and I accept it is possible that he might be identified as a result. I have also heard his wife say (via her translator) that she does not want the family to be identified as Polish – but her reasons were not provided in open court. My understanding is that if the court is to restrict reporting of an aspect of P’s identity there should be compellingly important reasons (such as evidence of the risk of harm to P and/or to his family, and how that harm will arise) sufficient to override the public interest in access to this information.
2. P’s nationality is already in the public domain in both English and Polish language publications– including newspapers, blogs, and social media such as Twitter and Facebook.Please see Appendix for a sample located via a quick google search. The Life Site News articles have been re-posted on Facebook and Twitter more than 1000 times since 24th December 2020. The article “Dying for a Drink” has had 102, 513 reads. As counsel said, “the cat is out of the bag”. As Mr Justice Eady has put it:
“The Court should guard against slipping into playing the role of King Canute. Even though an order may be desirable for the protection of privacy, and may be made in accordance with the principles currently being applied by the courts, there may come a point where it would simply serve no useful purpose and would merely be characterised, in the traditional terminology, as a brutal fulmen. It is inappropriate for the Court to make vain gestures” (para 34Mosely v News Group Newspapers Ltd.  EWHC 687 (QB))
3. It is in the public interest to receive correct factual information about the case, and for members of the public to have the opportunity to engage with a wide range of perspectives on a key matter of public concern.
The proposed transparency order prohibiting publication of anything which identifies or risks identifying P’s nationality would impede that because it would mean we cannot quote and challenge any publications which refer to P’s nationality – because to do so would link our commentary on the case with articles identifying P’s nationality and hence run a high risk of revealing his nationality to our readers. This is of particular concern because, to date, the publications that mention P’s nationality appears to originate from (and often link to) the Life Site News articles, which are written from a ‘pro-life’ religious perspective and also contain inaccuracies. It is in the public interest for us to be able to challenge the factual and legal inaccuracies that have appeared concerning this case.
The Open Justice Court of Protection Project would like to publish blogs about this case which offer a different perspective – including one from a media studies specialist analysing publications about this case to explore the way in which religious perspectives present law and ethics (impossible if she cannot quote from publications mentioning his nationality). I note that many of these publications are very critical of P’s wife for the position she has taken in supporting the decision to withdraw CANH: that is, unfortunately, a harm that has already befallen her and it is important that the public are offered alternative analyses on the role of relatives who support treatment withdrawal: this is a key area of my research expertise in the Coma and Disorders of Consciousness Research Centre and something I have published about widely in academic journals.
We would also like to be able to respond to online publications to challenge the narratives about death following withdrawal of clinically assisted nutrition and hydration. I was one of the lead authors of the National Guidance on Clinically Assisted Nutrition and Hydration). Decisions about withholding and withdrawing life-sustaining treatment will always be of enormous public interest and concern.
Insofar as the proposed transparency order will restrict and prohibit our engagement with other members of the public and (social) media outlets due to the fact that they are referring to P’s nationality, this stifles the public debate so crucial to the promotion of transparency and open justice in a democratic society.
4. It is difficult to report on a key part of the cross-examination of Professor Pullicino without referring to the Life Site News article about which he was cross-examined (which reveals P’s nationality).
It is in the public interest (and enhances understanding and respect for the rule of law) for the public to understand how the court uses expert witnesses. The Open Justice Court of Protection Project has previously addressed this (e.g. “When Expert Evidence Fails”) and would expect to do as part of our coverage of the current case. I have considered how it might be possible to write about this part of his cross-examination without explicitly referencing the article containing reference to P’s nationality, and although this would be possible, there is an obvious “risk” that anyone reading it would be able to use a google search facility to identify the article concerned and might then read it and discover P’s nationality. Professor Pullicino was cross-examined about whether or not he believed that withdrawal of CANH from P was “euthanasia” (a term in the title of the article) and about the date on which he carried out the FaceTime conversation with members of P’s family (either the 24th or the 25th December 2020, which related to a claim made in the article). It is not difficult to see that, in conjunction with other information about the case, an averagely competent google search would readily locate the article. The only way in which this risk could be avoided would be to omit key parts of the cross-examination. There has been, to my knowledge, no evidence presented in court to justify restricting the public’s Article 10 rights to write about and to read about this cross-examination in a public court of law.
5. There is a public interest in open discussion and debate concerning the operation and strategies of the cross-national ‘pro-life’ religious organisations.
This discussion is significantly constrained if mention of Poland is prohibited. The media has already discussed the investment of both Poland and Italy in ‘right to life’ court hearings in the UK (“Why are Italy and Poland so invested in baby Alfie case?”, Express, April 26th 2018) and the BBC reported that the President of Poland, Andrzej Duda, tweeted “Alfie Evans must be saved”. Reports of the current case have explicitly made the connection with the Alfie Evans case (e.g. referring to Lady Justice King – one of the judges who denied permission to appeal in this case – as someone “known for her role in the state-sanctioned killing of Alfie Evans” and Bruno Quintavelle, who apparently has some formal role in the current hearing, acted for Alfie Evans’ family. The role of the Christian Legal Centre and its cross-national links (especially with Poland) is exemplified in this case which involves the intervention in a UK court in the form of submissions from the Polish Ministry of Justice and the Polish Ministry of Foreign Affairs, plus oral interventions in court from the Polish Embassy. The public has a right to know that Poland is involved in this way (again) in the UK courts, and the connections with the cross-national ‘pro-life’ religious movement.
Given these matters of weighty public importance, I would like to invite the court to reconsider whether there is sufficient evidence of risk of harm caused to P (or his family) by breach of his Article 8 rights of privacy to justify restricting the public’s Article 10 rights to freedom of expression and freedom of information in this way.
Co-Director, Open Justice Court of Protection Project
Permitting reference to Poland
By the end of the first day, it had seemed to me very likely that the judge would prevent identification of Poland in the amended transparency order – and that’s why I wrote my letter.
My letter was discussed at the beginning of the hearing the following day. Counsel for the Official Solicitor spoke in support of the view that Poland should not be identified, due to concern that RS’s wife and children would then be readily identifiable. Counsel for the birth family took the position that Poland should be identified. Counsel for the Trust expressed the view that, given previous media reports that RS was Polish, “that bird has already flown“.
In the end the judge took the view that “I am persuaded that I think I have to allow publication of the nationality“. The arguments he seemed to find most persuasive were “the involvement of Dr Pullicino and the sources of information that he has gone to to get information about the case” (to which he intended to refer in his judgment, meaning that publications identifying RS as Polish would be easily traceable); and the fact that the Vice Consul of the Polish Embassy had addressed him: “so I think things have moved on and I think it is now proper that I should permit reference to the country involved“.
In an effort to protect RS’s identity and avoid ‘jigsaw identification’, he then ordered that although his nationality could be reported, the number of children he has should remain confidential. Counsel pointed out that the number of RS’s children had already been reported in a Court of Appeal judgment, published on BAILLI (Z v University Hospitals Plymouth NHS Trust & Anor (Rev 3)  EWCA Civ 1772 on 23 December 2020. The court arranged for that judgment to be removed from BAILLI, edited to delete reference to the number of RS’s children, and reposted.
While the number of children RS had fathered was pretty much irrelevant to the key issues in this case, it would have been very difficult for all of us who observed this hearing and have blogged about it for this Project do so in the terms we have if there had been a prohibition on saying anything that “identifies or is likely to identify” the nationality of P and his family. As I said in my letter to the judge, given the weighty matters involved, that would have been an unjustifiable breach of the public’s rights to freedom of information.
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @kitzingercelia