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 now in hospital. 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 it seems 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
Editorial note: For an earlier blog about this same case, with a focus on the use of a video of P on social media to try to challenge the decision of the court, see Jenny Kitzinger’s post here.
A recent Court of Protection case concerned a middle-aged man, “RS”, who suffered an out-of-hospital cardiac arrest but survived, following CPR, with severe irreversible brain damage. The clinical team and RS’s wife of seventeen years believed that it was in his best interests for life-sustaining treatment to be withdrawn. They were opposed by RS’s other relatives, including his sister, mother, and niece (who had not spoken to him for eight years). The Court found in favour of RS’s wife and the NHS trust. After a number of appeals and other hearings, treatment was withdrawn and RS died.
To the ICU clinician, the facts of this case are notable for their ordinariness. This is obviously an unimaginably sad situation for the person and for the family involved, but this sort of clinical situation evolves every day in intensive care units around the country. According to a recent National Confidential Enquiry into Perioperative Death (NCEPOD) report, ambulance staff attempt resuscitation in 30,000 out-of-hospital cardiac arrests per year; only 1 in 10 patients survive to leave hospital. Of those who die in hospital, three-quarters of these deaths follow a decision to withdraw life-sustaining treatment due to poor neurological prognosis. Such a situation — a patient ‘kept alive’ but with a likelihood of neurological and functional deficits — can arise out of many different illness and injury processes: the young motorcyclist who crashes and receives a traumatic brain injury; the mother-of-three who suffers a devastating subarachnoid haemorrhage from an aneurysm she never knew about; the grandfather whose open-heart surgery involves unforeseeable complications and who suffers brain damage despite the best efforts of the healthcare team.
The process of decision-making in such cases is relatively established. Extensive clinical tests are performed to determine the prognosis. In relation to out-of-hospital cardiac arrest, evidence suggests this should not be attempted before seventy-two-hours from admission. In other cases, such as stroke or traumatic brain injury, the exact timing when a prognosis becomes ‘certain’ (at least, as certain as it can be) may be weeks or even months. In parallel, the family is approached to establish as far as possible the patient’s views and wishes with regard to survival with any degree of functional deficit. A common misconception that can lead to discord is that relatives, or the ‘next of kin’, have a legal right to decide for or against medical treatment on behalf of the incapacitated patient. Unless they have been appointed as power of attorney for health and welfare no such right exists in the UK.
In the majority of cases, where clinicians approach this sensitively, the parties involved will enter a process of shared decision-making. The healthcare team impart their knowledge and expertise of the clinical state of the patient, and the expected prognosis, even if imprecise; the family contribute their expert knowledge of the individual — what their values, wishes beliefs and feelings are. This combined expertise allows those involved to find the right way forward. For example: the clinical team might say:
‘The best case scenario is that he would never walk or talk again, but he could have some form of interaction, in a situation where he receives full-time care for his basic needs; the worst case scenario is no further recovery and he remains in a coma, reliant on artificial feeding.’
Understanding the clinical scenario, the family might respond:
‘He would not want that. We can be sure he would not want that.’
However, sometimes no consensus can be reached. This may be because, despite how sensitively the team approach this conversation, the family simply cannot accept the bleak facts of a patient’s prognosis, or — more rarely — because clinicians do not feel it is ethical to withdraw treatment despite the family’s articulation of a patient’s views. Occasionally, this can be solved with the passage of time, or the communication skills of an experienced clinician. I’m reminded of a talk I attended some years ago by an intensivist in New Zealand, relating the case of a young man who’d received a devastating brain injury in a hunting accident. After many days of showing the family brain scans, electroencephalogram traces and the like, they remained unaccepting of what this really meant – hoping, as many do, for a miracle. Eventually the consultant sat the family down and said simply, ‘His brain is fucked. He is gone. He’s never coming back.’ After what must have been an eternal silence, the man’s father replied through tears: ‘Thank you. I get it now.’
The situation which arose in the case of RS was more difficult because family members were in conflict about what RS would want, given his clinical situation (and then also challenged the treating team, and court-appointed expert, as to his diagnosis and prognosis). Disagreement about what a patient would have wanted, as in the RS case, exposes a unique challenge to the decision-making process: that many of us will express different viewpoints at different times in our lives, or to different people.
Professor David Menon, with whom I had the pleasure of working at the Neuro-Critical Care Unit in Addenbrooke’s Hospital, Cambridge, articulated this memorably towards the end of a 2017 talk available here. Menon used the analogy of the rock band Bon Jovi, contrasting quotes from the protagonist Tommy in two songs. In the 1986 hit Livin’ on a Prayer, they say:
‘We’ve got to hold on to what we’ve got
It doesn’t make a difference if we make it or not
We’ll give it a shot’
By contrast, the 2000’s It’s My Life includes the lines:
‘I don’t want to live forever
I just want to live while I’m alive’.
This exemplifies two very different perspectives from the fictional Tommy at different points in his life: life at any cost, even a willingness to accept a catastrophic outcome for a tiny chance of miraculous recovery, versus a prioritisation of quality of life — living rather than existing.
Working in an intensive care unit forces one to confront the brutal unfairness and fragility of life. I have often reflected on my own mortality and made sure those closest to me are aware of my wishes. Have I written these down, in an advance decision or by appointing a nominated power of attorney? Like many – perhaps in my case deluded by the invincibility of relative youth – I have not. As much as it is encouraged by healthcare staff, the legal profession, and patient advocacy groups, I think it is naïve to imagine that we will be able to avoid these conflicts by widespread public adoption of advance decisions or nominated powers of attorney.
To the contrary, I suspect that conflicts like the case of RS will become an ever more present part of the fabric of 21stcentury intensive care. We are already seeing this in paediatrics: the high-profile cases of Charlie Gard and Alfie Evans share troubling similarities with the case of RS, particularly the involvement of third parties — foreign governments, pressure groups and independent ‘experts’ who profess opinions that, while in stark contrast to the medical consensus, are the answers to relatives’ prayers. In the case of RS, the court heard the unsolicited evidence of the Reverend Dr Patrick Pullicino, a consultant neurologist and ordained Roman Catholic priest. Despite having never met RS nor reviewed his notes or scans, and having only seen a total of 3 minutes of video clips, Dr Pullicino testified that RS had ‘a 50% chance of being independent in his own home.’ Cohen J was remarkably restrained in his criticism of Dr Pullicino, whose evidence he rejected as ‘vague’ and ‘unsatisfactory’.
The external involvement in this case didn’t stop there. RS was a Polish citizen. The Polish government granted RS a diplomatic passport in an attempt to remove him from the jurisdiction of the UK courts. In Polish and US media reports, RS was described as a ‘euthanasia victim’. A Polish politician even accused UK doctors of wanting to harvest RS’s organs, declaring them murderers. Such rhetoric from outside sources is reminiscent of the Gard and Evans cases, although fortunately in this case the family and clinicians were spared the painful scenes of crowds of protesters outside police-guarded hospital entrances and online death threats to medical staff.
Personally, I take a dim view of such interventions. The most charitable view of their motivations is a genuinely held belief in the prevention of a needless death or a miscarriage of justice. But the consequences on the family, already undergoing the most unimaginable agony, seem to be ignored. How must RS’s wife and children have felt when lawyers and politicians in a country he hadn’t been to in decades tried to take him away from them at the end of his too-short life? But of all those ‘third parties’, I find the actions of ‘experts’ like Dr Pullicino most concerning. Doctors have a responsibility not just to their individual patient but the public as a whole to be objective. The GMC guidance on acting as an expert witness reads almost as an exact contradiction of Cohen J’s description of Pullicino’s conduct. In particular, the phrases ‘you have a duty to be impartial and objective’ and ‘you must not allow your views … to affect the evidence you give’ are notable. What are the motives of such interveners? In some cases, it is clear that the patient concerned is merely a pawn to advance a personal, political, or other societal agenda.
Ultimately, I fear that the UK may be heading towards a ‘perfect storm’. As medicine — and especially intensive care — continues to push the boundaries of what can be ‘survived’, the public expectation of what can be recovered from grows exponentially. And when cases are tried on social media before they even reach the courts, the chances of such ugly, public confrontations as in the above-discussed cases will only increase. I do not pretend to have answers or solutions to this reality. It may be a pessimistic viewpoint, but we — doctors, lawyers, and the public — can only prepare for and mitigate the potential harm to all involved if we are willing to entertain it.
As doctors we must be humble when determining prognosis and rely strictly on the evidence base, and be sensitive and patient when dealing with families. The best clinicians I have worked with make every decision on consensus, welcome outside opinions, and ensure the individual patient is always at the centre of the conversation. When this fails, medical mediation is a useful strategy. For example, this story, from a parent, is a powerful example of what this can offer. But if all routes have been exhausted, the Court of Protection is nothing to be afraid of. The clue is in the name — the court protects the patient’s life and dignity from infringement, but also protects clinicians from accusations of wrongdoing. If there is an upside to the growing number of high-profile cases regarding ICU patients at the end of life, we can only hope that it is an eventual increase in public awareness of the reality of death, and what medicine can — and cannot — reverse, and perhaps a prevention of some of the trauma experienced by the families of those individuals who find themselves in such tragic situations.
Alex Warren is a junior doctor training in anaesthetics with an interest in intensive care. This post represents his personal views only and not those of any NHS or other organisation. He tweets @alexfwarren
An earlier blog post by Jenny Kitzinger concerns the case of “RS”, a patient in a prolonged disorder of consciousness.
Although his wife supported the Trust’s view that continuing clinically assisted nutrition and hydration was not in RS’s best interests, other members of his family disagreed.
After the judge had ruled that clinically assisted nutrition and hydration could be withdrawn, RS’s niece made a video of RS, an extract from which was circulated on social media. Other short clips were subsequently used as “evidence” in court.
A neurologist (Dr Pullicino) told the court that the video clips showed that RS was (or was becoming) minimally conscious, such that court should reconsider the decision to withdraw treatment.
Neither the treating clinician, nor the independent expert witness (Dr Dominic Bell, Consultant in Intensive Care Medicine) saw any evidence in the videos, or in their subsequent re-examination of RS, to support the view that RS was other than ‘vegetative’.
The judge wrote:
“I did not find Dr Pullicino a satisfactory witness. He was at times disinclined to answer the questions he was asked. He had failed to make any notes of any conversations about the case… He kept no records of how often RS did not respond to instructions given by his niece. He seemed unclear as to what reports he had read… He was untroubled by any of these deficiencies. […]. I do not think I can place any weight on the evidence of Dr Pullicino.” (Z v University Hospitals Plymouth NHS Trust & Ors (Rev 1)  EWCOP 69)
This case raises several very important issues.
Use of video
Like most other people, I consider it is wrong to place any video (or still photographs) of a person into the public domain without legally valid consent. In this case it was both unlawful (in breach of the transparency order) and immoral, and there was no legitimate defence for it.
On the other hand, I do not think that family members or friends, should be forbidden to take photographs or videos of a person in a prolonged disorder of consciousness (or a person otherwise unable to give consent).
Emotionally, from the point of view of family and friends, photographs and videos help maintain a relationship with the patient which will usually, if not always, be in the patient’s interests.
It can also be of great help in establishing a continuing and trusting relationship between the family and the clinical team. Often a family member will report and observation and the team will reply, more or less subtly, “Well, we have never seen that.” with an implication of “We do not believe you”.
If the family can video what they see, the video can then be shared with the clinical team, who can the demonstrate an attitude of collaboration – “Thank you, and I am glad you have got this for us. We can look at this together”. The family feel that they are being believed. The clinician can then review what has been observed and discuss with the family what is recorded and what it means.
In one case [MX] I have seen, where the patient was said to be in a prolonged disorder of consciousness, the family’s observations were repeatedly discounted by the clinical team. I looked at the videos and, in my opinion, they showed undoubted quite complex behaviour only explicable on the basis of full, conscious awareness. When I assessed the patient, my own observation concurred with those of the family.
The case of MX was not a case where withdrawal of gastrostomy feeding and hydration was being contemplated. However the importance of video evidence as part of the whole bundle of evidence was highlighted in a legal case in 2015 – St George’s Healthcare NHS Trust v P and Q  EWCOP 42 – where a video prompted re-evaluation of the diagnosis that the patient was in the vegetative state. The judge said that the video evidence “provided a watershed insight to the proper conclusion in this case.” Although categorisation of a prolonged disorder of consciousness is no longer necessary (and was never really valid), this emphasises that video evidence can give new or better information.
Thus, video clips taken by the family can be invaluable diagnostically, either providing further evidence in support of the existing diagnosis or, on occasion, showing that observations made by others are true, potentially altering the diagnostic evaluation of the patient’s state.
So, I would not only allow but would actively encourage video recording, especially by family members, and especially of observed behaviours the family believe may not have been seen or noticed by clinical observers. If this is openly discussed at an early stage, the clinical team can, at the same time, point out that any recorded material must not be disseminated beyond those people who have a legitimate personal relationship with the patient.
Now, or then?
There is often an elision between the meaning of an observation in terms of a patient’s current state, and its meaning as a predictor of a future state, the prognosis.
In this case, the term ‘minimally conscious state’ may have been used in two ways. The first, straightforward way was to argue that being in the so-called minimally conscious state was, in its own right, a strong reason to continue clinically assisted nutrition and hydration. The argument would be that the actual amount of awareness was sufficient to warrant prolongation of life, even if there were no change.
The other argument, articulated explicitly in this case I think, was that being in the minimally conscious state carried an implication of further improvement so that it was premature to withdraw treatment.
This distinction – that it is the prognosis given his current clinical state that is important – is not unreasonable. Unfortunately, the evidence concerning the prognostic value of being in a minimally conscious state at seven or eight weeks after global cerebral hypoxia is very poor. There are no studies including an adequate number of patients for a sufficiently long time (first six months) with sufficiently frequent and consistent quality examinations to allow any useful prediction to be made.
What evidence there is, coupled with accumulated personal experience of many clinicians, would suggest that the extent of recovery starting seven weeks after global hypoxia would be small (i.e. not to any sustained level of social interaction), and even that degree of change would be unlikely.
In sum, when considering a person’s clinical position, one must separate out:
what implications the clinical observations have for decisions, assuming it will not change, from
what implications it has for prognosis;
and when considering prognosis, one must, additionally, consider both:
what the probability and extent of any change might be, and then
whether achieving the highest probable future state would alter the current decision.
Coma, responsiveness, and consciousness
Many of the clinical terms used in cases such as this are not clearly defined, because they arose in an era when fine distinctions were not needed.
The ability to prevent death through medical interventions has exposed the fact that death is not a single event. As someone dies, different systems stop working at different times; for example, it is well known that hair follicles produce hair for a day or so after ‘death’, and corneas are still sufficiently alive to be used some hours after death.
In this case, four clinical phenomena need to be considered: (a) responsiveness, which needs to be distinguished from (b) (self-)awareness; and, at the same time, one needs to be aware of two characteristics of all living things: (c) fluctuation, in the level of function and activity of all bodily systems, and the occurrence of (d) spontaneous and automatic movements, as a normal phenomenon.
All living things are responsive, in that changes in the environment or changes within the organism cause a response in the organism. A loud sudden noise causes a blink or startle reaction; pain, from pressure on a nail bed, causes withdrawal of a limb; a bright light in an eye may cause the pupil to constrict and the eyes to close; warmth and soft music may cause relaxation; and cold and noise may cause increased muscle tension. There are innumerable other examples of responsiveness.
The great majority of responses are automatic, and we all have them most of the time. You will automatically look at something moving to one side of you, or at a face, without any conscious willing of the movement or intention to move.
There are two important points to remember:
Someone who is defined at comatose, either through accident or due to anaesthesia, with still show responses;
Responsiveness does not in itself require any level of awareness. Someone will only be totally unresponsive when they have died completely.
Awareness requires or implies an ability to extract meaning from a stimulus, and then to use this meaning to formulate a movement that itself has a meaning or goal. Being hit by a reflex hammer just below the knee leads to an extension of the leg – a reflex or automatic response. Telling the person to stop, or holding the leg fully extended are two behaviours that show (a) that the subject has appreciated that the other person is hitting him deliberately and (b) that the subject is able to work out tactics that reduce the probability of a recurrence. Being startled when a phone rings is automatic; reaching out to pick it up and place it to the ear requires an appreciation that the noise indicated that someone want to talk, and that the object is more than an object.
The first key point about awareness in clinical terms are that it is manifest by
a behaviour that depends upon the person extracting information from some stimulus; and/or
a behaviour that carries meaning of has a goal over and above the direct effect it has.
The second key point is that this is a judgement made by the observer; there is no other test.
It is a characteristic of all living things that their state fluctuates. This is very true of all people, and no-one is completely consistent in how they feel, act, or perform over time. Moreover, there are cycles associated with day and night, eating, menstruation, and so on that particularly cause fluctuation.
Fluctuations in responsiveness and awareness are to be expected in all living things, and are present in people with a prolonged disorder of consciousness.
The consequence is that people may be more responsive at some times than at other times; and more aware at some times that at other times.
(d) Spontaneous movements
Spontaneous movement are also a characteristic of all animal life, and continue until death. They are obvious in terms of breathing and heart-beat, but they affect all movements to a greater or lesser extent. The reason for this is, to the best of my knowledge unknown. It is just a characteristic. Humankind, as a species, is remarkably restless, which is one explanation of its spread over the whole world.
Assessing a patient
The observations above have implications for the assessment of an individual:
a patient is never ‘in a state’ that will persist unchanged. A patient’s state will fluctuate over short and long-term periods around a mean.
both awareness and responsiveness form a spectrum. Someone faced with a sudden threat may well be hyper-aware of many things not normally noticed; and later will be asleep and totally unaware. More commonly, attention can wander, people drift into day-dreaming, and so on.
separation of the ‘vegetative state’ from ‘the minimally conscious state’ s not possible, on the basis of any well-founded, valid criteria.
judging awareness and the level of awareness is ultimately exactly that – a judgement that can be informed and justified on the basis of experience and observed behaviours, but cannot be validated against any external ‘true measure’.
it is natural human behaviour to attribute meaning to close association and to behaviours. It is common to hear people attribute implausible meaning to the behaviour of pets, and people attribute improbable cause/effect relationships to all sorts of coincidences. (Witness the alleged cause of blood clots by Covid vaccines.)
rare behaviours are difficult to interpret, but most are spontaneous and not evidence of awareness.
In the end, the lead clinician or, as in this case, the judge has to take into account the totality of the evidence and to avoid being swayed by any one piece of evidence.
In this case
In this case a relative took some videoclips of the patient during the course of a FaceTime interaction with a neurologist who did not review the hospital notes, or indeed collect any other information. Unsurprisingly the judge discounted the ‘evidence’. Both the clinical diagnosis of the current clinical state of a patient, and the estimation of prognosis require a full evaluation of all the evidence.
At an absolute minimum a clinical opinion of this importance must not be given without:
full review of all the medical evidence
interviews with clinicians and carers currently involved with the patient
interviews with as many family members and friends as is reasonable in the circumstances
a personal assessment of the patient, preferably face-to-face but, in cases where there are no doubts or disputes and the written and oral evidence is all consistent and beyond doubt, then a video-assessment is reasonable.
The neurologist instead drew strong conclusions from a short FaceTime call with the niece and the patient and about than three minutes of video. The matters discussed above illustrate why this is simply an unacceptable approach. Videos are not in themselves proof of anything; they are evidence to be used and interpreted.
Derick Wade is a Professor of Neurological Rehabilitation in Oxford with more than 30 years’ experience of assessing people with severe brain damage and with a prolonged disorder of consciousness. He has been a witness in the Court of Protection in many cases, has participated in the development of both editions of the National Clinical Guidelines on Prolonged Disorders of Consciousness, and has researched into and written about the assessment of awareness and best interests. He tweets @derickwaderehab and @rehabil11484543
Jenny Kitzinger’s blog on the role of video in court cases about profoundly brain-injured patients is a very interesting read which resonates with my own clinical experience caring for patients and chairing the Royal College of Physicians’ Working Party that produced the national guidance on Prolonged Disorders of Consciousness. Many of the issues she raises are pertinent to our daily clinical practice, even outside of the legal context.
Videoing patients in disorders of consciousness can be a very valuable addition to the tool kit for assessing consciousness, but it has to be approached with great care and attention by families, healthcare staff and legal professionals, and it must be placed in context.
One advantage of videoing patients is that this can allow family members to capture a moment of responsiveness which might not have been witnessed by the clinical team. A camera phone might show a patient responding to a family event – like being presented with a new nephew – and it may only be those close to the patient, people with emotional salience, who generate such a reaction. It may also be a relative who has been at the bedside hour after hour, day after day, who is able to detect that the patient was able to respond to a question in a brief island of alertness. Sometimes family videos can inform diagnosis, as they offer clear evidence of possible awareness. I’ve had experience of that clinically: for example, in one patient who later emerged into consciousness, the first clear evidence I saw of his ability to engage in interaction was a video taken by his son of him responding to the voice of his sister on the phone from New Zealand.
At other times, however, families believe they have video showing that a patient is aware, and this is simply not what the video shows. The misinterpretation of such video material is understandable. It is, as Jenny Kitzinger points out, not surprising that families (and the general public) may interpret eye opening or spontaneous/reflexive movements as evidence of consciousness, given the dominant media images of what a “coma patient” looks like. And the behaviours of patients in a vegetative state can be very challenging to interpret. This is still true for me even after 35 years of working in this field. I sometimes look at a patient and wonder: “Is she looking at me? Is he following me with his eyes?” It can be extraordinarily tantalising.
Assessing consciousness is even more difficult when you are looking at a video rather than being at the bedside: it is almost impossible to work out, for example, if a patient is tracking with their eyes if you are not in the room with them. Other behaviours can be even more confusing. I remember one patient, who proved to be in a permanent vegetative state, who would chuckle away as if at their own personal joke: if they had had headphones on, you would think they were listening to a particularly funny show. But the giggling was completely unrelated to external stimuli. It was also disturbing, as the behaviour carried on day and night without any respite. We have had many other patients in vegetative states who just weep – and this, of course, is particularly distressing. Although crying can occur in vegetative states, as a clinician one has to be alert to the possibility that it heralds increasing awareness and the patient is indeed experiencing emotional distress at some level.
Hand movements are another common feature of disordered consciousness that can be confusing. When a patient appears to squeeze someone’s hand, this can be interpreted by family members (and even by some non-specialist staff) as evidence of consciousness. But this is not necessarily so. Patients with severe brain injury often demonstrate ‘primitive’ reflexes and one of the most common is a grasp reflex (automatically closing their fingers around anything placed in their hand). But this may look (and feel) even more noticeable if for example, rather than an object, they are holding someone else’s hand. When the other person squeezes or strokes the patient’s hand, the reflex will be stimulated repeatedly and it can feel like a response. Indeed, it can be experienced as an intimate moment of connection.
During the public health pandemic, when video links are often the main (or only) link families have to a patient, it can be hard for families to understand their loved one’s condition. Several families we have worked with via video conferencing platforms have been left with very confusing messages. For example, we have seen nurses and healthcare assistants facilitating the video conference and trying to offer the family comfort by telling them that the patient is responding to them. Not uncommonly they report that the patient is ‘blinking’ or ‘squeezing their hand’ to indicate that they are moved by being able to see and hear their families. This can prove to be misleading when the patient is later systematically tested and reviewed over many months and the movements are found to be spontaneous or reflexive. Disappointment after their earlier optimism can often serve to deepen the family’s distress and, in some cases, they have been unable to shake the belief that the patient has deteriorated in the hospital’s care and that the staff must therefore be hiding something from them.
The pandemic has had very many devastating effects, one of which is that it has denied families the experience of being able to spend time at the patient’s bedside. From the clinical perspective this has had several adverse consequences.
Firstly, patients are bound to respond most readily to familiar people and so family members form a critical component of the assessment process. Not having them present could lead to misdiagnosis.
Secondly, catastrophic brain injury does not just affect the patient: a key part of our role is to work with the family and support them to understand both what has happened and what to expect for the future.
At the outset it is often unclear exactly how much recovery there will be. Spending time in person with the clinical team on an almost daily basis helps to build trust and shared understanding between the family and professionals as we work together to examine behaviours and possible responses. Over time, the patient’s trajectory of change (or its absence) becomes clear – but this is a journey that the clinicians and families must take together and in person.
So, useful though a video can be, it should always be seen in context, and understood for what it is: a limited snap-shot. Understanding such clips needs to be put in the context of a patient’s overall state and assessed over time by clinicians with the appropriate skills and experience in this most complex area of healthcare.
Lynne Turner-Stokes is the Northwick Park Professor of Rehabilitation Medicine at King’s College London and Director of the Regional Hyperacute Rehabilitation Unit at Northwick Park Hospital in Harrow.
Family videos of severely brain injured patients play a crucial role in the public domain. They feature in court proceedings, fund-raising drives, social media and the national and international press. They are used to contest patient diagnoses and to fuel disputes about life-sustaining treatment.
During the pandemic, videos have been hugely important for families. Many have been unable to see patients face-to-face. Families have often had little or no opportunity to be at the bedside. This means they have limited experience of what relative is like given their clinical condition and are unable to sit with clinical teams in person to reflect on and come to terms with their loved one’s diagnosis and prognosis.
In this blog I discuss how video featured in a recent Court of Protection hearing, and in the public controversy that followed. I place this in the context of previous controversies, and ask what the courts can do, in future, to respond to the deployment of video-recordings in cases of treatment dispute.
The case of RS
A middle-aged Polish man, known to the English-speaking world as “RS”, was the subject of several contested Court of Protection hearings during December 2020 and January 2021 before Mr Justice Cohen, and before judges in the Court of Appeal (although permission to appeal was refused) . There were also at least two failed attempts to put the case before the European Court of Human Rights. The key issue was whether continuation of his life-sustaining treatments – specifically, clinically assisted nutrition and hydration – was in RS’s best interests.
The applicant Trust (University Hospitals Plymouth NHS Trust, represented by Vikram Sachveda QC) believed – in common with the treating team and RS’s wife (and children) – that continuing life-sustaining treatment was not in RS’s best interests. His niece, speaking also for his mother and sisters and other members of the ‘birth family’, believed that it was in his best interests to continue treatments, and that this is what he would have wanted. The ‘birth family’ was represented by a changing cast of lawyers including Bridget Dolan QC, David Lock QC, Charles Foster, James Bogle and Bruno Quintavalle. Lawyers acting for RS by his litigation friend the Official Solicitor included Andrew Hockton and Katie Gollop – and the Official Solicitor herself (Sarah Castle) was in court for one of the hearings. The Official Solicitor’s view – like that of the Trust and RS’s wife – was that continuing life-sustaining treatment was not in RS’s best interests.
RS eventually died on 26th January 2021 after his clinically assisted nutrition and hydration had been withdrawn and reinstated on several occasions while yet another court application concerning him was in preparation.
The dispute about RS’s treatment spread well beyond his treating team and his family. It spilled out from the bedside to the courts and into the public domain and then back again through the legal system (including the Court of Protection, the Court of Appeal, and the European Court of Human Rights). There were many powerful forces at play, and a huge clash of religious and cultural values. The persuasive power of video was a crucial lightning rod in how the story played out.
“Is this what a patient in a coma looks like?” The RS video
RS had been living in England, with his wife and children, since emigrating from Poland in 2006. On 6th November 2020, he had a cardiac arrest and was without oxygen to his brain for at least 45 minutes. Inevitably, he had significant brain damage as a result. The treating team, and an independent specialist appointed by the Official Solicitor (Dr Dominic Bell, Consultant in Intensive Care Medicine) diagnosed him as being first in a coma and then in a vegetative state and, in consultation with his wife, decided that continuing treatment was not in his best interests.
The patient’s birth family – his mother, sisters and niece – disagreed. They believed that (irrespective of his diagnosis) RS would never have wanted the feeding tube withdrawn due to his strong Catholic faith. (For discussion about the potential role of his religious faith see this report from the Anscombe Bioethics Centre.)
Although they initially accepted the diagnosis (at the first Court of Protection hearing), the birth family subsequently also claimed that he was not ‘vegetative’ but in a ‘minimally conscious’ state and that his prognosis was therefore much better than his doctors were predicting. Their changed position about RS’s diagnosis was – in their view – supported by video clips of RS.
During a brief visit to the bedside (ostensibly to ‘say goodbye’), RS’s niece made videos of RS in his hospital bed which purported to show him responding to her. Video clips were shown to other neurological experts and presented to the court. One also found its way onto social media and then into Polish mainstream media outlets, where it attracted a great deal of comment. The video was made and distributed without the consent of RS’s wife or the Official Solicitor representing him and is in breach of the Court of Protection’s reporting restrictions. For that reason I do not link to it here.
Figure 1: Transcript of the dialogue recorded on the video of RS
In the video clip circulating on social media, the patient’s eyes are open, they move and blink. The handheld camera (presumably on a phone) is slightly adjusted to look directly into the patient’s face. He sniffs, blows out through his mouth and makes facial expressions. One interpretation is that he is about to cry: that is certainly how it looks to me, and his eyes seem to be watering. A colleague, however, who saw the video without being able to understand the Polish says this is not what she saw (and it may not be the self-evident ‘reading’ to all viewers).
For anyone with experience of working with patients in ‘disorders of consciousness’ (the generic term covering coma, the vegetative state, and the minimally conscious state), this is very clearly not a patient in a ‘coma’ – because his eyes are open.
However, there is no evidence at all to suggest that he is in a minimally conscious state as opposed to vegetative. Everything about his behaviour in that 18 second clip is compatible with a vegetative diagnosis – including, in particular, his eyes being open, breathing on his own without artificial ventilation, watering eyes, eye movement, and facial grimacing.
By contrast, for the majority of members of the public who commented on the video, the clip provided evidence that RS was not vegetative (though this was often equated with not being in a coma or, indeed not being brain dead). They drew on the very behaviours characteristic of the vegetative state as evidence that he was not vegetative (e.g. breathing on his own) – and they read into the video behaviours that (for professionals with experience in this area) absolutely cannot be evidenced by it (e.g. claiming that it showed RS reacting to relatives).
The text beneath the video when it was posted on YouTube asserted that UK doctors had misdiagnosed RS and it called on viewers to campaign for Polish government intervention and the return of the patient for ongoing treatment in Poland.
“Doctors, after three days, wanted to kill him while he was still in a coma. They said he would never wake up. However, he woke up, breathes on his own, reacts to his relatives. The hospital plans to kill him by starvation and dehydration, and the family fights desperately to save him.”
The YouTube video had over 100,000 views within 48 hours before being taken down after the Official Solicitor contacted the legal office of YouTube, provided them with a copy of the transparency order and requested removal of the video. Even after that, however, the video continued to circulate widely in a tweet on Twitter where it garnered another 160,000+ active views (people clicking on it) and was seen by many more as it was embedded to be played on a loop without any need to click on it. The video was picked up by several Polish press reports and played on Polish television. Tweets about the video tagged high profile political, media and religious figures, including the Polish Embassy, the British Embassy in Warsaw, the British Prime Minister, the Queen of England, and the British Foreign Secretary, Dominic Raab. Other tweets targeted the NHS and the hospital in which RS was being treated.
What is clear from the comments is that viewers were horrified at the threat of ‘starvation’ and the majority saw the video as compelling evidence of RS’s consciousness and as proof that his doctors had misdiagnosed him (see Figure 2).
Figure 2 Tweets about RS
Note: Some details in the following tweets are blanked out, such as where a patient’s name is given and I have excluded the image of the video that was often attached.
To many viewers, it seemed self-evident that RS was not unconscious – as claimed by the doctors who had diagnosed him. If a person is correctly diagnosed as vegetative, they are – by definition – unconscious and have no awareness of themselves or their environment: they do not respond to stimuli.
But those circulating the video declared that a viewer can ‘see for yourself’ that the patient is aware and responding, pointing out how his eyes blinked or moved. An email appeal reached me asking that I help save RS’s life: “As you can see from the dramatic video [he] is responsive! Here is the dramatic video”.
Claims were made that this man could clearly experience emotions and even understand his situation. Assertions included that he was crying because of the pain (or anticipated pain) of having food and water withdrawn. It was all obvious to the naked eye. “He is not unconscious, he pleads and pleads with his face” wrote one; “His face of pain and tears is clearly visible” wrote another. (These last two tweets were written in Polish – the main language used in this online debate. I relied on Google Translate and the help of a Polish colleague to translate them.)
Patient Videos in the Public Domain
The use of patient videos, initially circulated on social media and then becoming news events and fuelling coverage in their own right, has become a familiar weapon in the public battle for hearts and minds in treatment dispute cases.
Videos were used in the battle over the diagnosis and treatment of vegetative patients such as Terri Schiavo (in the USA in 2005) and Vincent Lambert (in France in 2015) – where family members were at loggerheads about the right way forward. They have also featured in a series of cases in which there have been disputes between clinicians and parents around the treatment of children such as Alfie Evans (in England in 2018) (see Fig 3). It is becoming increasingly important to understand how and why such videos circulate and how they might be deployed in the course of end-of-life decision-making.
Figure 3 – Media coverage showing the power of the videos
So how do such videos come to be made, why are they so powerful? And what was the context in this case?
The creation and use of videos of RS in court
At a Court of Protection hearing on 15th December 2020, Mr Justice Cohen granted a declaration that it was not in RS’s best interests to continue to be given life-sustaining treatments, including clinically assisted nutrition and hydration (CANH) and that such treatment could be lawfully discontinued (a position supported by RS’s wife and pre-adult children). Treatment was withdrawn on 16th December 2020, but reinstated on 18th December when RS’s birth family filed an application for permission to appeal that decision. Permission to appeal was refused on 24th December 2020 and treatment was again withdrawn. The following day, members of RS’s birth family visited him in hospital and made the videos – which in turn prompted another court hearing on 31st December 2020.
The videos were created after the birth family asked an experienced neurologist, Professor Pullicino, apparently located via Christian Concern, to give his opinion about RS. They did so without seeking permission from RS’s wife, from the hospital, or from the court. Professor Pullicino instructed RS’s niece, during a FaceTime consultation as to what to do in order to try to elicit a response from him and how to make the video clips. It is unclear how long the niece’s visit to RS lasted or the duration of the video recording that was made, but the clips submitted to court in a hearing before Mr Justice Cohen on 31st December 2020 totalled about 3 minutes. The longest is 41 seconds.
During the hearing, Professor Pullicino testified that the clips provided evidence that RS either was or might be (his evidence was confused) in a minimally conscious state, and that, either way, this meant a much better prospect for his recovery than had been suggested by the treating clinicians or independent expert. He claimed that the video clips suggested an emotional response from RS to the presence of family members, and that he moved his eyes in their direction when they called his name.
The significance of the diagnosis – as either vegetative or minimally conscious – is that an MCS diagnosis would have changed RS’s prognosis to include the possibility of recovery to a level he might have wanted (according to evidence of his wishes provided by his wife). His birth family were keen for him to be moved to Poland and treated there, and the Polish Ministry of Foreign Affairs and the Polish Ministry of Justice offered to provide transport and treatment to enable this.
The video clips were not shown in court at any of the hearings, but by the time of the 31st December hearing they had been examined by the treating clinician and the independent expert neurologist, appointed by the Official Solicitor. These doctors, in contrast to Professor Pullicino, had previously reported that RS was in a coma and showing signs of becoming vegetative (at the time of the first hearing) and then that he had moved in to a vegetative state (by the time of the second hearing). They had never seen any evidence that RS was in a minimally conscious state. Nothing in the video clips changed the views of the treating clinicians or the independent expert that RS had been in a coma and was now in a vegetative state. Subsequent re-examination of the patient by the expert neurologist appointed by the Official Solicitor again found him to be in a vegetative state.
The judge at the 31st December 2020 hearing (revisiting questions raised from the 15th December 2020 hearing) concluded that “there has been no improvement in RS and no basis at all to change my decision that it is not in his best interests for life-sustaining treatment to be given“. He went on to reject the request for RS to be moved to Poland because, among other things, “there is no suggestion that any treatment or care can be provided overseas that could or would not be provided in UK if it were in his best interests“. Moreover, “it is unthinkable that he should be moved against the wishes of his wife and children“.
Diagnosis at the margins of conscious and unconscious states
To understand the problem with Professor Pullicino’s interpretation of the videos (and with public interpretation of the video circulating on social media), it’s necessary to understand how diagnosis is established according to best practice and clinical guidelines. The key guidelines for patients with disorder of consciousness in England and Wales have been drawn up by the Royal College of Physicians [RCP] and it is here one can find definitions of, and clarifications of the distinctions between, coma, vegetative and minimally conscious states.
The word ‘coma’ is often used in a very loose way in everyday discussions and sometimes interchangeably with ‘vegetative’ but it has its own distinctive clinical definition. The RCP guidelines state that a coma is: “A state of unrousable unresponsiveness, lasting more than 6 hours in which a person: is unconscious and cannot be awakened, fails to respond normally to pointful stimuli, light or sound, lacks a normal sleep–wake cycle and does not initiate voluntary actions” (RCP, 2020, p25). Comas rarely last more than a few days or weeks after which a severely brain injured patient who does not die will often move into a vegetative or minimally conscious state. Distinguishing between these two latter states requires expert diagnostic skills.
A defining feature distinguishing the vegetative state [VS] from the initial coma is that patients move into having sleep-wake cycles. They not only open their eyes when ‘awake’, but their eyes roam about, and they may turn their heads, make facial expressions, and even cry or laugh. Vegetative patients can also have a grasp reflex (they will squeeze a hand holding theirs), a startle reflex to noise, and they can turn away from painful stimuli. All these features are compatible with the clinical diagnosis of the vegetative state (RCP, 2020)
The minimally conscious state [MCS] can, at first glance, look rather like the vegetative state but the patient with some minimal consciousness may persistently focus on and follow a family member with their eyes, may cry or laugh appropriately (rather than at random) or ‘localise’ and do “purposive motor behaviour” (e.g. rather than reflex retraction from pain, the patient may act to push away the source of pain) (RCP, 2020).
Given how the difference between VS and MCS is defined it is obvious that one-off observations of something as subtle as eye movement or facial expression without capturing the context or engaging in rigorous repeat testing could result in a confusion of the two states (with error in either direction, i.e. VS patients might be taken to be MCS or vice versa).
That is why clinical guidance from the Royal College of Physicians makes clear that interpretation of apparent ‘responses’ (or the lack of such responses) must be approached with great care. Patients’ behaviours need to be understood in the context of other clinical knowledge of that individual and “When assessing responsivenessseveral complementary sources of behavioural observations should be used”, including, for example, routine observations recorded within notes, made by staff (RCP guidelines, 2020, Annex 2). At the same time, it is vital that efforts at refining diagnosis should incorporate observations (and recordings) by family and close friends, because they “areoften present over prolonged periods and because many patients respond at an earlier stage with familiar people.” [my emphasis] (Annex 2). The interpretations of family and friends should not, however, be necessarily taken at face value, but explored in dialogue with the clinical experts’ interpretations and structured testing processes.
The weaknesses of Professor Pullicino’s interpretation of the videos include his reliance upon what the patient’s niece conveyed about her interpretation, such as how she felt that RS’s behaviour ‘changed’ when she entered the room (a slightly odd statement given it is unclear how she could assess what his behaviour had been before she entered). In addition, Pullicino offered a (re)diagnosis without having read any medical reports about RS, without having spoken to any member of the treating team, and without having seen the MRI or EEG scans. He was not privy to information about whether RS’s eyes had a tendency to roam to the right or the left, and had insufficient evidence or time to make a meaningful assessment of whether or not his eye movements in relation to his niece might be significant. He had not reviewed the patient’s notes or engaged with the observations of staff involved in examining or caring for him.
He also did not have the benefit of engaging with RS’s wife and her experience at the bedside, despite her being the person most familiar to RS before injury. She had been his “constant companion” at the hospital and provided the value of having been “present over prolonged periods” (as per the RCP guidelines). It was unclear whether Professor Pullicino was even aware of the estranged nature of the relationship between the niece and RS. He even incorrectly referred to the niece as RS’s daughter at one point and had to be corrected in court. As the judge recorded in the judgment:
“I remind myself that RS had not seen his niece or her family for nearly a decade. I am not sure whether Dr Pullicino was aware of that fact. To found his opinion as he did on the basis of what he believes to be an emotional response to someone who may have been almost a stranger seems a huge leap of faith.” (para. 29)
This is the context within which the video released to the public needs to be understood. I cannot be sure whether or not the 18-second video was one of the ten short clips that constituted key evidence discussed in court on 31st December 2020. However, this video is completely unconvincing from a clinical perspective – there is nothing in it to suggest the patient has any consciousness and, if it were part of the evidence presented, it would not have had any purchase for all the reasons discussed above. However, the very weakest of evidence in court can be the most compelling in the public domain.
Undermining trust in diagnosis
The fact that the video of RS released via social media gained such attention – and seemed so shocking to viewers – is in part because people think they know what a coma or vegetative state looks like. After all, we have all seen the static body in the bed, immobile face and closed eyes which circulate widely on TV and in film (Wijdicks and Wijdick, 2006; Kitzinger 2014). On the rare occasion that eyes are shown open, they are fixed and unmoving. Indeed, in one otherwise well-researched portrayal in the TV series “Casualty” (see Fig 4), the unblinking and unmoving response to having a hand waved in front of her was a way in which we were introduced to a vegetative patient and the scene was set for understanding that she was entirely unconscious.
Figure 4 – A still from the TV series “Casualty”
It is not surprising that anyone viewing the video clip of RS, or indeed actually visiting a vegetative patient in person, may feel that the patient fails to conform to expectations and therefore must have some level of consciousness. There is a vast gulf between typical cultural representations of the vegetative state, and its clinical definition.
Over and above the issue of media/cultural stereotypes is the question of visceral human experience. Emotional investment and common-sense everyday experience prime us to interpret facial expressions, eye gaze and physical movement as meaningful. The declaration of the woman speaking in the RS video suggests she is absolutely genuine in her feeling that the patient is experiencing emotions despite clearly having been offered alternative clinical explanations: “What will they tell me? That this is a reflex? Is this really a reflex if he’s crying?”
One man, for example, commented that even after several years he is not sure whether his brother is vegetative or minimally conscious. He says: “when you’re looking at somebody and they’re looking straight at you, in your eyes, and they start crying you don’t not take any notice of this. I don’t care what anybody says really” (see Figure 5).
You can see many other examples of how families of severely brain injured patients may struggle to make sense of what they see here in a healthtalk.org resource we developed to support families.
Video as a tool to give ‘a face’ to the patient and assert humanity
The power of such videos goes well beyond challenges to diagnosis. Videos of patients can also be mobilised as part of a broader challenge to the way in which patient care is approached (e.g. in a particular healthcare or legal system). It is not surprising to find that some of the same organisations and individuals (especially from Catholic organisations) have been involved in many of these cases – this is certainly true in the Schiavo case in the USA, the Vincent Lambert case in France, and in both the Charlie Evans and RS case in the UK. This is an international issue.
In an interview on “Pro-Life” weekly about the Vincent Lambert case, both Bobby Schindler (Terri Schiavo’s brother) and Tom Shakely from the Terri Schiavo Life & Hope Network (based in the US), highlight the importance of videos. They assert their view that clinically assisted nutrition and hydration is not ‘life-support’ but rather is basic care, and that these patients are not ‘end-of-life’. Video images, they point out, are powerful because they put a human face to the patient, and disrupt the idea that he or she is dying, or should have ‘care’ withdrawn.
“The phrase ‘sunlight is the best disinfectant’ is common in law…when you see the humanity of someone like Alfie Evans or Vincent Lambert …it’s incredibly difficult to look him in the eye and to say this is a man who is dying or this is a man who doesn’t deserve basic care”.
Bringing these images ‘into the light’ challenges the false media imaginings of the patients at the centre of these disputes as frail husks hooked up to multiple machines. It challenges fallacious fantasies of simply ‘pulling the plug’.
From the point of view of those promoting life-sustaining interventions, videos of the patient in their brain-injured state re-centre the individual’s humanity. In many ways, the explicit claims associated with patient videos (that the clips provide evidence that the patients are at least partially conscious) is irrelevant from this perspective. The claim is that all life matters and that no patient should have CANH withdrawn as long as it is effective in sustaining their existence.
The videos in this sense have significance far beyond the individual case and their use allows these patients to become icons, personifications of struggle beyond any one individual; the faces of Terri Schiavo and Vincent Lambert for example, and now of RS, are used to illustrate (among other things) the dangers of ‘state-controlled medicine’, the failings of a ‘barbaric state’, and the unethical nature of medio-legal frameworks developed outside the tenets of specific religious faiths. It may even be that involvement with such cases is pursued (by organisations such as Christian Concern) less with the expectation that the individual patient can be saved, but rather 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.
As far as videoing patients is concerned, the genie is definitely out of the bottle. Families will continue to video patients and circulate clips on social media, whatever doctors and courts tell them and such videos will continue to engender controversy. This is made possible by the ubiquity of the phone-camera, the proliferation of social media, and promoted by the rising distrust of expertise and access to international lobby networks.
Family members take videos of patients for a wide variety of reasons with or without the knowledge of the patient’s clinical team (or even other relatives). They may film the patient to assist with, or to challenge, clinical diagnosis; to share what they witness with distant family; or in order to provide ‘evidence’ to another clinician from whom they seek advice. Those not able to attend in person can simply record calls with the patient on video-platforms. Such recordings may be entirely an individual initiative or they may be encouraged to make clips by organisations keen to help them to access alternative clinical expertise or to draw public attention to what they see as a violation of patient’s rights – with the deliberate endgame of using it for campaigning purposes.
In general, it is neither feasible nor advisable to attempt to stop families taking videos of patients. There may be occasions when chaperoning a one-off visit from a particular relative might be possible where other close family believe this might be necessary to avoid inappropriate filming (i.e. not in the best interests of the patient). An alternative approach is to proactively work with family members to film the patient and discuss videos with them (as is often done in neuro-rehabilitation settings) and to ensure that, during any zoom calls, an experienced staff member is there to help family interpret what they see.
It is extremely hard to police what is done with such film once it has been made and is stored on a relative’s mobile phone. It can be easily and anonymously uploaded to social media and the fact that the general public may find such videos shocking and compelling ‘evidence’ can ensure rapid and extensive circulation. When a case is of interest in a different jurisdiction, the threat of contempt of court may also have little impact on mass media circulation (unless the media outlet has UK outlets/staff). It might be possible, however, for judges – alert in advance to the possibility of the public release of videos – to address this issue during a hearing. They might, for example, ask family members in court whether they have shared such clips, and remind them of (or negotiate with them) the terms of the transparency order. It is also important that legal teams act swiftly to have videos taken down where they breach the transparency order: it may be useful for lawyers working on such cases to develop an information resource that can be quickly accessed by lawyers acting to protect the privacy of their clients, which will provide a guide to contacting the relevant offices of the main social media platforms such as YouTube, Twitter and Facebook and their policies on the removal of items which breach their privacy and any existing court orders.
More fundamentally, of course, nothing will change without a broader public understanding of disorders of consciousness, better media representation of these conditions and a wider engagement with the clinical, ethical and social challenges. Even then, fundamental clashes in underlying values and beliefs will continue to ensure that some disputes will always become major public battles, whatever effort clinicians, families and courts make to try to come to collaborative best interests decisions.
 When the video of RS was released on YouTube it quickly ‘went viral’ – even though both the YouTube channel on which it was located, and the Twitter-embedded format were started on the very day of release with no established channels or followers (presumably a device to avoid identification given the dubious provenance and unlawful use of the material). However, there were well-established social media networks from particular value bases, such as Catholic networks, who picked up on the video. (One re-tweeter has twitter handles such as #BabiesLivesMatters and images of the Virgin Mary and other tweets on their timeline suggest strong traditional Catholic values). The video also generated interest from a wider constituency due to the ‘shocking’ nature of the moving images and the story behind it.
 Of course, those who believe life-sustaining interventions should stop may take a very different view about what it means to ‘see the humanity’ of an individual. Vincent Lambert’s sister, for example, has spoken out about the dehumanising appropriation of images of him after his injury, circulated without his consent; and she has spoken about how much he would have hated this and wanted to be remembered and connected to his ‘humanity’ via his own beliefs and autonomy. ‘La soeur de Vincent Lambert reagit au novel arret des soin”, L’union’. L’union, 3/7/2019) Interestingly also while RS’s birth family evidently saw the videos as a powerful endorsement of their view treatment should continue this was not the only reaction from people who encountered the images on twitter. One person, for example, commented how distressing it was to repeatedly encounter the video of RS looping on her timeline, and commented that, to her, it showed a man who was suffering pain and indignity, and should be allowed to slip away and be at peace.
When I found out that there was a chance to observe Court of Protection hearings as part of the Open Justice Court of Protection Project, I jumped at the opportunity. My initial feelings were of excitement at the chance to be a fly on the wall in proceedings of such significance.
I will admit that, before enrolling on the Consent to Treatment module as part of my LLM degree at Cardiff University, I knew little of the Court of Protection and its function. I had sat in on criminal, civil and family proceedings, but the Court of Protection was new territory for me and I wasn’t sure what to expect.
Very quickly, my sense of excitement subsided as I found out the facts of the case. What I would be observing was, in its starkest terms, a decision between life or death.
The court had to decide whether treatment in the form of clinically assisted nutrition and hydration (“CANH”) and ventilation should be continued for a young woman, pseudonymised as “Lilia” in the judgment. Only 20 years old, Lilia was in a vegetative state following a suicide attempt. She had suffered catastrophic hypoxic brain injury.
The applicant NHS Trust (represented by Mungo Wenban-Smith) was seeking a declaration that it was lawful and in the best interests of Lilia for CANH and ventilation to be discontinued and for palliative care to be provided instead. This application was supported by Lilia’s mother (and sister) (represented by Alev Giz ), by Lilia’s litigation friend (the Official Solicitor, represented by Nageena Khalique) and their position reflected the consensus of three clinicians (including the treating doctor and two independent experts).
Withdrawal of life-sustaining treatment was opposed by Lilia’s father (represented by Ulele Burnham) who believed that Lilia’s values were such that she would wish to preserve her life – even in these circumstances, where the likelihood was that she would remain in the vegetative state for the rest of her life (which could be decades).
Since there was dispute about Lilia’s best interests, it was down to Mr Justice Williams to determine what was in Lilia’s best interests. Based on the evidence before him, he sought to ascertain her values and approach to life to conclude what she would want in this situation.
The remote platform
I accessed the hearing with relative ease via Microsoft Teams – and the first thing that struck me was the number of people attending the proceedings. There were 32 people present, myself included. Prior to the hearing I had considered the impact of Covid-19 on court proceedings and whether the use of an online platform, as opposed to being in a physical courtroom, would depersonalise proceedings. However, in some ways the online experience had the opposite effect. On my screen was a collage of faces, each with their own interest in the case, many being family and friends who were centrally involved in Lilia’s life. I could immediately tell that one attendee had a personal involvement in the case, as their eyes teared up and were quickly wiped away.
When I’ve observed in a physical courtroom I’ve been seated at the back with a view for the most part of the backs of people’s heads and I’ve often been uncertain about everyone’s identity and role in the case. Here, there was no doubt as to who was who – their names appeared against their faces on the screen. Everyone was looking straight at me. I suddenly felt right in the middle of proceedings, and worried that I was intruding on the very personal matter of another family’s tragedy. It suddenly felt odd and uncomfortable to be witnessing this decision concerning the most significant right of all, the right to life, while sitting on my bed in my student house. These feelings subsided as the hearing got underway and my attention turned to trying to understand the medical complexities of the case.
Hearing the medical evidence: Smiling and music lose all meaning
Two expert witnesses were called to give evidence: first, Dr Hanrahan, an expert consultant in Neuro-rehabilitation, who was approached to provide a second opinion, and second the treating clinician (whose name we are not allowed to make public under the terms of the transparency order).
Initially I felt overwhelmed by the technical medical terminology and what it meant. However, as Dr Hanrahan settled into giving his evidence it was clear this was something he had done many times before. He was careful and selective in his choice of words and methods of explanation, making it understandable for the lay person. His professional opinion was Lilia would most likely remain in her current vegetative state, with no awareness and no arousal to stimuli. Her behaviours are automatic and primal responses, such as sweating and a high heart rate. She is not feeling the emotion of pain but rather just showing reflexes to it.
I found it quite hard to listen to what Dr Hanrahan said about her facial movements. He said that facial movements often occur in a person in a vegetative state without this being intentional, or a reflection of anything they are feeling. If Lilia smiles that is not necessarily indicative of an emotional reaction. Seeing a smile on the face of somebody you love when they are unconscious would automatically give me hope that this was a sign of communication or increased consciousness. Yet, I learnt from Dr Hanrahan the harsh reality that this is not the case. A ‘smile’ can be simply an automatic muscle reaction. With this understanding, a smile seems to lose all meaning.
Dr Hanrahan went on to expand upon the severity of Lilia’s situation through a distinction between the concept of ‘listening’ and ‘hearing’. He said if we consider the ear as the hearing organ and the brain as the listening organ, in Lilia’s situation there is virtually no connection between the two. So, while she may be able to hear, she cannot truly listen. This was significant, as it had been established that one of the things Lilia valued in life, and which gave her great pleasure, was listening to Japanese music. The consultant’s explanation indicated that she could no longer receive any pleasure from this activity.
I wondered, is it truly a life worth living if you are no longer able to access pleasure or happiness? Dr Hanrahan made it clear that in the very unlikely circumstances that there was any minimal improvement, the only increased awareness she would likely have would be of the pain and discomfort she was in.
Second, Lilia’s treating clinician gave evidence that was in essence the same as that of Dr Hanrahan – while also noting that Lilia’s condition had in fact worsened recently, and there was now sign of infection. She expressed the clear and unequivocal position that it was the clinical consensus of the team at the hospital that the continuation of treatment could not be justified as being in Lilia’s best interests.
Counsel for Lilia via the Official Solicitor asked what the process would be if the court were to determine it was in Lilia’s best interest to continue to receive ongoing treatment. The treating clinician answered that in honesty she did not know; this was not a position that the hospital had ever found themselves in before. Of course, the court cannot force clinicians to provide treatment which they consider to be unethical. This was a dilemma which I had not previously pondered and it made me realise that the outcome of this case also had the potential to put doctors in a rather difficult situation, going against their own ethical and moral beliefs. My focus so far had been completely on Lilia, not on the doctors’ role.
Hearing from the family: Parental conflict
This was evidence I braced myself for. In stark contrast to the factual and objective medical language, it was time to find out about Lilia as a person and what she would have wanted for herself.
Her father spoke first. Knowing that he opposed the position of the other parties, in that he wanted CANH to continue, I was expecting an emotional plea to the judge about why he thought there was a prospect for improvement and why his daughter’s chance for recovery should not be dismissed. However, this was not quite the case.
I was struck by how composed and well-spoken he was, considering the situation. If I had been in his position, I am sure I would have been a blubbering mess. His position was that Lilia gave great value to the life of other living creatures and animals, regardless of their level of consciousness and that she would want the same values to be applied to her in this situation. He thought she would appreciate the chance to have the sensation of holding hands and sharing love and companionship with others again in the future, even though she may not have the cognitive function to recognise this. His view was that as we do not know what she is feeling or thinking inside, he wanted to give her the benefit of the doubt. This was difficult to hear, especially in light of the previous medical evidence which made it clear that this was highly unlikely to ever be the case. I cannot imagine the grief that he was feeling – his desire to continue with life-sustaining treatment was completely understandable, but I feel this was coming from him as a father who did not want to lose his child, rather than from the perspective of what Lilia herself would have wanted.
The central aim of Court of Protection proceedings is always to get a picture of the person’s values, wishes, feelings and beliefs – the choices they would make for themselves, and the way they lived their life. A picture emerged of Lilia as a young woman who enjoyed music, nature, Japanese culture and wanted to travel the world. The quality of her life now was incomparable with this. This was the sentiment expressed by her mother, who said that being in a vegetative state with the inability to communicate would be, for Lilia, “a fate worse than death” – and Lilia had actually said so to her best friend (who provided written evidence to this effect). I admired her mother’s ability to set aside her own personal feelings and emotions, as she acknowledged what the doctors had said: that any happiness or pleasure that Lilia may one day be able to feel would be overcome and saturated by pain and suffering.
My experience of the hearing
After hearing all the evidence, I had no doubt as to what Mr Justice Williams’ decision was going to be, but I still felt slightly taken aback when he said it, I had never before heard words of such importance – words which ultimately would be definitive in how somebody’s life was to end. He concluded that he was satisfied it was not in Lilia’s best interests to continue to receive medical treatment – only palliative care “with the anticipation that Lilia will then not live for more than three or four weeks”. He added, “that, I think, is what she would have wished for”. He ended the hearing by addressing the family with “profound condolences for the awful tragedy that has confronted you”.
This experience of observing a hearing in progress operated to humanise the law for me. When discussing the law as it is in the books, it is often easy to dissociate from the fact that when it is applied in practice there is always a real, living human being at the centre of proceedings. Someone who is unable to consent to treatment. Someone who has been through trauma. Someone whose life is essentially in the hands of others – namely a judge, who they have never met, or probably even heard of. This is a situation which nobody ever envisages for themselves.
I joined the hearing expecting to come out of it with an increased understanding and experience of the law in this area, which would complement my studies. And that certainly happened, However, to my surprise, I also gained an increased personal awareness of the importance discussing these often ‘taboo’ and topical subjects. After the hearing concluded, I sat and thought of all the various scenarios which could result in me ending up in a similar situation. It made me think about things in a new light and my head was full of questions. Recently I avoided collision with a car by the skin of my teeth, as it ploughed ahead at full speed while I was on a pelican crossing. What if the car had hit me and I had been seriously injured? Would my parents know what I would want to happen to me in such a situation? Did I even know what I would want to happen to me?
One thing I knew for sure is that I don’t want my parents to be in a situation like Lilia’s, where there was room for uncertainty and dispute. This was a case dominated by the unknown: it was unknown what Lilia felt in her current state; it was unknown whether there was a future prospect for improvement (although the chances of such improvement were deemed negligible); and there was no way of knowing with absolute certainty what she would have wanted in this situation since she had never addressed it directly and her parents held different view.s
There are many things in life we are unable to control: it is unknown what will happen to anyone in the future or when disaster will strike. But we can exercise some control. I like to think my parents would have a good grasp of my values and the things I attach importance to in life – however, as made clear by Mr Justice Williams in this case, fleeting comments on the matter (like Lilia’s comment to her friend, while they were watching The Mentalist, that she would not want to be kept alive in a coma) are not sufficient. They simply form one piece of the jigsaw that others then have to piece together to make a decision about you. If you want your own views about life-sustaining treatment to be definitive, you have to write them down in a formal way. So, the day after the hearing I began the process of making my own Advance Decision and advance statement of values (using the Compassion in Dying template, here).
Making decisions between life or death for another person is a huge thing to do. It can be done so much more easily if the wishes of the patient are clear. Obviously making an Advance Decision (and advance statement) is empowering; it gives me control and self-governance over my body. But I am making an Advance Decision for myself primarily for other reasons – for the benefit of those who would otherwise have to make decisions about me. Making such a significant decision on behalf of others, and being involved in court hearings, is a huge burden and one I would not want to inflict upon my family, especially when I can so easily relieve them of it.
Izzy Grove is a LLM student at Cardiff University. She tweets as @IzzyGrove99