A perspective from the ICU on best interests at the end of life

By Alex Warren, 31st March 2021

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. You may also be interested in Celia Kitzinger’s blog about the role of Dr Patrick Pullicino 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team and RS’s wife of seventeen years believed that it was in his best interests for life-sustaining treatment to be withdrawn.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 After a number of appeals and other hearings[1], treatment was withdrawn and RS died.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[2]. 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’. (See Celia Kitzinger’s blog about Dr Pullicino’s role in the case, here.)

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


[1] The published judgments are:

[2] See, for example, the case of Polly Kitzinger here

Photo by Arseny Togulev on Unsplash

Ambiguity and uncertainty in clinical reasoning

By Derick Wade, 30th March 2021

An earlier  blog post by Jenny Kitzinger concerns the case of “RS”, a patient in a prolonged disorder of consciousness, and Celia Kitzinger has commented on the role of Dr Pullicino, who gave expert evidence in the case, here.

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) [2020] 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 [2015] 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.

(a) Responsiveness

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.

(b) Awareness

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.

(c) Fluctuation

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 

Photo by Justin W on Unsplash

Use of videos in assessing consciousness: A clinical perspective

By Lynne Turner-Stokes, 30th March 2021

Editorial Note: See also the blog post about the role of the expert witness, Dr Patrick Pullicino, in this case, here.

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.

Photo by gbarkz on Unsplash

Seeing is Believing? Patient Videos in Life-Sustaining Treatment Disputes

By Jenny Kitzinger, 29th March 2021

Editorial Note: See also Celia Kitzinger’s blog post about the role of Dr Patrick Pullicino, the expert witness in this case.

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)[1] . 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[2]. 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 responsiveness several 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 “are often 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, 2006Kitzinger 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?”

The question she asks is raised by many of the families my colleagues and I have interviewed as part of our work at the Coma and Disorders of Consciousness Research Centre.

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).

Figure 5: Video clip from healthtalk “Family Experiences of Vegetative and Minimally Conscious States”


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.[3] 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.

Reflections

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.


Jenny Kitzinger is Professor of Communications Research at Cardiff School of Journalism, Media and Culture. She also co-directs (with Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre and runs a regular short online course on “Media, Culture and Coma”. She tweets @JennyKitzinger

Illustrations by Tim Sanders


[1] The published judgments are:


[2] 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.

[3] 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.



A life worth living? The importance of advance decisions

By Izzy Grove, 26th March 2021

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 case

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 case was before Mr Justice Williams and the judgment has since been published (London NHS Trust v CD & Ors (Withdrawal of Life Sustaining Treatment) [2021] EWCOP 727 (24 March 2021).

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

Photo by Ian Taylor on Unsplash

Parents in conflict over life-sustaining treatment for their daughter

By Abigail Brown and Ffion Power, 24th March 2021

Editorial note: The judgment has now been published: London NHS Trust v CD & Ors (Withdrawal of Life Sustaining Treatment) [2021] EWCOP 727 (24 March 2021)

The court hearing we observed (22nd March, COP 13712176) focused on “Lilia”, a young woman (20 years old) whose suicide attempt in January 2021 left her with catastrophic brain damage. She is in a vegetative state with a small chance that she might eventually become minimally conscious. Her father thought life-sustaining treatment should continue. Her mother (and other family members and her friends) disagreed. It also became clear that Lilia’s clinical team felt continued life-sustaining treatment (a ventilator and clinically assisted nutrition and hydration) would be unethical and the position of the Trust was that continuing treatment was not in Lilia’s best interests.

The hearing was before Mr Justice Williams.  The Trust was represented by Mungo Wenban-Smith. Lilia was represented by Nageena Khalique via her litigation friend the Official Solicitor (who reserved her view as to whether or not continued treatment was in Lilia’s best interests until after hearing all the evidence).  Both of her parents (who were separated from each other) had their own barrister: Ulele Burnham (for her father) and Alev Giz (for her mother). Both parents gave evidence in court. So did the treating clinicians and an independent expert.

We found the combination of medical information from the doctors and the evidence from Lilia’s parents heart-breaking and extremely thought-provoking – and it was fascinating to see the process of hearing evidence to inform a life-death decision.

The medical evidence

The hearing started with detailed evidence about Lilia’s clinical condition. A neuro-rehabilitation consultant, Dr Hanrahan, had provided an expert opinion about her diagnosis and prognosis. (There was also an expert report commissioned by the father from another expert, Dr Chris Danbury, which largely confirmed the other evidence, but he did not give evidence in person).  Dr Hanrahan was the first witness in court, and was very clear that Lilia’s brain injury was global and profound due to lack of oxygen to the brain resulting from self-strangulation. There was a consensus between his view and what other experts had determined (including her treating doctors and another doctor instructed by Lilia’s father).

We had both already learnt about the vegetative and minimally conscious state from the course we are doing at Cardiff University, but Dr Hanrahan’s evidence was very helpful to deepen our understanding. He is clearly very used to trying to help families get their head around the condition and it was particularly useful how he used metaphor to explain things. He talked about a computer which had been “wiped” of most of its software for example, and explained, how severe brain damage “reduces bandwidth” so there may be very little that a patient can take in. At another point he used the metaphor of the brain as a library with only a few books left in it. Obviously, these metaphors are just a way of communicating to non-specialists but we felt they helped us get a picture and it meant we were able to grasp and retain an understanding of Lilia’s brain injury.

Dr Hanrahan was also very good at making things concrete – explaining how, for example, simply being given a shower may overstimulate and exhaust a severely brain-injured patient to the extent that, even if they are minimally conscious, they may shut down completely afterwards. He explained that he is careful never to try assessing a patient’s level of consciousness on a day they have been showered. 

He thought it unlikely that Lilia would move into the minimally conscious state – but said he could not completely rule it out. He cautioned against seeing any such move as inherently positive. He explained that a “shift in diagnostic category” from the vegetative state [VS] to the minimally conscious state [MCS] should not be assumed to be an “improvement” from the point of the view of the patient. Moving from the vegetative to the MCS minus state does not, he said, necessarily mean a patient will move into full consciousness (he certainly didn’t think that would be true for Lilia). MCS minus can simply mean that the patient exhibits very minimal consciousness all the time at very low levels of detectable awareness. He also emphasised that moving into MCS minus does not necessarily lead to a better quality of life. 

Dr Hanrahan also spoke about the possibilities of pain and distress – and suggested that these might be the first and most persistent sensations that could come back for a patient who moved from a vegetative to a minimally conscious state: pain from a pressure sore or being unable to move, or the sensation of a full bladder. These negative experiences might take up all the available “bandwidth” in a patient’s brain, so there might be little room for any pleasurable experiences.

The father’s perspective

After Dr Hanrahan we heard from Lilia’s father. This began to give us more of a picture of Lilia as a person – who loved Japanese music, enjoyed nature, and had great respect for animals. He was quite emotional, in a controlled sort of way. It was hard to listen to. You couldn’t help but feel sympathy and a knot in the stomach.

He felt his daughter would value any life at all, and he was not convinced that she had intended to kill herself. 

He was quite hopeful that his daughter would become minimally conscious and that he might be able to offer her comfort. He used a German work – “Einfühlung” to express a component of empathy that refers to shared experience – whether it can be processed in a more sophisticated way or not. His view was: “I would like her to be afforded the benefit of the doubt to experience the sensations of companionship, even if she might not have the cognitive ability to process that”.

Lilia would, he said, value life in the minimally conscious state just as she valued the life of an insect, or any living creature regardless of where it was on some arbitrary hierarchy of cognitive ability. He recognised that she might experience “light and dark” in the minimally conscious state, but “for all of us life does involve a mixture of positives and negatives”. 

He felt she would be protected from disproportionate suffering either by going back into a completely unconscious state (either spontaneously though a bodily “instinct” to revert to unconsciousness or through good symptom management). He said he was reassured to know that she was highly unlikely ever to regain sufficient cognitive function to be aware of what she had lost. “We are all grieving Lilia’s loss but that is our grief, our loss – not something she will be aware enough to experience.”

The mother’s perspective

Lilia’s mother spoke more briefly but she was direct and to the point. She talked about what Lilia was like, echoing some of what was said by Lilia’s father, and adding additional detail and perspectives. Lilia was one of the kindest and most thoughtful people one could meet, said her mother. She was loving and adventurous and “wanted to couple her passion for caring for others with her knowledge of science” to become a paediatric audiologist. She had made a list of adventures she wanted to have including visiting the giant redwood forests of California.

Lilia’s mother was not hoping for the possibility that Lilia might move into the minimally conscious state. She said that if Lilia were to become aware of her situation that would be “a fate worse than death”. “She is in a vegetative state and is likely to remain that way, or at worst would get to the minimally conscious state and would be able to feel pain and suffering”. She saw Lilia’s future now as “lying on a bed with muscle atrophy and ongoing complications” and referred to the infections, MRSA, and tongue damage that Lilia had already undergone. She referred back to what Dr Hanrahan had said about “any happiness that she might be able to achieve would be overcome and saturated by discomfort”. For Lilia’s mother, the fact that Lilia would be unable to communicate was devastating: and she emphasised the importance of communication as a “fundamental human right” and a core element in quality of life. Lilia’s mother felt Lilia no longer had a life she would value and that: “She deserves to be allowed to die with dignity”.

In her statement Lilia’s mother referred to evidence in the court bundle that Lilia had spoken to her best friend after a TV programme saying she wouldn’t want to be kept alive in a coma, and had also spoken to her therapist about the possibility of brain damage following a suicide attempt, saying “that would be bad”. 

Later the barrister representing Lilia referred to a whole series of statements from Lilia’s family (mother, sisters, grandparents) and from her friends – all stating that they believe the Lilia they know would not have wanted to be kept alive in her current (or likely future) state. A friend had reported that “It was about experiences for Lilia, rather than thoughts: she enjoyed being outdoors, she treasured experience”. Her younger sister said “she would be stuck in a place and have no way of communicating. The best case scenario would not be enough for her and I really hope she can rest in peace”.

Our reflections

However reasonable and loving the father’s point of view seemed at first, in the end it really felt like he was thinking more about what he wanted for himself than thinking about what his daughter would want. His view was (as the judge said) an “outlier”.  Of course a minority view may give valuable insight, but his distinctive opinion about what Lilia would want did not seem to be rooted in a closer understanding of her, or based on particular conversations. Indeed, it turned out that father and daughter had been estranged for a year, and only reconnected the week before her suicide. That must have been very painful and we felt he wanted to keep hold of what little he could. 

We didn’t find his extrapolations about her respect for life convincing either: she loved animals but does this mean she wouldn’t have taken a severely injured dog to the vet to be put down if she felt it was suffering? It was also unconvincing that she hadn’t intended to kill herself: she had written a suicide note and gone to considerable lengths to get the means to end her life, and timed her attempt carefully (she was subject to 20-minute repeat observations in a psychiatric unit). Obviously, she might have been helped and recovered, but her intentions at the time seemed clear – and her actions appear to us to counter her father’s position that she would never think that ending life was justified. As her mother said, “She chose to kill a human. She chose to kill herself”

Like any observers we were very aware that we bring our own perspectives, values and experiences to what we see – and in this case talking with one another we were aware of some differences in our responses.

I (Abi) don’t think I would want to be sustained in a condition anything like Lilia’s and I didn’t find any convincing evidence that she’d want that either. But I could completely understand how her father felt and sometimes it feels right to “give the benefit of the doubt” and keep open the possibilities of something better. However, I felt that the father’s arguments were more towards the benefit of himself. As I listened to what was said I came to believe that Lilia should not be kept in this state any longer. I would personally find it really hard to be involved in a decision to let anyone I love die and I have been contemplating what I would want to happen if I were in an unconscious state. 

I (Ffion) felt a bit more strongly than Abi about what was the right outcome in this case. I hope to one day become a funeral director: how people want to go, how they want to be remembered is very important to me. Personally, I also really value autonomy for myself, the ability to reflect and make choices. I particularly react against the idea that it might be a good thing that Lilia would never have insight into her condition. Her father found that “heartening” and I can see that it would protect her from distress. But to me, a lack of insight, and an inability to reflect on one’s own life, would be a profound indignity. Of course I don’t know Lilia – but I got a sense of her as a person who wanted to make her own choices and take control. If I’d been the decision-maker, I’d have wanted to hear more about her values around this to overcome my own instinctive rejection of such existence on her behalf. I also felt it would be selfish to keep Lilia here so she could have the very limited experiences possible in MCS and so her father could hold her hand. I felt that even as her father was humanising Lilia he was treating her like an object, to be visited. Would Lilia want to spend a life lying in bed, or propped up in a chair, unable to do anything for herself day after day just to have times when she could share a sense of comfort? It was very shocking when the father argued for Lilia to be moved to a particular hospital setting – and it turned out this was the hospital where Lilia’s mother worked and she was utterly opposed to this idea. So, what he was proposing to impose on her, as Lilia’s mother, seemed oddly off-key, self-centred and misguided. It also seemed to ignore Lilia’s own concerns: in her suicide note Lilia had expressed her regret about the impact of what she was about to do on her family and urged them to use her money for grief counselling. She was eager to be the giver (not just the recipient of) care. “I won’t be there to comfort you” she wrote; “What I can do is give you someone else to support you. It is the last thing I can do for you”. 

The judge

We were both relieved when Mr Justice Williams concluded the hearing with an oral judgment saying that it was not in Lilia’s best interests for life-sustaining treatments to continue. “I am sure” he said “she would not want to live the life that is in prospect for her”. 

The judge tried to keep Lilia central at all times. Even her pseudonym “Lilia” was informed by this determination to recognise her as the unique person she was. The judge set the tone at the very start of the hearing by saying he would not speak of her by anonymising initials – the “CD” of the judgment name. Instead he used her real name during the hearing, and he invited her mother to choose a pseudonym for the published judgment that her daughter might have liked. This was the one point at which her mother smiled: after speaking with her other daughter (who could not bring herself to attend), the mother said they’d agreed that she would have liked to be anonymised as “Lilia” – the name of her favourite teddy bear.

Editorial note: This is the second blog by undergraduate students studying journalism, media and culture at Cardiff University, supervised by Professor Jenny Kitzinger. For the earlier blog click here – and for Jenny’s reflections on the process of mentoring students to observe COP hearings click here.

Abigail Brown and Ffion Power are both second year undergraduate students studying journalism, media and culture at Cardiff University. 

Photo by Oxana Lyashanko on Unsplash

Delay in a Section 21A Challenge to the Capacity Requirement

By Celia Kitzinger, 16th March 2021

Editorial note, 18th May 2021: Another blog about this case, with some very useful background information concerning the causes of delays, has now been published. It’s by Ashley Bradley, of MJC Law, one of the solicitors involved in this case. You can read it here.

Mr B is in his late fifties and he hates where he lives – in a self-contained flat in a care home for people with mental health problems.  He’s described it as “like a prison”.

He can’t leave and live somewhere else because he is deprived of his liberty under a “standard authorisation”, due to expire in about six months time.  

Mr B has a diagnosis of schizophrenic disorder – and schizophrenia is one of the care homes “specialist care categories”.  He has struggled in the past with independent living (paying rent, managing repairs, household tasks). He has been vulnerable to exploitation in the community.  In his current home, he receives regular care and support from staff members. 

Nonetheless he’s “relatively independent”.  He prepares his own meals in his kitchenette, although he complains about having only a microwave and no oven or hob so he’s limited in what he can cook.  He’s described as “independent with self-care and compliant with his medication” (i.e. he washes and dresses himself, manages the laundry, and takes his pills when prompted). 

He’s been saying for at least a year that he wants to leave the care home and live “in the community”.  He accepts that he’d need a package of support (e.g. to help him manage his money and medication) and he’s content to accept visits from a Community Psychiatric Nurse (“to check I am okay and mentally well”).  

He was challenging his deprivation of liberty at a hearing before Mr Justice Cobb (COP 13536008) on 15th February 2021. 

The main basis for the challenge is that Mr B has the mental capacity to make his own decisions about where he lives and what care he receives.  He says he has that capacity, and so does the independent expert consultant psychiatrist appointed by the court.

One obviously concerning aspect of this case is that Mr B’s (possibly unlawful) deprivation of liberty has been going on for a long time.  I’m not sure when he moved into the care home, or at what point he started objecting to living there, but proceedings challenging his detention began more than a year ago, in January 2020.   

And still no final determination has been made.  A final hearing has been listed before Mr Justice Cobb on 27th April 2021, which will be sixteen months after proceedings began.

Right to Liberty

Nobody disputes that Mr A is deprived of his liberty.  It was agreed that the conditions of his detention meet the ‘acid test’ in  P v Cheshire West and Chester Council; P and Q v Surrey County Council [2014] UKSC 19 (” Cheshire West“): he is “under continuous supervision and control and is not free to leave”.  Although he can “access the community” (I think this means he’s allowed to walk out of the care home grounds and get a bus into town), he must tell staff where he is going and when he’ll be back, and if he didn’t return when expected they would report him missing to the police.

Article 5(1) of the Human Rights Act states that: “everyone has the right to liberty and security of person. No one shall be deprived of his or her liberty [unless] in accordance with a procedure prescribed in law”.  

The Deprivation of Liberty Safeguards (DOLS) is the procedure prescribed in law in England and Wales when people are deprived of their liberty in care homes or hospitals.  

It was introduced into the Mental Capacity Act 2005 after the important case of HL v UK – “the Bournewood case”.  (For a compelling account of what happened, and its human rights implications by the family involved click here).  For the purposes of this blog, the key point is that the European Court of Human Rights found that the UK was in breach of Article 5 of the European Convention on Human Rights in relation to the detention of incapacitated people. The court said there should be procedural rules by which the admission and detention of incapacitated persons is conducted.

The procedure now laid down to be followed is that the care home or hospital that thinks it needs to deprive someone of their liberty (the “managing authority”) has to ask for this to be authorised by the local authority where the person is ordinarily resident (the “supervisory body”).   This is called “requesting a standard authorisation”.  It will only be granted if certain conditions are met: for example, the person must be living with a ‘mental disorder’, must lack capacity to make decisions for themselves about restrictions on their liberty relating to care and treatment, and the proposed restrictions must be in their best interests.  A standard authorisation lasts at most for a year, after which it must be renewed.

Article 5(4) of the Human Rights Act states that: “Everyone who is deprived of his liberty by arrest or detention shall be entitled to take proceedings by which the lawfulness of his detention shall be decided speedily by a court and his release ordered if the detention is not lawful.”

The Mental Capacity Act (MCA) 2005 provides for this via the appointment of a Relevant Person’s Representative’ (RPR) to represent the person who is deprived of their liberty. The RPR has the right to require a review of the person’s deprivation of liberty at any time and can also challenge it in the Court of Protection (under Section 21A MCA 2005).  There is no gatekeeping process: P has a right to apply to the court under s21A in his or her own right, irrespective of whether the RPR supports P’s application and RPRs should not allow their own views about the merits of an application to hold them back either from making the application themselves or from supporting P in doing so. The local authority is responsible for ensuring that an RPR and/or advocate fulfills the obligation to “act with diligence and urgency to ensure” to ensure that such challenges are “brought before the court expeditiously” and if not, should consider – as a last resort – bringing the matter before the court itself. This is all made abundantly clear in the judgment by Baker J in AJ v A Local Authority in which he held as a fundamental principle’ that there is an obligation on the State to ensure that a person deprived of liberty is not only entitled but enabled to have the lawfulness of his detention reviewed speedily by a court”.

So, in this case, Mr B has an advocate who instructed a legal team on his behalf to bring a case to the Court of Protection under s. 21A of the Mental Capacity Act 2005 to decide whether his detention under a standard authorisation is lawful or not.  

Mr B’s position

Counsel on behalf of Mr B, Tom Hughes of St John’s Buildings, submitted to the court that Mr B’s continued detention is unlawful.  This is because the independent expert report from November 2020 (based on interviews with Mr B in early October 2020 and again in mid-November 2020) concludes that Mr B has capacity to make all the relevant decisions. The expert psychiatrist found no evidence to suggest that Mr B’s mental illness impacted on his ability to understand, retain, weigh up, or communicate information about any of the decisions before the court.  

Counsel invited the court to decide at this hearing, on the basis of the expert report, that Mr B has capacity to conduct proceedings and to make his own decisions about residence and care.  As such, the mental capacity condition for continuing to deprive Mr B of his liberty is not met.  The court should then properly terminate the standard authorisation and conclude the proceedings.

Alternatively, if the court were not to accept the expert findings, and to find (as the local authority says) that Mr B lacks capacity to make his own decisions then – says counsel for Mr B – the condition of ‘best interests’ is not met, because Mr B is being restricted unnecessarily, and against his clearly and consistently stated wishes.  In that event, Mr B would want to move to a less restrictive environment as soon as possible.

There was no suggestion that the authorities should simply let Mr B leave the care home and wash their hands of him.  Mr B himself says that he requires various kinds of support, including help finding alternative accommodation, support with medication and assistance with his finances.  He should accordingly be entitled to relevant care under the Care Act 2014 and s.117 of the Mental Health Act 1983, and should be able to receive a package of support while living in the community.  That is what Mr B wants.

The local authority’s position

The local authority, represented by Gail Farrington of Wilberforce Chambers, does not accept the findings of the independent psychiatric expert.  The local authority relies in part on an earlier assessment (in September 2020) from a social worker carrying out a best interests assessment as part of the application process to renew the standard authorisation. That report finds that Mr B lacks capacity to make decisions about his accommodation and care.  The local authority identifies ‘gaps’ in the independent consultant psychiatrist’s report and says that those who know Mr B well believe that he has no insight into the level of care and support he needs.  He doesn’t understand what the consequences will be of leaving his current accommodation and the harm that could befall him as a result of this decision. They want to ask the expert further questions – or, if he is not available, to appoint an alternative expert.

“The need for speedy determination”

Over the course of more than a year, the court has had the opportunity to collect evidence on Mr B’s capacity and to make a capacity determination one way or the other. It still has not done so, and counsel for Mr B emphasised how harmful this delay has been.  He said it would cause “great distress to my client” if the outcome of the hearing were merely to continue to detain him and to delay the decision for another hearing – not least because Mr B knows that the expert psychiatrist believes him to have requisite capacity.

Counsel for Mr B referred to two recent judgments as mandating a speedy resolution to this case, both heard by the Vice President of the Court of Protection, Mr Justice Hayden.

In  DP v London Borough of Hillingdon [2020] EWCOP 45 (28 September 2020), Mr Justice Hayden said of section 21A cases that, “it is the duty of the court to determine whether the mental capacity requirement is met. If, as here, the judge was uncertain, then the obligation on the court was to investigate it further and to do so ‘speedily’”.  He reiterated later in the same judgment that “the guiding principle is the need for speedy determination of the lawfulness of detention mandated by Article 5(4)”.  

In London Borough of Tower Hamlets v PB [2020] EWCOP 34 (3rd July 2020), Mr Justice Hayden emphasised the importance of “the presumption of capacity” – as articulated in the MCA 2005 1(2): “A person must be assumed to have capacity unless it is established that he lacks capacity.”  This presumption, said Mr Justice Hayden “is the paramount principle in the MCA. It can only be displaced by cogent and well-reasoned analysis” (para. 51).  

Counsel for Mr B argued that there is now a cogent and well-reasoned analysis from an independent expert that Mr B has capacity to make his own decisions about care and residence, and that to permit the local authority’s request for yet further opportunity to rebut the presumption of capacity would run counter to the principle of speedy determination – and to the presumption itself.  There is a risk, he said, of setting the capacity bar too high (thereby discriminating against people with impairments in the functioning of mind or brain) and of falling into the trap of what Baker J (in CC v KK and STCC) has called the ‘protection imperative’.

The outcome

It’s the judge, and not the expert witness, who has the power and responsibility of deciding whether or not the person at the centre of the case has the relevant capacity.  

Faced with two conflicting reports – one from the expert witness saying Mr B does have the requisite capacity, and one from the local authority social worker saying that he doesn’t – the judge said it was “difficult for the court to reach a definitive statement”.

Having established that the independent psychiatric expert witness would be able to answer written questions from the local authority by the end of March and was able to appear before the court on 27th April 2021, he listed another hearing for that date.

The judge asked (as Mr B’s counsel had also proposed) for best interests to be considered in parallel with the continuing effort to establish the question of capacity.  This is (in my view) very important – and contrasts with other cases I’ve observed where questions of best interests have been delayed (on one occasion for years) until the issue of capacity has been resolved, resulting in insupportable delay in resolving issues for P. 

 An independent social worker will now be instructed to assess Mr B’s best interests in relation to residence and care and to produce an updated report on his wishes and feelings.   In the event that Mr B is found after all not to have capacity to make his own decisions about residence and care, matters can then still be progressed on 27th April 2021 without further delay.  As the judge said: “if in fact I have to make decisions around best interests, I need to know what the options are”.  

The judge asked for options to be investigated – including a detached building in the grounds of the care home that might offer Mr B more independence. Apparently Mr B had already been offered and refused that option – but it was still available and (as counsel for the local authority put it), a move to a more independent living arrangement still within the remit of the care home offers “an opportunity to provide evidence for the court going forward”.  

Mr B was in court during this hearing – although I did not see or hear from him.  He had spoken to the judge shortly before this hearing (as he did also back in January last year).  Mr Justice Cobb addressed him directly:

I hope. Mr B, you will understand that in order to make the best decision for you, I must be sure I’m making a decision that is sound and robust – and that when those who care for you challenge the conclusion of [the expert witness], I can’t brush that aside.  It seems to me right that I should allow them to put those challenges to [the expert witness] and see what he has to say about them.”

Reflecting on the option of the detached building in the care home grounds, the judge said:

“We discussed that in our chat before the court hearing.  I would simply say I think it would be helpful for you to have a conversation with the social work team about that.  It would offer you more independence and rather better cooking facilities than you currently have. That may be an advantage.  I would encourage you to think hard about that. Even if it’s a short term measure, it may be a better one than the one you currently have in your flat.”

Before leaving the (virtual) courtroom, the judge thanked counsel and the members of the public who attended (“thank you for your interest in Court of Protection proceedings”). His last words were “best wishes, Mr B and I look forward to seeing you on 27th April”).   This was lovely: it humanized the process and was much appreciated. But of course it in no way militates against the fundamental injustice that  – if I were P in this situation – I would feel was being perpetrated against me.  

Reflections

Like Mr B, I’m very concerned about the delay in this case. It seems that Mr B has not been allowed to exercise his right to “take proceedings by which the lawfulness of his detention shall be decided speedily by a court and his release ordered if the detention is not lawful.” (Article 5(4), Human Rights Act, my emphasis).

There’s been nothing “speedy” about it.  Mr B will have been deprived of his liberty for sixteen months since proceedings began – for five of those months (December 2020-April 2021) with an expert witness report stating that one of the requirements for authorising such a deprivation of liberty (lack of capacity) is not met.

The court has not been willing, at any point during the proceedings, to make a determination that the mental capacity qualifying requirement is met, nor to make a direction that Mr B lacks capacity.

I don’t understand why it took so long to get an expert report about capacity: the case was first heard in January 2020 and the expert witness did not meet with Mr B until early October 2020.  Obviously there was a pandemic, but many other capacity assessments were done during this period.

I am persuaded by Mr B’s counsel that the presumption in favour of capacity should mean – now that an expert capacity assessment reporting that Mr B has capacity is finally in hand –an end to the proceedings.  The counterarguments from the local authority did not seem to me very compelling ones and the way they were phrased often sounded as though they were at heart driven by concerns about Mr B’s vulnerability to exploitation in the community and a desire to ensure his welfare.  This is of course an understandable human impulse. But the drive to protect Mr B from the consequences of making what might turn out to be bad decisions is different from (and should not be confused with) the claim that Mr B lacks capacity to make those decisions.

I’m not entirely sure what will be gained by asking the expert witness further questions. The burden of proof is on those who claim that Mr B lacks capacity.  I await the next hearing with interest to see how this will work.

I am left dismayed that delays like this seem to be so common and so detrimental to P’s wellbeing.  We wrote about another case – concerning capacity for sexual relations rather than deprivation of liberty – in which it also took more than a year to establish that P had the requisite capacity (here) and I know about protracted delays in court decision-making in serious medical treatment cases (e.g. here).

From the point of view of an observer (without the bundle) it’s impossible to know why these delays occur, who is responsible for them, and what should or could have been done differently – but given the fundamental human rights at stake, delays should not keep happening without the organisations responsible being in some way held accountable and being enabled to improve their practice in future.

Postscript (added 18th May 2021)

This case did not return to court. The standard authorisation by which Mr B was deprived of his liberty was terminated on 26th April 2021, after the local authority withdrew its objections to the independent consultant psychiatrist’s evidence. This was 15 months after the first hearing (on 27 January 2020) at which oncerns were raised on behalf of Mr B that the evidence before the court in relation to his capacity was not sufficient to rebut the presumption of capacity on a final basis. I am grateful to Ashley Bradley of MJC law, one of the solicitors involved in the case, who provides a careful chronology and account of the cumulative effect of various delays, especially in the context of the pandemic (here). She says:

Perhaps a wider point for consideration is how the process of obtaining a capacity report under s49 of the Mental Capacity Act 2005 can be improved, especially when the need for speedy resolution is paramount. NHS trusts are under increasing pressure due to the sheer volume of s49 requests they receive on top of their everyday clinical work and the quality of reports that the court receives varies. In this case, the s49 assessor reached a conclusion that Mr B lacked capacity following one 30 minute visit that was terminated early by Mr B. They declined a second visit despite requests from Mr B’s representatives and in all, spent longer speaking with staff than actually assessing Mr B. In contrast, the independent consultant psychiatrist spent approximately 2 ½ hours with Mr B over 2 separate visits which helped Mr B’s engagement with the assessment.”

Please read her blog for more information.

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

Photo by NeONBRAND on Unsplash

How not to do open justice in the Court of Appeal

By Celia Kitzinger, 10th March 2021

Editorial Note: The judgment has now been published (click here). It includes this (para. 23): “Regrettably, however, and in breach of the requirements set out in para 33 of PD52C, the parties’ open skeletons were not all formulated in a way they considered suitable for disclosure to court reporters. As a result, the court was unable immediately to meet requests by two observers to provide the skeletons, and it was more difficult for those observers to follow the arguments during the hearing. In future, this is a point which should be considered by the parties and the court during preparation of an appeal.

Imagine that your teenage daughter is in hospital with life-threatening anorexia. 

The local authority decides that you, her mother, have a negative impact on your daughter and starts legal proceedings.

The case wends its way to court and is heard before Mr Justice Hayden in the Court of Protection in November 2020.  

He orders that – despite her consistently expressed strong wish to return to live with you in the family home – your daughter must move to residential accommodation where her contact with you will be limited to one supervised visit each week.  

Now imagine that this decision was made in private – after members of the public who sought to attend were turned away. (I know. I was one of them.)

Imagine that the judgment has never been published.

Imagine, further, that you, her mother, were excluded from the decision-making process – because the judge decided not only to withhold information from you but also (without any party applying for this) to remove you as a party.

It sounds like a nightmare.  It sounds draconian.  It sounds like the “secret court” at its worst.  

No wonder the case is now in the Court of Appeal, where P’s mother is appealing the decision before Lord Justice Peter Jackson, Lord Justice Baker, and Lord Justice Warby.

This is as much as I was able to pick up from the Court of Appeal hearing on 9th March 2021 about a decision in the Court of Protection by Mr Justice Hayden on 3rd November 2020.  

I don’t know much more than this – and what I think I “know” may not even be accurate – because I was denied access (at least for the time being) to skeleton arguments and other documents relating to the case.  So too was the only journalist in attendance, Brian Farmer.

Skeleton arguments

Each party normally submits a skeleton argument (or “position statement”) to the court before the hearing. This is a document setting out the party’s position, a list of identified issues, the essential facts of the case, and the salient points of legal argument, including the text of key statues and case law.  It states what the party wants the court to decide and what the legal basis for that decision would be.  The skeleton argument has to be filed and exchanged with other parties before a hearing, and is the foundation for the oral argument in court.

Skeleton arguments used not to exist as formal documents because, historically, advocacy relied on oral argument alone.  They arrived on the scene relatively recently with the Woolf Reforms and the Civil Procedure Rules in 1998.  Today, they’re a time-saving device to avoid lengthy oral presentations.

This was made very obvious at the beginning of the hearing when Lord Peter Jackson announced briskly to the advocates: “We have read everything. You don’t have to take us through a detailed chronology”.  Hearing this, my heart sank: it meant the court would rely on information culled from the skeletons (which I didn’t have) and that oral argument would be limited.  (It’s always much easier for observers to follow a case when a judge admits to not having read all the documentation!) There’s clearly a case for saying that skeleton arguments should normally be available automatically to observers in a public hearing and provided to us by counsel in a suitable format.  I’ve received them previously, without hassle, in Court of Appeal hearings.

Knowing the ‘person-centred’ nature of Hayden J’s decision-making, I’m sure there’s a lot more to the Court of Protection decision he made than I’ve managed to piece together here. Without the skeleton arguments, I simply don’t have the information I need to understand either the process or the outcome, and I’m willing to suspend forming my own views about the matter pending further information about the facts and law underpinning the case.  

But what alarms me is that, as a member of the public refused access to the skeleton arguments, this was the only information available to me after the first two hours of the Court of Appeal hearing.  If I’d not been a seasoned observer of Court of Protection hearings, this experience would have reinforced every prejudice and stereotype any journalist has ever expressed about “the secret court” and its draconian powers.

The hearing

At the Court of Appeal, the applicant (P’s mother) was represented by Tim Nesbitt QC (with Alex Cisneros).  The respondents were the local authority represented by Katherine Barnes; P (via the Official Solicitor) represented by Fiona Paterson; and the Mental Health Trust represented by Nicola Greaney.  

My understanding of Hayden J’s decision is based largely on the summary provided by Tim Nesbitt QC who provided a brief introduction to the case in the Court of Appeal.   He said that the “essence of his case” was that “the procedure adopted in the 3rd November hearing did not allow the appellant sufficient involvement in the decision-making process”. He said, “whatever caused the court to act as it did, even if it justified some degree of exclusion, it could not justify the wholescale exclusion of my client from participation in the procedure.”

It turned out that Tim Nesbitt QC was himself at a disadvantage in presenting his client’s case since there is “closed material” that he hasn’t seen: I understood that he would be granted access to that material in a “closed session” (which press and public would not be able to attend) that afternoon. 

Lord Justice Baker asked counsel repeatedly: “is there any case in which a party has been discharged in this way, in any proceedings? Without notice, without evidence, without reasons?”  

I couldn’t really follow the answers because counsel answered with reference to case law I didn’t know, cited in paragraphs I couldn’t see, in skeleton arguments I wasn’t allowed to have. 

I regularly google case law (and statute) during hearings – I don’t know enough law to be able to follow the reasoning otherwise.  But it’s hard to google cases without having their full names and neutral citation numbers.  I eventually found a case I heard initially as “Eva’s of Germany” (it’s Evvers v Germany!) but I can’t  find another case cited by Nicola Greaney  that I hear as “the Toother-Gas Decision” and it remains a mystery to me.

I did manage to find) Cobb concerning KK  and Z v Finland which are pertinent to Tim Nestbitt QC’s argument that excluding a party from making submissions, from filing evidence, from knowing an order is being made should only be done “when the situation imperatively demands it” and it is “strictly necessary”. (“What does ‘strictly’ add to ‘necessary’?” asks Baker LJ.) But I can’t find Hedley in M or Lady Hale In the matter of A, or Munby in Re B (apparently referred to in paragraph 36 of the skeleton).  

What’s so frustrating about all this is that these arguments go to the heart of open justice.  They are (I think) about what constitutes a “fair trial” (Article 6) and about the extent to which the state can interfere in private and family life (Article 8) – key human rights concerns.  They address issues of the right to privacy, the protection of personal data, and the limits of disclosure.  These are matters of fundamental public interest.  

Journalists and the public need to be able to scrutinise the ways these decisions are made and report on that to others.  But without these skeleton arguments, I found the oral presentations and discussion impenetrable.

A failure of open justice

At the beginning of the morning session, I asked for the skeleton arguments – via emails to counsel and to the clerk.  The judges declined access on the grounds that there was insufficient “head-space” to consider whether or not I should be sent them while the substantive business of the appeal was in progress.  The matter would, said Lord Peter Jackson, be considered during the lunch break when it would be assessed “whether the documents are in a condition where they can be disclosed”. 

I gather that there were in fact two skeleton arguments for each party – one for the “open” court and one for the “closed” session but it seemed that the “open” skeletons had not been redacted appropriately and could not be sent out until after the hearing.  I have still not received them.  I do not understand why the court seemed unprepared for requests for  “open” skeletons in “open” court.  Shouldn’t they have been redacted ready for the public and press in advance?  It’s almost as though they didn’t expect observers to be present in open court.

Litigation is a public process and this Court of Appeal judgment was (supposedly) held in open court.  Certainly they opened the virtual court door and let me enter.  But without access to key documents referred to at the hearing, I might as well not have been there.  I wasn’t able to follow, or scrutinise, the court decision-making process. 

I did not aspire to see the “closed” materials or to know the names and personal details of P and her family. The requirements of open justice were more modest. I simply wanted enough information to understand and assess for myself what the Court of Protection judgment said and what the reasoning was behind the arguments for and against appealing it.  This could surely have been accomplished by sending me the redacted skeleton arguments in a timely fashion at the beginning of the hearing.  Without them, I was lost.

After two hours, I gave up and left the hearing.  

I’m left unsure whether this was an administrative failing (counsel should have prepared anonymised/redacted skeletons ready to hand out and the judges should have told them so), or whether, in fact, the sensitivities of the case were such that we should have been told upfront that this was a “private” hearing, and asked to leave.

My reading of the situation is that perhaps the court had simply assumed that press and public would not be there – a historical legacy of nobody attending hearings – so hadn’t taken the time to address issues of transparency, and then felt ambushed by me and a journalist asking inconvenient questions. 

Lord Justice Jackson did say at one point that if we had requested skeletons earlier, then it might have been possible to release them during the course of the hearing. But I am not sure how it would have been possible for me to make a request any earlier than I did.  The hearing was only listed after 4pm the previous afternoon – and I wasn’t even sure it was the hearing I was looking for, since it was listed as an appeal from the Family Court, not the Court of Protection.  My first request for the skeletons was sent to counsel at 10.18am (for a hearing due to start at 10.30am). This was as soon as I received joining instructions and had logged on to the video-platform and could see who counsel were, and hence to whom I could address such a request. Perhaps the court should consider adding to the listings an email address from which the press and public can request skeletons in a timely fashion? 

In my view this was a failure of open justice.

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

Photo by Ed Hinchliffe on Unsplash

Visual Monitoring, Deprivation of Liberty and Human Rights

By Claire Martin, 6th March 2021

Inspired by the Open Justice Court of Protection Project, I have attended several Court of Protection hearings over the past 8 months (and blogged about some of them too).  As a psychologist working with older people in the NHS, I have found these observations valuable continuing professional development.  They are a great education in how mental capacity law is practised and just so compelling on a human level.  They reveal how our treatment and care might be navigated, should we lose capacity – and that’s something that potentially affects us all.  

I had a little bit of time on a Thursday morning so I applied to attend a hearing (COP 13575520) on 11th February 2021 at 11.30am at Wrexham County Court before Her Honour Judge Howells.

The case, listed for a pre-trial review, was for a man I will call David (not his real name). The hearing focused on the expert evidence which had recently been filed from Dr McCorry (Consultant Neurologist), what issues could be agreed, and what issues needed to be determined at a final hearing. 

Counsel for David (who was the applicant), via the Official Solicitor was Emma Sutton of Serjeants’ Inn, instructed by Sarah Newport. She  gave a very helpful summary of the history and background issues of the case for observers. 

Judge Howells concisely explained the principles of open justice and why observers were present. I counted about 15 others in the hearing – one was a trainee judge, so there were perhaps more than ten public observers. 

The issues being discussed in relation to David’s care were: 

  • Whether the ongoing use of a visual monitoring system was agreed; 
  • Whether any declarations/costs sought on behalf of David were agreed; and, 
  • (if not) further case management and listing to a final hearing (which is what happened). 

It turned out to be an eye-opening hearing, not really due to the care issues in question but in relation to the apparent lack of correct process followed by the respondent public bodies responsible for oversight and provision of David’s care. 

David is 39 and has a severe learning disability, poorly controlled epilepsy and congenital cerebral palsy with right-sided hemiplegia. David’s consultant neurologist describes his epilepsy as “‘very poorly controlled’ with ‘daily unpredictable seizures’ of ‘multiple different types’.  David has ‘limited communication’ and is able to express in-the-moment needs, such as feeling hungry. He likes cars, going on trains and visiting caravan sites. 

David’s package of care is jointly funded by the Local Authority and the Health Board (the respondent public bodies in the case).  He lives in a care home and receives 56 hours 1:1, and 42 hours shared care each week.

He has lived, happily it seemed, in this care home for about 18 years. His place of residence was not in question at this hearing, neither was his lack of capacity to make the following decisions, which all parties (at previous hearings) had agreed he lacks capacity to make:

  • Litigation
  • Residence
  • Care and support
  • Use of a helmet for protection due to epileptic seizures (David himself was reported to be happy to wear it and the court had seen pictures of him wearing the helmet)

So, the areas of contention were around his overall care needs, whether they necessitate night-time video monitoring (and indeed whether that would effectively achieve the desired outcome of ensuring David’s increased safety) and whether any established failures of the public bodies to follow the best interests process contained in the Mental Capacity Act 2005 should result in them paying David’s legal costs. 

David’s Care: What Happened, When, and the complexities of agreeing this in a Court Order

We learnt that David’s care team had had a meeting on 5th April 2019 about his care needs.  At this meeting, they decided to install a visual monitoring system (VMS) in his bedroom, allowing them to observe him during the night via a hand-held video-monitor. 

I was not clear why this was deemed necessary at that time specifically – that information would likely have been provided in the court bundles at earlier hearings. I deduced from this hearing that the care team was concerned about David’s epileptic seizures and his safety when unmonitored (principally through the night). 

No best interests meeting had been convened prior to this meeting on 5th April 2019 and Counsel for David asserted that there had been no consultation with the family about its use. No deprivation of liberty authorisation was in place regarding David’s residence within the care home until eight months later (8th December 2019), when the Local Authority granted one, however that did not provide authority for the use of the VMS, which was a separate best interest decision. 

One of David’s parents is a respondent in the case and was present at the hearing. It is important to know that she lives abroad and is closely involved (along with David’s sister) in his care. She told the court that she has always been included and consulted about decisions for David’s care. She speaks to him weekly via video-link and is clearly a strong advocate for, and cares deeply about, his wellbeing. It must have been a shock to her only to have learnt about a video monitoring set up, which means he can be watched without his knowledge, a full year after it was installed. 

Without sight of previous orders and documents in the court bundles, it was quite easy to muddle up the chronology of what happened, when. My understanding of the timeline is as follows: 

  1. In 2019, David’s care team becomes more concerned about his seizures, and their ability to monitor them and be present to ensure his safety. 
  2. They convene an MDT (multi-disciplinary team meeting) on 5th April 2019 and decide to install a VMS in his bedroom to enable observation during the night.
  3. There was no consultation with David’s family at this point, which is stipulated (section 4(7) of the Mental Capacity Act 2005). 
  4. The Local Authority granted authority for David to be deprived of his liberty on 8th December 2019 by way of a standard authorisation– this did not provide authority for the VMS; 
  5. On 20th February 2020 an application was made on behalf of David pursuant to section 21A of the Mental Capacity Act 2005, to challenge this standard authorisation. 
  6. Judge Howells has presided over David’s case since 5th March 2020. At this time, an interim order was made authorising the VMS pending further order. This was the first time it was authorised. 
  7. A consent order was put in place on 6th November 2020 with agreements made up to that point.
  8. A pre-trial review was set for 11th February 2021 (this hearing) to resolve the outstanding issues.
  9. The expert witness filed their report late, meaning that clarifying questions could not be submitted and answered in time for the hearing. 

One thing I was confused by (during the hearing) was the assertion by counsel for David, in their position statement, of public bodies: “failing to ensure that P was lawfully deprived of his liberty for a period of 3 years and 7 months between 20 May 2016 until 8 December 2019. During that period, P had no access to an RPR/ IMCA which included the period when the visual monitor was installed.”

As set out above, I have since learnt that authorising a deprivation of liberty by way of a standard authorisation is separate and distinct from authorising an intrusive form of monitoring (via a VMS) which requires a separate best interests process. The fact that a separate process was required (and a separate best interest decision in the event of a dispute) was accepted by all parties, and the court. 

There was some wrangling about the exact chronology and wording regarding the declaratory relief sought on behalf of David, particularly in relation to the failure to consult David’s family and those with an interest in his care (as per s4 of the MCA 2005), and the failure to arrange a best interests meeting regarding the VMS prior to the issue coming to court. 

There was also discussion of whether such wording could be in a recital (as opposed to a declaration). There were a number of declarations made (under section 15 MCA 2005) by the court, and (in the end) one recital. This hearing has been an education for me, as I now understand what ‘recital’ and ‘declaration’ mean in court judgments. In this blog from 2019, John Bolch clarifies: 

“A recital to an order essentially contains anything relevant to the order that cannot be, or is not, actually expressed as an order. It is important to understand here that the court can only actually make an order if it has power to do so, that power usually given to it by statute. Thus anything relevant that the court does not have power to order must be included as a recital to the order. This is true even if the parties have agreed to the thing.

Recitals also have other purposes. In particular, they may set out the background to the order, which can be useful if the order has to be interpreted at a later date. A common example of this in an agreed (consent) financial remedy order is a recital which confirms that the parties agree that the terms set out in the order are accepted by them in full and final satisfaction of all financial claims by either party against the other.”

During discussions about dates and meetings Judge Howells stated: ‘I can only make declarations if the process has been agreed. Do these narrow issues add anything?’ (Judge’s emphasis)

Counsel for David stated clearly that the amended wording suggested by the Health Board was factually inaccurate. She outlined again the dateline for the first best interests meeting following a court order, which ‘doesn’t make sense’. She pushed about this, stating that a best interests meeting 5 months after court proceedings have started is not consultation: ‘The issue is that no meeting was arranged prior to the installation of the VMS – that is a fact’

The judge further intervened at this point, to summarise that it’s not only the installation of the VMS but also its use, that is in question, as well as when proper consultation began. She asked David’s parent: ‘Do you agree with [the Local Authority/Health Board] position – were you consulted?’ David’s parent replied: 

 ‘Not entirely – I was made aware [of the VMS] but not really consulted. Consultation only came about because of court action – not the Health Board doing it of their own initiative.’ 

At this point I was thinking about the spirit vs the experienced reality of ‘consultation’. What was the actual process like for David’s parent (especially trying to be part of things whilst living abroad)?  What is the definition of consultation? The Oxford English Dictionary defines it as: Consultation: noun The action or process of formally consulting or discussing. “they improved standards in consultation with consumer representatives”.

It didn’t seem to feel like a formal process of discussion from her perspective, illustrated by her words: ‘I was made aware’, which has the flavour of being informed, not consulted. The consultation was ‘after the event’. 

I have had many encounters myself over the years with people in caring or treating roles, and with my parents (mostly in hospitals), and the range of what different people thought constituted ‘consultation’ (either with me, my parents or with me as their relative with LPA for Health and Welfare) has been as wide as a church door. My own sense is that, what determines whether people truly consult, is their belief about who should have the decisive say-so about someone’s care and treatment (Is it me, you, someone else …. or is it us?). Who ‘owns’ the decision? I also know, working in health care myself, that generally people do what they think is the right thing for a person’s care. The issue, as I understood it here, is not so much that bad care is thought to be happening, but that the legal process of who has that decisive say-so has been (allegedly unlawfully) purloined by the public bodies responsible for David’s care. 

There was a nagging thought throughout this hearing for me – I wasn’t sure why no consultation or seeking of authorisation about the VMS decision had been done prior to its use. The care team was not there to speak for themselves (though they might have had that opportunity at earlier hearings, or provided submissions, I am not sure). I also wondered about the level of support and training David’s care team might, or might not, have had. Did they realise that a VMS constituted an intrusion and potential violation of his human rights? If not, why not? See the comment by Adam Wagner (below) regarding the duty of organisations to ensure that staff are fully versed about MCA provisions. 

Counsel for the Health Board, Thomas Jones, requested that the declaration ‘record that there was in fact – albeit late – a meeting in July 2020 with all present, where best interests for the VMS was discussed’. My understanding is that this meeting would still have been 15 months after the installation of the VMS. He said that, if it is not agreed to acknowledge that meeting in the declaration, then the Health Board would ‘see it as creating an incomplete picture’. Counsel for the Local Authority, Robert Goodwin, supported the Health Board’s requested caveats.

The judge clarified with counsel that ‘the Health Board needs to know over what period they are said to be in breach – does that satisfy your concerns?’ There was then discussion about the facts of meetings dates that were not in dispute. Counsel for David argued for a factually correct wording in the declaration that ‘a best interests meeting was arranged 5 months after proceedings were issued’. All parties agreed. The judge said she was ‘grateful for the pragmatic view that the Health Board and Local Authority have taken in relation to proceedings today in agreeing these matters’. This meant that further litigation regarding declaratory relief was unnecessary as the public bodies accepted that they had acted unlawfully as regards the MCA processes implemented regarding the use of the VMS. 

The public bodies accepted that the additional restriction of a VMS remained in place for a long period of time without external authorisation or advocacy to scrutinise the decision. And counsel for David raised a further, nuanced, point: that there remains no finalised plan for use of a monitoring device from the Local Authority and Health Board, and that this is needed to inform whether a VMS is indeed in David’s best interests. She, and David’s parent, have questions (now submitted to the expert witness) of whether, in fact, a VMS would be effective at increasing his safety to a point where it was a proportionate infringement of his Article 8 rights. These will be answered at the final hearing.

Additionally, it was not contested by the Local Authority (as the supervisory body) that David was unlawfully deprived of his liberty within the care home for a significant period of time, and that this was a separate ‘breach’ from the absence of an MCA process regarding the VMS. A separate declaration was made regarding this issue. 

Whether and how public bodies can be held accountable 

Whether (or not) a VMS in David’s bedroom will obtain the safety for him that is argued by his treating clinician and care team is one thing – there were questions around whether the two night-staff caring for eight residents would actually have eyes on the video at all times, and if not, whether this means actual increased safety for David, or just the appearance of increased safety, whilst simultaneously intruding upon his privacy. 

That the public bodies responsible for David’s care did not follow the statutory process for his care, is another thing. The facts of the matter and dates for seeking authorisation for deprivation of liberty were not really in dispute as the public bodies accepted (at the hearing) that they had acted unlawfully. The public bodies (Health and Local Authority) did not seek to follow a best interests’ process until the case was coming under the nose of the Court of Protection, and it was notable that the case was brought by David (not the public bodies seeking authorisation for their actions).  Counsel for David stated that there had been a ‘wholesale failure by either public body [to recognise that] that a video monitoring system required a best interests decision’.

As a result, she is seeking ‘declaratory relief’ for David (s15, 1 (c) MCA). The wording of the relief was agreed at the hearing and final declarations were made by the court. As a consequence of that position, counsel on behalf of David, confirmed that costs would be sought at the final hearing against the public bodies. 

Not knowing how frequently costs are awarded against public bodies in Court of Protection, I did a bit of research. Here is a 2011 Human Rights Blog, where Adam Wagner reported on a case (that went to the Court of Appeal) of a man with learning disabilities who was unlawfully removed from a foster carer. 

In summary, whereas the usual rule in Court of Protection cases is that there is no order for costs (that is, neither side pays the other’s costs irrespective of who has “won”), in particularly grievous cases of council misconduct – in this instance, relating to unlawful deprivation of liberty under Article 5 of the European Convention on Human Rights – the rule will not apply and the council will have to pay.”

In this case, Counsel argued that the conduct of the public bodies in relation to David’s care calls into question whether David’s Article 8 human right to ‘respect for your private life, your family life, your home and your correspondence’ had been breached, and also his rights under Article 5 as he was unlawfully deprived of his liberty within the care home for a significant period of time without authorisation. 

Of relevance, potentially for this case, Wagner states: “The complexity of the law was also no excuse: Given the enormous responsibilities put upon local authorities under the MCA, it was surely incumbent on the management team to ensure that their staff were fully trained and properly informed about the new provisions

I found other cases where costs (or partial costs) had been awarded against public bodies, here (2011) and here (2018). In the latter case, Mr Justice Newton was excoriating in his comments regarding a Local Authority’s repatriation of someone in their care to their home abroad:

Without hesitation I conclude that the circumstances of this case are so poor and so extreme (both in relation to institution of proceedings and their subsequent conduct) that I should make an order that the costs of the proceedings should be born (sic.) by the Applicant and Second Respondent. …. They are both public bodies, I simply make an order against both jointly and severally.”

Following Munby (again here), what is considered ‘good reason’ to depart from the general rule of no costs, will be the litmus test in relation to costs sought in David’s case.

My reading of when the Court of Protection might depart from the general rule of ‘no costs’ (rule 19.3 of the Court of Protection Rules 2017: “the general rule is that there will be no order as to the costs“) started here, with Sir James Munby in 2014 (President of the Court of Protection at the time):

Where there is a general rule from which the court can depart where the circumstances justify, it adds nothing to say that a case must be exceptional or atypical for costs to be ordered … Each application for costs must be considered on its own merit or lack of merit with the clear appreciation that there must be a good reason before the court will contemplate departure from the general rule.”

At this hearing, the Local Authority and Health Board did not confirm their position in relation to a costs order, and this will be a matter now for the final hearing. I was not especially surprised about this; public bodies are not rewarded for transparency (Daniel Thornton discusses this in his blog here on Improving the Transparency and Accountability of Public Bodies, though talks more about Government Agencies than Health and Local Authority bodies). 

In David’s case, the Local Authority’s position is simply that: 

The Local Authority is of the view that due to the matter needing to proceed to a contested final hearing it is not at the stage where it needs to confirm its position regarding either of these matters. The Local Authority accepts it has been put on notice of such by P’s representatives …..”

Final Thoughts 

It might well be the case that a video-monitoring system is the best way to respond expeditiously to David’s seizures through the night. There were clearly complex issues to understand from David’s medical consultant and the expert witness regarding best practice for David’s particular epileptic condition. His safety was clearly their over-riding concern. Interrogating how to best keep him as safe as possible, whilst also preserving his rights, seems to have been lost in the process – over many months. 

My lasting impression at the end of the hearing, which lasted just over an hour, was that all of this time and energy might have been spared if the team involved in caring for David had recognised that the action they decided to take was an intrusive one, that deprived him of his human right to liberty (Article 5) and privacy (Article 8). So, Deprivation of Liberty and best interest processes needed to be followed. 

Summary: What Happens Next? 

What was agreed at today’s hearing: 

  • Declarations under section 15 MCA 2005 
  • Questions to be asked of the expert witness
  • An interim best interests order to continue with VMS until the final hearing.

The outstanding issues, which will be addressed at the final hearing (which will be listed for 2 days) in April or May are:

  • the best interests decision for VMS, following the questions answered from expert. 
  • If the matters still need to be challenged this will come back to court.
  • If matters don’t need to be challenged (i.e. all parties agree) a consent order can be made. 
  • Whether the public bodies should be responsible for paying David’s legal costs.
  • In terms of updating evidence, Counsel for David stated that there was a ‘shopping list’ for the public bodies to attend to in order to fill in the gaps in relation to their management of David’s care and best interests. The judge noted that the public bodies ‘recognised some failings on their part’.

The judge asked for Position Statements forty-eight hours in advance to allow all parties to read and digest the contents. I hope to attend. 

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

Photo by Tobias Tullius on Unsplash

Treatment for testicular cancer for autistic learning disabled man

By Celia Kitzinger, 3rd March 2021

There was a positive outcome to the hearing before Mrs Justice Lieven on Wednesday 27th January 2021.  

After listening to evidence from the treating clinicians and an independent expert consultant in oncology, the Trust and the mother of “RB” (as he is called in the court documents) came to an agreement about the course of treatment he should have for his testicular cancer.  

There’s a published judgment about this case, which tells the story from the perspective of the judge (The Newcastle Upon Tyne Hospitals NHS Foundation Trust v RB [2021] EWCOP 11 (27 January 2021)). 

There’s a Tweet Thread about the hearing which describes how the story unfolded in court from the perspective of a public observer (Tweet Thread no. 3 here).  

This blog post foregrounds the story from the perspective of RB’s mother.   

She can’t tell this story under her own name because the transparency order protects her son’s identity and that of his family members.  She asked me to refer to her as “Joan” and to her son as “Simon”.   I spoke with her for about an hour and a half via a video-platform a couple of weeks after the hearing and she read through an earlier draft of this post and made changes to ensure it reflected her views and experience. I am hugely grateful to Joan for sharing her experience here.

Diagnosis

Simon is 30.  He has a diagnosis of Fragile X Syndrome, a genetic condition causing learning disabilities (and his younger brother has the same condition). He also has atypical severe autism, dysphagia, and limited verbal communication. He lives at home with his parents and brother and has a package of care, including attendance at a day care centre. 

Joan describes him as “cheeky” and “full of life”: “he has a beautiful smile and gorgeous long eyelashes- a lot of my women friends have said, ‘I would die for his eyelashes!’” He loves motorbikes: he sits on his dad’s bike, and “when he’s out and a motorbike goes by, his head will fly around to see where it is and he whacks his dad on the arm as if to say ‘look! There’s a motorbike!’”. 

In late September 2020, Simon was diagnosed with testicular cancer. Joan told me what happened.

“His dad was changing his pad while I was in the kitchen doing dinner and he shouted through to me and I said, ‘hang on a sec, I’m in the oven swapping stuff around’. And then I went through and he said, ‘come and look at his scrotum’. So I put a glove on and examined it, and it felt like it was big, with a lot of fluid, extremely hard and heavy. It felt really different from the right one which felt normal and squishy and moving about.”

Things moved quickly after Joan phoned 111 and was advised to take him into hospital immediately.

“I took him in and he saw a urologist and he wouldn’t get on the bed so they put the mattress on the floor and examined him, and the urologist went ‘hm!’ – and I’m starting to get a bit worried by this time.  He said, ‘It’s one of three things. It’s either a hernia, or a twisted testicle or a tumour.  He’s not screaming in pain, and he doesn’t have a temperature, so I think it’s a tumour, but I can’t say 100% until he’s had a scan.’ When I heard ‘tumour’ I went, ‘is it benign?’.  He said, ‘prepare yourself for the worst.’”

“No treatment options”

The scan did show cancer and an operation was scheduled for two weeks later, and Simon’s left testicle was removed. A couple of days later though, a CT scan showed that the cancer had spread into Simon’s lymph nodes. On 11th December 2020, Simon’s parents were advised that there were “no treatment options” and that “comfort measures would be most appropriate, as going ahead with treatment would limit Simon’s quality of life”.  A palliative care referral was made.

Joan describes her experience of this interaction:

I asked the doctor, ‘So what’s next?’.  The doctor dropped his head and looked at the floor and said, ‘There’s nothing we can do’.  I said, ‘Pardon?’ – not as in I haven’t heard you, but please bloody explain yourself.  He kept looking at the floor and saying, ‘there’s nothing we can do’.  So, I said again, ‘What’s next?’ – meaning, what kind of treatment? He said, ‘He’s got twelve months’.  To say I lost it is an understatement.  I was screaming, crying, punching the walls with my fists.  The learning disability nurse sat there like a rabbit in the headlights saying, ‘I’m so sorry’. Well, ‘Sorry isn’t what I want!’ I begged him, I put my hands before my face in the prayer position and I begged him to help my son and he kept saying ‘There’s nothing we can do’.  The day the doctor said he couldn’t do anything and my son had 12 months left to live, it was a case of we either accept it, or we do something about it. I’m not really one for saying, ‘Oh, okay we’ll do what you say’.  The Mamma Bear instinct kicks in.  I wanted to see what else could be done.”

Joan describes her own feelings during this period.

I was having nightmares when I was sleeping, and I wasn’t sleeping much. I was lying awake with all these thoughts going through my head at two o’clock in the morning about what it would be like for him, dying with testicular cancer, and is he going to be in pain and should I raise money to take him to Switzerland, you know, Dignitas, instead?  Looking at Simon and imagining him not being here and what it would be like to watch the cancer spread.  I lost my older brother to leukaemia, and my husband’s dad had cancer – and the thought of Simon going through that, the cancer being allowed to progress inside his body, I just couldn’t bear to see that. And it was robbing him of his life.  You either stay at the bottom of the well, or you climb back out, and I needed to climb back out for his sake.

“The power of Facebook and Twitter!”

Social media provided a life-line for Joan. She was in touch with a range of organisations, including Macmillan Cancer SupportCancer Research UK and their Facebook Group for men with testicular cancer (and their family and friends), “Checkemlads Testicular Cancer UK”.  Her Facebook friends included lots of people with learning disabled children, and she was getting lots of messages and offers of help.  She set up a (private) Facebook Group which attracted more than two hundred members.  She posted about what was happening and asked for help – and it was this that led her to Kirsty Stuart of Irwin Mitchell, the solicitor she instructed in this case. 

Both Joan and Kirsty also used social media to find an expert second opinion about what kind of treatment might work best for Simon.  It began when someone posted the story about Ian Shaw on Joan’s Facebook page.  Ian is a learning-disabled man who had testicular cancer.  As with Joan’s son, his doctors had said that nothing more could be done for him.  After his story appeared on the BBC, Ian was offered treatment at the Royal Marsden (the story is here).  Joan remembers feeling “shocked” when she read the story: it was so similar to what was now happening to her own son.  She thought the doctor who’d treated Ian Shaw would be a good person to have a second opinion from, so Kirsty Stuart tweeted the journalist who wrote the story about Ian, and the journalist responded and put Joan in touch with Ian’s mum.  Having talked to Jan Shaw at the end of December, Joan decided that he would be the right doctor to consult, and Kirsty then contacted him for a second opinion (paid for by the Trust).  Joan posted exultantly on her Facebook page about “the power of Facebook and Twitter!”.  

The legal case

When solicitor Kirsty Stuart[1] (and trainee solicitor Katie Wilkins) got involved, it was “the light at the end of the tunnel”.

Kirsty wrote to the Trust asking them to provide an assessment that Simon lacked capacity to consent to oncology treatment. She also asked them to convene a best interests meeting at which appropriate treatment options could be explored.  Joan describes the meeting.

It was an in-person meeting, on 7th January 2021.  They said they wouldn’t be able to offer BEP chemotherapy because he’d need to be sedated to be given it and that just wasn’t feasible for more than 70 hours of treatment.  There was a modified treatment plan they were willing to give now though.  I said I wanted a second opinion because my trust in that doctor had just completely gone down the drain. I simply didn’t trust them.

A weeks after this meeting, the Trust issued legal proceedings[2].  They put forward their treatment plan (as outlined in the judgment), and also submitted a second opinion from the professor of urological cancer who had treated Ian Shaw. – an opinion which raised alternative treatment possibilities.

In court, Joan was acting as litigation friend for her son, with legal aid funding. Her solicitor was Kirsty Stuart of Irwin Mitchell, who instructed barrister Parishil Patel QC of 39 Essex Chambers – and it was he who spoke on behalf of Simon in court. Emma Sutton of Serjeants’ Inn acted for the Trust.  

Although she was present in court throughout the hearing, Joan chose to keep her mike and camera off.

I got a lot of support from Kirsty explaining things and during the hearing we were using WhatsApp, so I could communicate with Kirsty, and with Katie the trainee solicitor, and the barrister.  I could just send questions.”

Joan was initially quite alarmed when told there would potentially be members of the public and journalists at the hearing – but in the event, this was not a problem.

Kirsty said there might be journalists and observers and I was quite shocked at first.  I asked ‘Will people really find it interesting?’ And she said ‘Oh yes, because medical treatment for people with learning disabilities is an important public issue’. It took me a couple of hours to get my head around it, but I realised I could just pretend you weren’t there.”

She was impressed with the way the court handled the case.

“In court there were a lot of technical terms used, and I liked it that the judge kept stopping the doctors and asking them to explain.  For me it was re-hearing explanations – it was a refresher course for me, re-clarifying stuff I already knew.  But I’d only had [the second opinion expert] report for a day or two and I was still trying to figure out parts of that.  I liked the judge saying, ‘I’m not a doctor – please explain’ because I was doing that all the time in meetings, putting my hand up and saying, “hello! I’m not a doctor. Please explain what you are talking about”.  The judge didn’t take any nonsense off the doctors – or off the solicitors. She was very firm with them.”

The Court was really focussed on getting Simon some help.  Come dinner time, even though my energy levels were just sapped, I had more of a clear picture in my head about what I wanted to do.  I could see it wasn’t going to work to get him down to Barts in London. Not with Covid as well.  I’d have had to have the day centre staff down with him, and I came to the conclusion, even though I’m upset with Newcastle, that it is safer in terms of Covid, and safer for the treatment as well.”

Treatment

When the hearing finished, Simon went into hospital that afternoon, and got settled on the ward. The next day he had the first treatment and was pretty tired the whole of the next week, but the initial test results are encouraging and show that the treatment is working.  

There’s only been one hitch – with administration of one of the medications.  

After hearing evidence from three medical experts, the Court authorised use of oral (rather than IV) Etoposide (see paras. 15 and 16 of the judgment) – based in part on counsel reporting back to the court after lunch that Joan was of the view that oral administration could be managed with “relative ease”.  Joan tells me now, though:

it must be the worst tasting medicine God has ever invented. By the second dose he was whacking my hands as if to say ‘mam, I don’t want this’.  I had to fight with him again to get the third dose down, and the fourth one the poor little soul spewed it up. So, this month he’s getting the capsules”.

Final reflections 

Sometimes, says Joan, it’s necessary to involve solicitors and invoke the law in order to get the right treatment for disabled people. 

I still believe now if we hadn’t asked for his medical notes and enlisted the help of the Irwin Mitchell solicitors, they would not be treating Simon now. I still feel like shaming them was the only way to make them listen and I find that really sad that had to happen.”

Joan would like her positive experience of the Court of Protection to inspire other families to stand up for the rights of their disabled relatives.

“I was just glad I was able to get the Court to look at it.  I hope I’ve helped other people to see they can stand up for their disabled relatives if they have something wrong and possibly life-threatening.  A lot of parents out there feel you can’t challenge a doctor, because they are the experts.  I just thought, “Little man, who are you to make that decision about my son’s life?’; It’s not acceptable to let someone die just because they’ve got a learning disability. You’ve got to be that person’s voice. You have to stand up for them.  Also, I hope it’s made the Trust more aware that you don’t just give up on disabled people.  You look at other possible treatments. I hope it means that another family won’t be put through this pain and torment.”

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

[1] Kirsty Stuart has written a blog about her own experience as a mother of a child with additional needs (and the daughter of a mother with dementia) here.


[2] Kirsty Stuart points out, “even if we were all in agreement treatment would still have needed to be authorised by the court due to the level of sedation and ‘restraint’ therefore being used”.


Photo by Cassi Josh on Unsplash

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