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

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.  


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.

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

Photo by NeONBRAND on Unsplash

How not to do open justice in the Court of Appeal

By Celia Kitzinger, 10th March 2021

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 (without any party applying for this) to withhold information from you and 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

A mother speaks out about the Court of Protection

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.


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.”


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

Observing my first hearing as a Year 12 student

Evie Robson, 26th February 2021

I’m a Year 12 student (aged 16) interested in studying Law at university but I’m not able to get any work experience due to the pandemic, so observing a Court of Protection hearing was a great opportunity.  

I was able to attend because my mum, a psychologist who is interested in the Mental Capacity Act 2005 in relation to her work, has attended many online Court of Protection hearings in the past few months through the Open Justice Court of Protection Project, and so helped me to get access. 

On the morning of the court hearing, I saw a tweet about a hearing taking place that afternoon. My mum helped me to draft an email requesting access. In doing this, I mentioned that I was a sixth form student wishing to study law, and this was my reason for wanting to attend.  I also said that my mum was requesting access too, to the same hearing.

The hearing was scheduled for 2.00pm. In response to my email I received an automatic response, saying they would reply as soon as possible, and then I got an access email half an hour before the case began – giving me the details for joining by phone, as this hearing was a telephone dial-in one. When I dialled in, I had to confirm to the judge that I was at the hearing and after everyone had identified themselves, the hearing started. 

Along with completing an online introductory course to English Common Law and attending fortnightly webinars on the topic of Open Justice, listening in to a Court of Protection hearing has greatly contributed to my expanding knowledge and interest in the law. This was an especially compelling and thought-provoking experience, because witnessing the law in action made everything I have learnt over the past few months seem much more real.

The case I observed was a phone hearing (COP 1368665T), before District Judge Mullins on 17th February 2021, concerning a woman in her 80s with dementia who lives in residential social care and wishes to move back home. The court had to decide whether or not she has the capacity to make that decision and if she didn’t (everyone agreed she did not), then what other options there were for her, given that she didn’t want to stay where she was.  It seems she requires 24-hour residential care so moving back home is not a realistic option for her.  Also, the bungalow she calls ‘home’ is (according to her son-in-law) no longer habitable because the ceiling has collapsed.

This hearing was a ‘directions’ hearing to figure out what needed to be done for the final hearing which will be sometime after 10th May 2021. The judge made sure that the woman’s own views would be properly accessed and that she would be able to speak to him, and participate in the next court hearing if she wanted to. 

Although much of the hearing I attended related more to the procedural than the personal elements of the case, it was still a brilliant experience to witness life in the courts for the first time.  I noticed the hierarchy of the roles in action, with all addressing the judge with obvious respect, and I heard from the discussions just how broad the law is – so many aspects of law can be applied to different situations and those involved in the legal proceedings have a huge job to decide which sections of laws will be relevant.

It certainly felt a little overwhelming to be exposed to the expanse of legal terminology that was so easily understood by the members in the courtroom, and it was surprising to hear how easily the proceedings flowed. This particularly contrasted to mainstream media representations, particularly seen in films, of arduous, unending procedures and adversarial ways of being in court. The hearing only lasted around half an hour.  Each of the members in the courtroom agreed on every issue raised, which was quite unexpected as in my mind, when things are brought to court, there is much more conflict between the parties. 

I’m very grateful to have had this experience of seeing the law in action for the first time despite not being able to travel to court. Although the proceedings were relatively straightforward, it was particularly interesting to observe a real-life hearing, and consider what I would do in each of the positions of the people in the courtroom.

I hope to attend more Court of Protection hearings in the future to further experience how the law works in action, and to think critically about the legal arguments I come across in each case.

Evie Robson is a Year 12 student studying English Literature, French, Maths and Further Maths at Whitley Bay High School.

Photo by Paul Blenkhorn @SensoryArtHouse on Unsplash

Mentoring undergraduates to observe a Court of Protection hearing

By Jenny Kitzinger, Thursday 25th February 2021

I’ve observed Court of Protection hearings on and off for several years now – both in physical courtrooms and more recently via video-platforms.  I’ve also supported families through court cases.  But this is the first time I have mentored students to observe a hearing. 

The value of taking law students into courts is self-evident, but it’s important to realise that hearings in the Court of Protection can also be relevant for students in medicine, nursing, psychology, social work, philosophy, and a wide range of other areas, including journalism.  Indeed, providing support for trainee journalists to attend hearings might help to address the dearth of court reporters. 

Selecting a hearing

The hearing my students observed concerned life sustaining treatment for an individual in a coma.  The subsequent judgment provides a good outline of the case (see Sandwell And West Birmingham Hospitals NHS Trust v TW & Anor [2021] EWCOP 13 (12 February 2021)).

The focus of this particular hearing was perfect for the course I teach on “Birth, Marriage, Death and Liminal States”.   This is a course for second year undergraduate students studying journalism and cultural studies, often alongside sociology, law, medicine, literature or politics. The course includes a series of lectures on coma, brain-death, the vegetative and minimally conscious states, and explores end-of-life decisions using a lot of interactive online materials. My undergraduate teaching materials are adapted from a course I also teach as part of continuing professional development for staff in hospitals and neuro-rehabilitation centres, and for legal and medical practitioners (click here). Importantly, I had advance notification about the substantive decision that needed to be made in this hearing. The question was: is it in the best interests of the person at the centre of the case, who is in a coma from which he will not recover consciousness, to continue to receive life-sustaining treatment? This meant I knew the day before the hearing that it was relevant to my students. Of course, one of the problems in achieving “open justice” is there is usually no indication in court listings of what a case is about, so members of the public are unable to determine whether it is going to be a useful experience for them to observe.  It was thanks to another Open Justice Court of Protection Project contributor that I learned about this case because she happened to attend the directions hearing the day before – thanks Bonnie Venter (who blogged here).

Selecting Students

I limited the offer of mentoring to just two students in order to avoid over-burdening the court administrative process. I also wanted to avoid contributing to any sense that the court was being made into a spectator sport. Such cases may be a “teachable moment” but they are also a trauma and tragedy for a family, and as such great care is needed about using them for teaching purposes.  The two students I chose to take up this opportunity, Sophia Chew and Kim Wilkes, have written about their experiences (click here). They had already shown they were serious about studying the course and we were 3 weeks in, so they had a good foundation of some key information. They felt prepared for the emotional challenges that listening to the court hearing might involve. They also agreed to take on the extra learning required and, importantly, were flexible enough with their schedules to be able to free up a whole day if that turned out to be necessary (which it did!).

Practical information for students

I briefed them on issues such as access. I showed them how to use the Open Justice Court of Protection Project resource to email the court (the day before the hearing) to ask to observe. I also encouraged them to hang on and keep checking their emails on the day even if they did not get in at first, which turned out to be crucial, as – much to their disappointment – they were not in fact given access until sometime after the hearing had started.

Practical tips can include suggestions about how to take notes, e.g., using a time code, and always indicating who said what, and noting if a quote has been captured verbatim. Observers should also think about how to maximise their own comfort and concentration:  having a flask of tea ready, for example, or planning how to communicate with an observer-buddy via messaging during the hearing (not phone calls, which are an interruption).  Had they been attending in person I would have talked them through allowing time for airport- security-type inspections on entrance, the importance of turning phones off, and being prepared for hard seating and poor acoustics – none of which are, of course, an issue remotely.

I talked them through court rules and etiquette in advance. I ensured they knew that they needed to be alone in a quiet room without distractions, and the court does not permit audio-recording of hearings. I emphasised respect for the court process, including the fact that they might be asked to turn their cameras on to identify themselves – so no sitting in pyjamas, as one sometimes finds students do in seminars!  

I also described my experience of finding that each judge takes a somewhat different approach (and gave them my impression of Hayden J, the judge in this case).  I explained that each case varies, and that unexpected things sometimes occur.  It was important, too, to raise with them the likely nature of some of the evidence i.e., it might be upsetting, and they needed to know they could opt out at any point if they found it too difficult, and it was a good idea to think about how to take care of themselves.

Finally, I ensured they were aware of issues such as contempt of court and transparency orders and asked them NOT to tweet about it or in any other way comment publicly during the hearing, as the risk of getting something wrong was high. 

I met with them (together) after the hearing to discuss their notes and experiences, and each was invited to present to her seminar group, thus sharing the learning with their peers. 

I have also been able to adapt one of the course evaluations. This was originally designed to offer students the opportunity to mobilise their learning from the course to produce an analysis of a news story or a film, I have broadened that to include the court case and allowed Kim to submit an analysis comparing the court hearing (and the written judgment) with media reports for her first assessment; and Sophia to compare media coverage of this case with coverage of another recent treatment withdrawal case.  This provides these two students with a framework for continuing to refine what they have learned and to build on their experience of the hearing.


Mentoring undergraduate students to observe a CoP hearing was a bit of an experiment and I was glad I decided to involve two students (rather than just one) as they were able to discuss their reflections together and support each other. 

None of the risks I anticipated were realised, but I still think it was necessary to consider them, e.g.  the risk of violating the transparency order.  It is easy to forget a detail, such as, for example, not mentioning the age of a patient’s children, or whatever other aspect is prohibited in any particular injunction. Anticipating that some cases can be emotionally draining also helped the students to manage that – an important skill for anyone who might go on to work in law, health care, or social care where new colleagues are often thrown in the deep end with little support. This is relevant to journalists too: it is often new young journalists who are sent off to report from coroner’s courts with little preparation to help them with the devastating details of a case, the grieving family and the sheer tragedy of what they might hear.

Mentoring didn’t stop with the completion of the hearing. I supported the students in writing their blog too. It’s important to consider that blog posts might be read by the people directly involved in the hearing that you’re reporting on – including the judge, lawyers, the family, and in some cases, potentially, the person at the centre of the case.  An undergraduate law student, Lucy Williams (who wrote a blog here) advises: “the biggest thing is being prepared for the potential of the blog to be viewed by law firms, chambers and prospective employers e.g. my post was quoted by a barrister at a webinar the day it was posted and I definitely wasn’t expecting that!

Students also need to be ready for the potential and perils of social media. The Project routinely posts links to the blogs on Twitter and Facebook. I invited students to think about this in advance, and let them know I was available if they want to discuss anything.

Mentoring two students through this process relied on me knowing quite a bit already: I am very familiar with Court of Protection procedures, language, and the relevant case law for this type of hearing, so I could help the students understand what was going on.  It also needed a great deal of personalised attention and time from me – but this is something I am particularly happy to provide to students at the moment given the really rough time they are having with the pandemic.  In return I have been met by two students who have been at once drained, but also energised, by this opportunity. 

Sophia and Kim demonstrated an outstanding degree of commitment to learning and to communicating their experiences to others, with a high degree of emotional intelligence and intellectual engagement. The whole student cohort has benefitted from what they shared in the seminars. Other students are now even more eager to have the opportunity to observe hearings if they can, although a couple have commented it made them realise that it would be too ‘close to the bone’ for them and just too upsetting (e.g. because of the death of a grandparent). Even with a student group who had opted for a course which came with a warning that it included emotionally as well as intellectually challenging material, it has been important to offer pastoral care.  

The insight offered into how the Court of Protection operates has given all the students on my course (directly or indirectly) a strong practical sense of law-in-action and they said it has been both ‘eye-opening’ and ‘reassuring’.  They have been able to use their learning from the course in helping make sense of events in ‘the real world’ and the discussion of the court case has consolidated understanding and enlivened seminars. The presentations given by the two students who observed the hearing triggered, for example, a lot of interesting discussion about best interests, advance decisions and organ donation. 

My experience of mentoring students and integrating a court hearing into the course I was teaching was time consuming but it was a rewarding teaching experience.  Observing court hearings could be relevant to a wide variety of learners (not just those interested in law) – especially if the Court were able to indicate the nature of the decision even a day or two in advance of a hearing. It has the potential to promote legal, medical, social and ethical literacy. Engaging with how this hearing unfolded in real time has helped my students to understand the complex interface between law, medicine and lived experience.  This can only enhance their development as students, as future professionals, and as citizens and help to promote the principles of open justice. 

Jenny Kitzinger is Professor of Communications Research at the Cardiff School of Journalism, Media and Culture, and co-director (with Celia Kitzinger) of the Coma and Disorders of Consciousness Research Centre.  The online course “Culture, Coma and the Media” is available here.  She tweets @JennyKitzinger

Two journalism undergraduates observe a Court of Protection hearing

By Sophia Chew and Kimberley Wilkes, 24th February 2021

Editorial note: Two undergraduate students studying journalism at Cardiff University observed a very emotive hearing concerning withdrawal of life-sustaining treatment from a 50-year old man ( Sandwell And West Birmingham Hospitals NHS Trust v TW & Anor [2021] EWCOP 13 (12 February 2021). (Also blogged about by Bonnie Venter here and Bridge Penhale here.) They reflect on what it was like for them as novice observers, and explain what they took  away from the experience.  Professor Jenny Kitzinger , who mentored them, shares her perspective on supporting students to observe in the court here.

It was a privilege to have the opportunity to observe a Court of Protection hearing. This is the court that makes decisions about the property, financial affairs and personal welfare of people who lack capacity to make decisions for themselves (e.g. because of serious brain injury). This can include what happens to a person’s money, where they live, who they have contact with, and what medical treatment they receive.

It felt quite humbling to see all the courage and compassion, time and skill brought to trying to do the right thing for the person at the centre of this particular case: a 50 year old man (TW) who had suffered a devastating injury. The decision to be made was very serious indeed: should he be kept on the ventilator any longer or not? Should life-sustaining interventions be stopped, meaning he would die?

We are two undergraduate students at Cardiff University and were mentored to observe this hearing  by Professor Jenny Kitzinger as part of a course we are doing with her in Cardiff School of Journalism, Media and Culture.

The whole hearing was a huge education at so many levels: understanding how the court works, thinking about legal principles, engaging with ethical debates, and reflecting on what we would want for ourselves or for our own loved ones in this devastating situation.  

How it felt to be in court

The court was very impressive with its focus on really getting to know the type of person the patient was, even asking about his sense of humour and the type of things he liked doing.  

We didn’t expect that.  The hearing wasn’t all legalistic and citing case law. And it wasn’t combative like you see on the TV.  Instead there was a very clear statement from the judge that these were civil proceedings and were very different from a criminal case – there was no ‘prosecution’ and it should not be seen as “a fight” – ideas which seemed to be in the head of the patient’s brother, and the judge was keen to challenge this. The judge said the Court of Protection was trying to make a best interests decision which meant people coming together to try to work out what was right for the person at the centre of the case – combining what was known about his clinical condition with what was known about him as an individual.

Even though we were surprised by how human and humane the proceedings were, it was still intimidating being a public observer in the court.  There were so many experts who knew what they were talking about and so much jargon, we felt out of our depth at first. It was also very  intense at times, with so much emotion expressed by the patient’s wife, his brother and his three daughters. The patient’s daughters were the same age as we are, so that really hit home. 

The hearing was also completely captivating, especially as the evidence and debates unfolded in front of our eyes and made us both really reflect about what decision should be made as we heard the different arguments. That was quite compelling as a way of being made to think hard and deep. We hadn’t expected the hearing to go on for hours and hours, but neither of us moved from our chairs for the whole time.

What helped us understand the case?

There was a lot that was new to us, but the prior knowledge we did have really helped. We’d been learning about brain injury, media myths and the reporting of court cases from the course we are doing at Cardiff University with Professor Jenny Kitzinger. That meant we already knew a bit about  brain injury, the role of courts, and life-sustaining treatment debates before the hearing, so had a good grounding there.  

Jenny briefed us before the hearing about what to expect and we were in email contact with her during it too. This was invaluable at the start of the case, because there was a delay in sending us the link to get in- even though we’d emailed well in advance to ask for admission. Jenny had managed to get in, however, and she emailed notes to us about the hearing as the first hour or so unfolded.  Without that we would have been completely lost. Access to this information from the first part of the hearing from Jenny was essential, it meant that when we were finally were sent a link and able to join we already knew there had been a lot of discussion about TW’s clinical condition and understood something about the issues at stake. Without that we would have come into the hearing just as TW’s wife was saying she was sure he would get better, and we wouldn’t have understood that her view was completely at odds with all the clinical information that had just been presented. We also wouldn’t have known who the barristers were representing – so would have found it harder to follow the arguments. 

It was really helpful that, during the hearing  itself, we could email Jenny and ask questions to help our understanding .  From time to time Jenny checked how we were feeling, and told us that she was weeping herself at one point.  We were weeping too at that moment, but were supporting each other. It can be a lot to take in emotionally for anyone, but maybe particularly for us as students the same age as the daughters, and with parents the same age as the patient himself.

How watching this case prompted reflection and conversations

Watching the hearing was surreal.  One of us (Kim) felt at one point it was like watching a film:  it almost couldn’t be unedited reality because it was just too painful and raw, and unlike anything else she had ever seen in real life. We both felt a bit numb afterwards, and we needed time to process what happened. 

The experience has prompted lots of conversations. Even though one of us (Sophia) has a mother who is a first responder and an aunt who works in intensive care, neither of us had had such close discussion of these issues before and it has been really good (though still difficult) to start having these conversations with our families. The court case really brought home that it is not very helpful just to make off-the-cuff remarks like “Fight for me” (a key remark made by the patient in this case) or “If I’m ever like that shoot me” (the sort of thing we’ve heard our own family members say). One of us (Sophia) went straight downstairs and said: “Write down what you want mum, because I never, ever, want to have to contribute to making a decision like that for you”.

Watching this hearing really showed how difficult it can be for families if there is nothing in writing about what the person would want. Without written information,  families might not be able to make a decision that is in the best interests of the patient either because they simply don’t know what the person would want, or (like the wife in this case)  because they are in shock and panic, and unable to take in medical information.  After all the clinical information had been presented, the wife said, “I know my husband, he is going to recover”. And we felt, “what about all the clinical experts who have given evidence, has she not heard what has been discussed for the last hour?” So before the hearing we might have believed that “next of kin” should have the right to make decisions about a loved one on a ventilator with serious brain injury – but actually we can see the problems that can arise now.

Public discussion and media coverage

We are both studying journalism as part of our degrees, so it was interesting to reflect on the media reporting side of things too, and quite tempting to think about how we would report it ourselves. We were well aware, however, of how little we knew about issues such as diagnosis.  The more we’ve learnt about “coma” on our university course, the more we realise our own misconceptions!  We could see, for example, how complex it was to get the terminology right about the patient’s diagnosis: at one point even the judge and one of the barristers disagreed about the right word to use to describe the patient’s condition!

We had  been briefed by Jenny about the risks of unintentionally tweeting identifying information or violating the Transparency Order. Tempting as it might have been to tweet (and we’ve seen the sort of live tweeting Jenny has done from court here), we knew we shouldn’t do this. Instead we drafted a private record of what we would consider writing up if we were working journalists, which is one of the tasks Jenny suggested we try. It was really helpful seeing the questions a journalist who was at the hearing asked (e.g. querying whether the patient’s age could be stated in his reporting of the case) and it was good to understand how a Transparency Order works.

It was quite shocking seeing a BBC  media report  headline the next day: “Sisters lose court fight over ‘goodbye hug’ for brain damaged father”.  As we had anticipated, the focus was primarily on just one aspect of the case: the patient’s daughters’ longing to at least be able to see their father in person and hold his hand before he died. That focus meant there was a lot that was left out. 

We were surprised how reduced the short news report was. It felt quite bland, detached and impersonal  compared to the  drama, empathy and acutely personal discussion we experienced in the hearing.  It didn’t communicate to readers even a fraction of what we had learned from the hearing or what it might be useful for the public to know as a result  (e.g. information about Advance Decisions to refuse treatment here).  

It is striking  that the headline of the BBC piece reproduces the narrative of “fight” which was explicitly challenged by the judge.  We suspect this headine maybe didn’t reflect what the three daughters  felt by the end of the hearing. Even if they came into court feeling it was a “battle”, we really hope they felt heard and represented by the end and that they had been fully involved in the process of trying to do what was right for their dad. The judge really tried to ensure their point of view had a full airing.  He got the doctors to spell out why it might not be right for their dad to be kept alive long enough  for them to visit.  

It was very moving at the end when one of the girls thanked the judge for the time he took to listen to them and for “being our voice”. That really isn’t what either of us expected from the judge – but that is exactly what he seemed to be doing at one point.  This very much challenged our preconceptions about how court hearings might be run and has made us reflect on how judges are sometimes stereotyped as remote and rather out of touch. This certainly wasn’t how this judge came across.

Looking at the BBC report we just feel there was so much more in the court hearing itself that could make for more original, compelling and informative reporting – but maybe some of that would have to be in a different format than a news report, perhaps a longer form article, a documentary or even a play. Or, of course, a blog!  

Neither of us is quite sure what we want to do after completing our undergraduate degree,  but we will never forget this patient and his family, and will always remember the hearing – taking forward what we learned from it both in our family lives and in our professional careers. 

Sophia Chew and Kimberley Wilkes are both second year undergraduate students at Cardiff University. Sophia is studying Journalism and Communications. Kimberley is studying English Literature with Media and Journalism: she tweets @KimberleyW812

Photo by Mathew Schwartz on Unsplash

Ethical complexity in a life-sustaining treatment case

By Bonnie Venter, 23rd February 2021

Editorial Notes: (1) A tweet thread about the hearing is available here. (2) The judgment has been published here.  (3) A different perspective on the same hearing (by Bridget Penhale) has been published here.

There are moments in life that cause a monumental shift in who we used to be and who we are today. I know from personal experience, that it’s a life-altering event when a daughter hears about her dad’s untimely death. There is a split-second, a moment, where the world goes quiet, and you realise that life will never be the same again. In effect, a large part of who you were before this tragic event passes with your dad. 

Observing this hearing, I bore witness to how the lives of three courageous young women in Canada were transformed when the decision was made that it was not in their father’s best interests to continue life-sustaining treatment. 

The hearing (COP 13712297 Re: TW before Hayden J) was split over two days – about an hour and a half on Wednesday 10th February 2021, and then a full day on Friday  12th February 2021 – so about seven hours in total. 

Background summary of the case (Wednesday)

When I logged in on Wednesday, my MS Teams screen was dominated by the legal representatives and judge: Nageena Khalique QC (for the applicant Trust, who gave an opening summary),  Bridget Dolan QC (for TW, via the Official Solicitor) and Ian Brownhill (for TW’s brother, the second respondent – on behalf of the whole family), and of course Mr Justice Hayden presiding over the matter. 

TW is a 50-year-old man who was admitted to hospital following a stroke on 17th December 2020.  On 29thDecember 2020, he suddenly deteriorated and was admitted to the Intensive Care Unit.  He was intubated and then given a percutaneous tracheostomy to insert a breathing tube through his neck. He remains reliant on ongoing mechanical ventilation and has not improved – may in fact have deteriorated – in the six weeks since then. He is in a coma.  The question before the court (as in well-known cases like BlandBurke and more recently Aintree) is: is it in TW’s best interests to continue life-sustaining treatment?

The Trust’s position is that TW’s neurological prognosis is very poor and that continued respiratory support and/or treatment (including CPR and ICU interventions) are invasive and burdensome.  The Trust believes that it is not in TW’s best interest to continue life-sustaining treatment and they have submitted a detailed staged plan for withdrawing it, and administering palliative care.

The family[1] opposes the Trust’s application for withdrawal of life-sustaining treatment.  They believe that TW is aware when the family speak to him and that he is responsive to their voices; and they want to know whether it is impossible – as opposed to highly improbable – that he will recover. If it is impossible the family will accept withdrawal of treatment, but if it is merely improbable, they feel dutybound to ‘fight’ for him. This position comes from the unified voice of his brother and wife (the latter not a party in the proceedings, but present as a witness). Mr Justice Hayden reiterates the fact that TW is at the pinnacle of the case: ‘the case needs to be driven by the medical, the ethical and the welfare interests of P’.  

His powerful statement a few minutes before the end of the hearing (addressed to the family members present in court) remains in the back of my mind for the rest of the day:

 ‘It is not helpful to think of this in terms of fighting. Fighting is not what this is about – it is about care, about love and about identifying best interests and working cooperatively to advance them. Fighting for human dignity is just as important as fighting for survival.’ 

Lasting Impressions: the value of life, dignity, and organ donor registration (Friday)

My observation on Friday starts off with the obstacle of gaining access to the hearing. It took repeated emails to the Royal Courts of Justice email address (no reply), a few DMs to Celia Kitzinger, and her intervention with emails to the judge’s clerk and to counsel.  I felt lucky to get in (I heard afterwards that many others were denied access) but it feels as though gaining access to a hearing listed as ‘in open court’ really shouldn’t be this difficult, and I was disappointed to learn that I’d missed the first clinician giving evidence and being cross-examined. The judge was also distracted and annoyed by late admissions to court.

I will not go over the legal and clinical facts of the case in this blog: the approved judgment sets these out clearly and the blog post by Bridget Penhale (here) also covers these.  Instead, I would like to share the aspects of the case that made a lasting impression on me.  These are: 

(1) What makes life worth living? 

(2) The question of ‘dignity’; and 

(3) The issue of TW’s organ donor registration.

  1. What makes life worth living?

For most of us, there is some point in life where we ask the question: what makes life worth living? For people like me who are involved in medico-legal work, this question is often one that might be a central focus of our work. I am well aware that I have personally spent countless hours, bent over literature, searching for the answer in ethics, philosophy and sometimes even novels. Yet, none of these readings provided me with the insights I gained by watching this hearing. 

This question was first touched on by Prof D, a Professor of Intensive Care Medicine.  He said that TW would:

‘… never return to a state of being where he has some control over his circumstances, where he’s aware of his environment, and would be able to interact with others, be able to direct what would happen to himself, be able to participate in those things that make life worth living – family, friends, joy, the future’

Prof D answered counsel’s questions about TW’s clinical situation and made it very clear that in his view it was ‘impossible’ for TW to recover.   The judge asked: 

Just so that the family are clear what we are talking about….  If, for the sake of argument, it were possible for there to be some improvement in his level of awareness, that would carry disadvantages as well as possibly perceived advantages, and I think it would be helpful to engage in that hypothesis.”

Prof D restated:

 ‘he mightalthough it is highly improbable, achieve a level of awareness where he’d be conscious of the fact that breathing was difficult, that moving was difficult – if not impossible – , where he knew that he couldn’t communicate, he couldn’t participate, he couldn’t give his brothers a hug or show love to his daughters. I think it would be a life of considerable distress…’

For this medical expert, it is our ability to interact with others in a meaningful way that makes life worth living. Throughout the hearing, from different perspectives and perhaps phrased in different ways,  it was often reaffirmed that hugs, love, and the ability to spend time with our loved ones (especially watching football!) were the things that made life worth living for TW. 

Whilst I was listening to the different views expressed on the value of life, I could not help but  think about my own life and ask myself, ‘what really makes life worth living for me?’  I confronted this question recently when completing my Advance Decision with the help of the Compassion in Dying website.  At the end of the form, there is a space provided to explain your reasons for wanting to refuse some treatment under some circumstances.  I instinctively started to write about the significant value that I attach to living an autonomous and independent lifestyle, that I find joy in being physically active and most importantly that my ability to engage with ideas, think them through and have debates with my friends and colleagues constitutes a large part of who I am.   I know that I would not be content to live in a state where my brain was not fully functioning. I live for teaching, learning and research – take away these parts of my life and you will be taking away a major part of me.  Obviously, I appreciate that this is not everyone’s view: some of my closest friends are perfect examples of how one’s life can be made worthwhile and enriched by having a loving marriage, being a parent or simply having the freedom to be a wanderer.  But this is me!

I wondered whether there were certain states of being that I could learn to accept given the necessary time to adjust? I thought about my late father and I know that his response would have been similar to those mentioned above. Love and hugs are what makes life worth living – he was a firm believer that a hug could fix absolutely any problem (to be fair, his hugs probably could)!  I relate to my dad on more than one level, but this is one key point where we differ. Hugs and being loved are definitely added niceties to my life but I would struggle to adjust to a life where I am unable to engage with the things that make me tick – be that critically engaging with a medico-legal topic, running, singing along to a favourite song, or painting. 

One of the treating clinicians said of TW: ‘We’re keeping his body alive, but not him”. Would I personally want to receive life-sustaining treatment if I were in a similar situation as TW? The answer is a firm no. I’m glad that, prompted by my observation of an earlier COP hearing (which I blogged about here), I’ve now made my own Advance Decision, specifying my own position on what makes life worth living for me.  Without documents like these, the Court of Protection is faced with a difficult task when it has to evaluate whether – given what kind of life it would permit – a person would want to receive life-sustaining treatment.  It seems safe to say that there is no one-size-fits-all approach. Each person’s personality, values, beliefs as well as medical prognosis presents a new challenge for the Court. 

2. The question of ‘dignity’

The question of ‘dignity’ arose as a response to a request from TW’s daughters. It was difficult to see how exhausted and grief-stricken these young women are: I admired their bravery.  They asked whether (given that he isn’t – as far as anyone can tell – able to feel pain) doctors would continue to provide life-sustaining treatment for another three weeks, to give the daughters time to fly from Canada to England, quarantine for 10 days, get tested for covid, and get to their father’s bedside for a final goodbye.  One said:

What is the harm in keeping him on a little bit longer? So we can get the chance to see him, have that face-to-face connection even if it’s for the last time. I just think he deserves that time. He would want us to have that opportunity…’

Another daughter pointed out: ‘My dad would never want to leave a world where his daughters couldn’t hold him or be with him even if it is for one last time’.

After their statements, there was a moment of silence in the court. A mere glimpse at the screen showed how everyone’s hearts were breaking for these young women’s loss. Mr Justice Hayden, clearly moved by their statements, said: “Let’s take a couple of minutes to reflect. Let’s allow everyone to catch their breath for a few minutes”: there was a 10-minute adjournment.

On return, the question of ‘dignity’ became explicit.  Mr Justice Hayden summarised what the daughters had said and its implications: 

This is what their Dad would have wanted for them – to have been able to say a physical good-bye. I know it’s not been possible for many people in the world to be able do that.  But I think it is important to inquire into whether it’s possible here, having regard to the objective:  to maintain TW’s dignity in that process’. 

What I saw happening here was a concern to address the full of ‘best interests’, which does not refer only to what the person wants for themselves, but also to what they want for others.  When I’ve discussed the definition of ‘best interests’ with Medical Law students, there’s often a concern about the lack of a firm definition and some questions about whether the concept of ‘best interests’ is too loose and woolly for the courts to apply it easily. From what happened at this point in the hearing, I realised the importance of allowing certain areas of the law to be flexible and adaptable.  

The question of what TW would want not only for himself, but also for his daughters, was now set alongside the question of his ‘dignity’ in the best interests assessment. 

One of the treating clinicians was asked to address the daughters’ request: could TW be given life-sustaining treatment for another 3 weeks because his daughters’ wishes to be physically present at the bedside would be an important consideration for him, and should therefore feature in any best interests decision about him?

The doctor was in a difficult position. It cannot be easy to have to explain in precise detail to the family what TW’s body is being put through, which he labelled as ‘undignified’ (the vomiting and bleeding caused by artificial feeding etc).  Plus, he said, “the risk of him passing away over the next few weeks is high, even if we were to continue treatment”. To keep him alive might require CPR, which the doctors were not willing to give.  Mr Justice Hayden put the daughters’ case as strongly as he could (not least because they were without legal representation in court, the view of TW’s brother – represented by Ian Brownhill – being rather different).  

They accept there will not be recovery. They appreciate that in medical terms their father’s life has become futile – without medical hope.  But their case is that an evaluation of his best interests requires sometimes achieving that which he would have wanted even if that is at the compromise of his dignity objectively assessed.  So it’s not a situation where CPR is being canvassed purely because the girls want to say goodbye.  They believe that their father would want them to be able to say goodbye.  Attempted CPR might be contrary to his medical interests at this stage. But best interests is a wider canvas. It’s about who he was, what mattered to him, the code by which he lived his life.  … One thing is manifest: he is the centre of their world and they are the centre of his world too.  If I put best interests in that wider context, beyond the merely medical, even at the compromise of his dignity, is CPR a viable possibility?  I put their case in the best way I can because I want them to have that case put.” (Hayden J)

Another treating clinician who had left the hearing, then reappeared in court, and Mr Justice Hayden filled him in on developments and pursued with him the idea that “it would be a facet of his human dignity to go in the circumstances that he would want to, with his daughters around him”.  Acknowledging that it may not be practically achievable, the judge said:

 “.. but the question is: is it right, ethical, and in Mr TW’s best interests to see if it could be achieved? […] Human dignity lingers beyond consciousness. It’s in the love of a family and the care and professionalism of doctors and nurses.  The question is whether it’s worth an attempt at this because we give human dignity a greater weight than we would in other circumstances.”

The consultant who had re-entered the hearing said he would “struggle” with giving that one aspect of TW’s ‘dignity’ (his wish to have his daughters at his deathbed) such great weight in the context of a best interests decision:

The way he is being dealt with at the moment is as sensitively and as best we can. But I don’t think it is particularly dignified and with each day this goes on it becomes more undignified. In a sense what I’d say to his daughters is “remember your dad the way he was”’. 

The recuring theme of ‘dignity’ intrigued me during this hearing. My legal training took place within a different jurisdiction that places a strong focus on human dignity as a constitutional right. The South African Bill of Rights explicitly states that ‘everyone has an inherent dignity and the right to have their dignity respected and protected.’ Human dignity, alongside equality, and freedom also forms part of the cornerstone upon which South Africa’s democracy was founded. Due to this, I’ve been conditioned to think of dignity as a right as opposed to a value and this has perhaps allowed me to shy away from thinking about dignity in a non-intrinsic manner.

Listening to Hayden J, I began to reassess the meaning of dignity, especially within the framing of a dignified deathAfter the hearing, I sought out (via Twitter) some help in thinking through this issue and was fortunate enough to be able to talk for an hour with Dr. Peta Coulson-Smith (@DrPetaCS), a Paediatric Registrar who also teaches Clinical Ethics and Law. She helped me to realise the importance of conserving dignity – and the reality of what that means – both in palliative care and when providing life-sustaining treatment. 

As a non-clinician listening to the clinical evidence during the hearing, I only picked up on the basics – artificial nutrition and hydration, ventilation, CPR and dialysis. In end-of-life cases, these forms of treatment are often painted as being undignified and that is understandable since the treatment is futile and will only add to the patient’s suffering with every passing day. But these treatments are not inherently undignified, if they are chosen, or accepted or actively requested by a person for whom these treatments offer hope of life, or a better quality of life.  As Hayden J said, “there are people on ventilators out and about in the community, but these are often people who are in charge of themselves”.  For many people, ‘dignity’ is about ensuring that they receive treatment at least as much as having the right to refuse it.  

Drawing on personal experience, I have a friend who is receiving dialysis while she waits for a kidney to become available for transplantation. Another friend had a PEG for almost a year to help her to gain weight for her lung transplant. Do they perceive these treatments as an affront to their dignity? The short answer is no. The reason being that they are in a position where they have ‘control’ over the provision of the treatments – they have the final say in accepting or refusing it. To them being treated in a dignified way is strongly attached to their personal sense of agency and autonomy. 

I suspect that the significance of ‘dignity’ is different for different people, depending on aspects of their lives that they cherish most. Dignity is a term that I hear being used in an under-theorised way in the medico-legal environment, when in fact, as this court hearing illustrates, its meaning is contested. I would love to see more engagement with ‘dignity’ to developer broader understandings of what it means to each of us and the meaning it ought to have within a judicial setting.  

3. TW’s Organ Donor Registration 

From the first time that I heard about organ and tissue donation, I knew I wanted to be a donor – it seemed the obvious thing for me to do; what would I do with my organs after death anyway? Perhaps my attitude towards organ donation was somewhat influenced by the feeling of immortality that a teenager possesses. Either way, almost two decades later and numerous experiences of witnessing the improvement of the quality of life of recipients post-transplant, my decision to be an organ donor remains unchanged. Therefore, I was rather intrigued by the fact that the act of registering as an organ donor was a feature in this hearing – although that is not, as it turns out, evident from reading the approved judgment[2].

Prof D was the first to refer to TW’s organ donor registration, ‘This is a man that is on the organ donation register. He has the commitment to want to help other people in the event of his death…’

TW registered as an organ donor on the 25th of April 2019, at a time when England was still operating under an opt-in system. This simply means that TW had to actively take the necessary steps to indicate his wish to become a donor:  this is usually done by means of registering with the NHS. (This was before the current system of deemed consent that came into force in May 2020 in England (Wales made this shift in 2015): with deemed consent, all competent adults are potential organ donors when they die, unless they specifically registered their wish not to be.

For Prof D, the organ donor card was “a glimpse into his personality. This is a man who cares, he cares for others.’ His daughters added to Prof D’s inference shortly after when they were asked whether they were surprised that he’d registered as an organ donor (since both his wife and his brother had expressed great surprise about this, saying that it was against their religion).  One simply said ‘…he’s a kind person, he was selfless in those kind of ways. That is what he would have wanted. I cannot be a hundred percent sure but that’s my opinion’. 

The fact that different members of the family had different views about whether or not TW would have wanted to be an organ donor is a familiar occurrence in organ donation settings.  Specialist nurses (transplant co-ordinators) and clinicians are often in a situation where they have to navigate complex family dynamics. The family of the organ donor plays an extremely important part in the donation process. Even now under the new deemed consent system, families are consulted and asked to support donation (unless it has been actively refused). For myself, I have registered as a donor (here)  to ensure than nobody is in any doubt about my wishes.  (You can alternatively register NOT to donate on the same site.)  As with advance decisions to refuse treatment, which give people clarity about your wishes for medical treatment at the end of life, so too with organ donation.  I cannot emphasise strongly enough the importance of making your wishes clear in advance. Nageena Khalique QC said it best: ‘There cannot be any clearer indication of TW’s wishes and feelings in relation to organ donation than the form he completed himself’.

Final Reflections

As an academic, I can summarise the ethical and legal lessons from this case. As a human being, I am speechless at having witnessed the remarkable compassion, care and solidarity shown by those involved, in pursuit of their collective goal of acting in TW’s best interests.

Earlier this week, the approved judgment was published.  Reading it, the first thought that came to mind was how much it differed from my experience of observing the hearing. Of course, the facts and the law were the same. But, if I had not been in the (virtual) courtroom, watching the case unfold in real time, I would not have had so much appreciation for the sensitive approach that was used in reaching this decision and the fact that all possible options were fully explored. Nor would I be aware of all the additional detail that is gained from hearing medical experts and family members address the court.  

Like most academics, I have my critical thinking cap on when I read published judgments.   I tend to react with a cry of ‘I don’t agree with this at all!’ and set out a plan to write a case commentary.  Yet, my take-home message from observing this hearing is to perhaps follow a more cautious approach in future, and to bear in mind that there are likely to be details that I might not be privy to and aspects of human relationships and ethical complexity that can’t be summarised in a written judgment.

Bonnie Venter is a PhD candidate and Senior Associate Teacher in Medical Law at the University of Bristol Law School. Her PhD research is based on a legal and regulatory evaluation of the living organ donation pathway, with a specific focus on the psychosocial assessment of the living organ and tissue donor. She tweets @TheOrganOgress

[1] At the beginning of the hearing, it seemed that family members were united in believing that TW should continue to receive life-sustaining treatment, and that Ian Brownhill, though formally instructed by TW’s brother, thus represented them all.  As TW’s wife said, “we’re all in this together”.  As the hearing unfolded it became clear that TW’s daughters (who were hearing the medical evidence for the first time) took a different position from his brother, and so found themselves unrepresented. So too did TW’s wife, at the end of the hearing when she wanted to appeal the judgment but TW’s brother (who was instructing Ian Brownhill) did not.  

[2] Note:  There was absolutely no suggestion or any connection whatsoever between the Trust application for treatment withdrawal and the fact that TW was a registered organ donor. Prof D specifically said in his statement that unfortunately, TW could not be a donor in ‘these circumstances’ and also emphasised that ‘he does not wish to present this [organ donor card] from this point of view’.  This should not need saying, but it has been pointed out to me that another case in the COP this year in which the Trust sought to (and did) withdraw life-sustaining treatment attracted negative publicity with claims of NHS organ procurement (with absolutely no evidence whatsoever!).

Photo by Mitsuo Komoriya on Unsplash

Treatment withdrawal in the ICU when clinicians and family disagree

By Bridget Penhale, 22nd February 2021

Editorial note: The judgment has been published here.

When I logged into this hearing (COP 13712297, before Mr Justice Hayden) on the afternoon of Wednesday 10thFebruary 2021, I discovered it had been listed as an urgent matter relating to medical decisions about TW, a 50-year-old man with a catastrophic brain injury. 

TW was admitted to hospital in mid-December 2020 following a severe stroke leading to a brain stem infarct.  He then had another severe stroke in late December 2020, since when he has been in a coma.  He is maintained by mechanical ventilation via a tracheostomy tube.   There is no question for any of the parties but that TW lacks capacity to make his own treatment decisions. The question before the court was whether it was in TW’s best interests to continue to receive life-sustaining treatment.  

Although the fundamental starting point in English law is a strong presumption that it is in a person’s best interests to stay alive, the principle is not absolute.   “Important as the sanctity of life is, it may have to take second place to human dignity” (Munby J in R (Burke) v GMC (OS intervening) [2005] QB 424 at [213(o)].

The key case law on this issue is Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67 at [22]:

“ … the focus is on whether it is in the patient’s best interests to give the treatment, rather than on whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course that they have acted reasonably and without negligence) the clinical team will not be in breach of any duty towards the patient if they withhold or withdraw it.”

The applicant Trust (Sandwell and West Birmingham Hospitals NHS Trust) was represented by Nageena Khalique QC of Serjeants’ Inn Chambers.  The view of the clinical team and the independent experts was that TW is extremely unlikely to make any significant recovery from his neurological injury and that life-sustaining treatment (in particular the ventilator, and CPR should it be needed) was not in TW’s best interests and should be withdrawn (or withheld).  The Trust’s proposal was that palliative care should begin immediately and withdrawal from ventilatory support follow shortly thereafter.

Family members, with TW’s brother as the family spokesperson, opposed withdrawal of life-sustaining treatment. Counsel for TW’s brother was Ian Brownhill of 39 Essex Chambers. 

Counsel for TW, via the Official Solicitor, was Bridget Dolan QC, also of Serjeants’ Inn Chambers

The hearing was listed as a directions hearing, i.e. to determine what else needed to be done (and by whom, and to what schedule) in order to make a final determination as to whether or not continuing treatment was in TW’s best interests.  In fact, the hearing – split over two days – resulted in a decision from Mr Justice Hayden:

“I am clear that the continuation of ventilatory support and likely invasive treatment can no longer be reconciled with TW’s best interests. In those circumstances I must grant the declaration sought by the Trust.” (From published judgment, here)

The hearing

On Wednesday, it was determined that TW’s wife, and also his daughters from a previous marriage, wanted to provide evidence. As they were in another country (Canada) it was agreed as appropriate to adjourn the hearing, part-heard, for continuation on the Friday.  This postponement would also allow for the experts involved to watch video-clips that the family had made of TW in hospital so that they could comment on the family’s claims that TW was responsive to them, despite having been diagnosed as comatose.

Once the hearing restarted on Friday, it soon became obvious that it was going to take the whole day. In total the hearing took more than seven hours, and I managed to re-arrange some afternoon appointments so I could hear the whole thing.  Even though the hearing was exhausting for all concerned (more later), I am pleased that I did so.

Medical evidence

The hearing began with evidence from medical experts about TW’s condition. We were provided with a detailed chronology from TW’s first attendance at the hospital Emergency Dept on 12th December 2020, with a severe headache, blurred vision and non-specific malaise, following which he was discharged. He was re-admitted to the Emergency Department five days later on 17th December 2020, with signs of his first stroke – some loss of consciousness, slight left-sided weakness and agitation. A detailed MRI scan some 6 days later revealed multiple infarcts (severe damage and cell death) in the area known as the hindbrain, indicating that TW had had a major stroke. A further very severe stroke, described as a ‘catastrophic brain injury’, occurred on 29th December 2020 and since that time TW has been ‘profoundly unconscious’ in a deep coma and is being cared for, on full life-support, in the Intensive Care unit of the hospital. 

Although the way that the experts provided their evidence was entirely professional, it was clear that they were emotionally affected by the situation. One of the treating consultants choked up during his evidence, when talking about the current situation created by the pandemic, which means that family members are not able to visit relatives (particularly those in intensive care). 

If this was at a normal time, I would be in the coffee room with the relatives saying, ‘I’m very sorry, but that is the way it is’. This is tragic for the family. It’s happening at a cruel and tragic time that is no-one’s fault.[1]

TW’s family had filmed some video clips on their phones which they thought showed that he was responsive to their voices as his body had moved when they spoke to him. These clips had been shown to the doctors who were asked to comment on what they could see on the videos. All the medical experts said that TW’s movements were completely involuntary and not due to any conscious response on his part. 

The video shows movement but in an involuntary way and not due to any particular stimulus or command. I can understand that the movement appears to be in response to the family…. I can understand the pain of the family and understand why they feel hope where none exists.

 It’s just not biologically possible for him to recover given the severity of the insult to his brain stem. […] Sadly, the die was cast on 29th December.  We were set on an inevitable path. He’s not recovered and would appear to have deteriorated.”  

Counsel for the Trust asked the independent expert, a Professor of Intensive Care Medicine, about TW’s movements, clearly visible on the video made available to him the previous day, when TW’s brother was speaking to him: “Does that change your view?”, he was asked.   “It reinforces my view”, he said.  “Those were spinal reflexes, not conscious movements.  Not at all.  They were not in response to his brother’s voice. They were automatic reflex movements that indicate how severe the brain injury is.”

The detailed evidence about TW’s serious and enduring medical condition was difficult for observers to hear, so I can only imagine how hard it must have been for family members to listen to and process.

Family evidence

Mr Justice Hayden asked for TW’s wife to be called as first witness, in advance of hearing from TW’s brother who was second respondent in the case.

TW’s wife, who had previously emailed her view that treatment should not be withdrawn, was first asked whether anything she’d heard from the doctors in court so far had changed her view. “No”,  she replied.  She said, TW had told her: “if anything like this happened to him, there’s no which way that anyone’s going to take me off a ventilator”.  In response to a question about whether she would still hold that view if he never recovered enough to express love for his family, she said, “I think that he can and he will.”  Her fixed view was, “we are going to fight this to the end”. 

TW’s brother’s views were also unchanged by the medical evidence presented to the court.   He was convinced that in the autumn of 2020 (when covid infection and death rates were high), TW had known that something bad was about to happen to him:

I think my brother knew something was going on – it was a bit weird, but I think he knew something was wrong with him, but he didn’t know what.  He was scared this would happen.  He said, ‘if anything ever happens to me, you guys fight for me, because I’d fight for you’.  With Covid we knew people going into hospital and not coming out.  I am representing his voice. He wanted us to fight to the end for him.”

To me, it appeared likely that the conversations reported by the brother were more related to TW’s fears relating to Covid-19 as the brother had said that they (he and TW) had had many discussions about Covid; indeed, there was no evidence that TW had ever specifically addressed the question of what he wanted to happen if he was catastrophically brain damaged and unconscious (although his brother believed that the ‘fight for me’ comment was intended to extend to this scenario too).  

Both TW’s wife and his brother painted a picture of him as a home-loving family man, who enjoyed cooking, Chinese and Indian food, football (a Manchester United fan like the judge!) and watching films. His wife described him as “my best friend and my soulmate”.  But somehow their comments did not seem to fully convey TW as a fully rounded individual at a more personal level. The judge later stated that he was of a view that neither had been “entirely candid” in their answers to his questions (for example, despite the evidence of the medical records, his wife denied that TW had drunk alcohol to excess), but he acknowledged that it was understandable that they would wish to present TW in the best possible light.

After a much-needed lunch break, we heard evidence from TW’s daughters. These 3 young women were in the same room, together with their mother (who was offering support from the side), and their evidence was both compelling and electrifying. The emotional nature of what they had to say and the emotional toll that this had on them was instantly apparent to everyone – and the impact of this on those involved in the hearing was immediate. I was glad that I wept behind a computer screen rather than in open court. 

The daughters took a different view from the family members who had spoken before lunch. They understood the science and what that meant for their father and did not ultimately oppose treatment withdrawal.  But they wanted to be able to see him, to say ‘Goodbye’ – to hold his hand and hug him before he died.

This is an excruciatingly painful time for me and my family”, said the eldest of the three, reading out a prepared statement.  She described trying to make arrangements to come to England from Canada, and how she was stymied by flight (non-)availability and quarantine restrictions.  

My heart has been shattered in ways unimaginable.  All I’m asking is for you to let me see my Dad in person once more.  Please allow my dad to stay on the ventilator until we can get to him.  I’m begging you from the bottom of my heart. I’ve never wanted anything more in my life.”

The hearing of course was not about them, or other family members and what they wanted to happen. It was about what was in TW’s best interests, as the judge reminded us at several points. However, another of the daughters said that her view was that her father would want his daughters to be able to see him before he died, and this had an immediate impact on the court. The question: ‘What would P want (or have wanted) for his daughters in this situation?’ was clearly relevant to the hearing and a factor to be considered in making a best interests decision. The daughters were asking for time to get to England and spend some final moments with their father before he died, in part because they believed that this is what he would have wanted, for himself, and for them. The judge switched tack straight-away, and started to explore the possibility of a 3-week delay in withdrawal of TW’s life-sustaining treatment in order to allow the daughters one last visit. 

Sadly, it became clear that the precariousness and instability of TW’s medical condition was such that the clinicians considered TW was at significant risk of a further cardiac arrest/heart attack in the near future.  He’d already had CPR twice since his collapse in December, and the clinicians made clear that they would not be willing to do CPR again if his heart stopped.  Although it was possible that TW might survive for three weeks, with ongoing life-sustaining treatment, the survival of his body would come at the cost of his human dignity. He would need to be subject to ongoing medical interventions – not just ventilation but also suction of his trachea to remove secretions, administration of drugs, food and fluids, a urinary catheter, cleaning after faecal incontinence, and passive movement and repositioning to avoid or minimise the risk of pressure ulcers and contracture.  He has had intermittent nosebleeds due to irritation from the nasogastric tube. He’s been constipated and regurgitating feed. During periods of involuntary movement and seizure activity, he has bitten his mouth and tongue causing bleeding. He’s had a lung infection and a urinary tract infection (both treated with antibiotics) and these could happen again – as could a cardiac arrest. 

Judgment and its aftermath

After brief closing statements from counsel for all the parties, Hayden J delivered an ex tempore judgment approving the application (from the Trust) that life-sustaining treatment should be withdrawn, that TW be provided with palliative care and he be allowed to die. In relation to a three-week extension of treatment he said: 

Were I to sustain Mr TW’s present situation for a three-week period to enable his daughters to come over, I would be compromising his dignity at the end of life. My obligation in his best interests is to protect that.

The oral judgment took 50 minutes to deliver, reflecting the evident difficulty and emotional nature (and consequences) of the decision. It was clear from Hayden J’s delivery that the case had a powerful impact on him; there were several points where he paused and appeared to be searching for the right words that would convey his understanding and compassion for family members. At a few points it seemed that he struggled with the undoubted impact that his words would have. 

Following the final words of the ex tempore judgment, there was some further discussion about when the decision would take effect. The daughters requested that ventilatory support should not be withdrawn on Valentine’s Day: 

We appreciate the time you took to hear us out and to be a voice for us. But please, could it not happen on Valentine’s Day – any day except Sunday, please. To associate a day of love with a day of loss would be too much.” (Oldest daughter)

It was agreed by the Trust that withdrawal of ventilation would take place the day after Valentine’s Day.  

There then followed a brief discussion about the possibility of an appeal of the decision to the Court of Appeal. Although TW’s brother indicated that he would not launch an appeal, TW’s wife said that she did want to, and the judge told her that she would need to apply as soon as possible (preferably later that day) to be joined as a party and seek leave to appeal the judgment. As far as I know there was not in fact any appeal. In closing, the judge acknowledged that everyone was “emotionally exhausted” and said that we would all remember this case for a long time. 

As usual, I was very impressed with the way that Mr Justice Hayden managed the hearing.  He was rigorous, perceptive and empathetic.  He is able to relate to diverse individuals with humanity and compassion. His clear focus on TW and what was in his best interests, even in this most important and challenging of decisions was very clearly displayed.  Despite the sad outcome, this hearing stands as an example of the Court of Protection at its best. 

Bridget Penhale is Reader Emerita at the University of East Anglia, Norwich and also an independent consultant on elder abuse, adult safeguarding and adult social care. She has contributed to several previous blog posts for this Project including one reporting on another of Mr Justice Hayden’s judgments, under the title “Who is to blame if the COVID-19 vaccination causes harm to P”.  She tweets @bpenhale

[1] Thank you to Celia Kitzinger for this and several other of the longer quotations from the hearing – of which she had many more than I was able to record.   Since we are not allowed to audio-record hearings, these are unlikely to be word-perfect, but are as close to verbatim as Celia was able to make them.

Photo by Silvestri Matteo on Unsplash

<span>%d</span> bloggers like this: