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.

Reflections 

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

The Prologue to a Life Story

By Rebecca Poz, 18th February 2021

I have attended court before, both in person pre-Covid, and remotely in 2020. I have attended Magistrate’s Court, Crown Courts, the Court of Protection and the High Court, as well as Fitness to Practice Hearings, but I have only ever attended as an Expert Witness, and once as a juror. I wouldn’t exactly say that I have enjoyed attending court as an Expert Witness, but I have felt privileged to be able to see a piece of work through to its completion and bear witness to a chapter in a person’s life at a point at which their very humanity and right to self-determination are under scrutiny. In those moments when the pressure has been at its greatest and I have questioned my own decision-making skills in agreeing to stand as an Expert Witness, I have been able to revert to the realisation that this isn’t about me, it’s about P. That any one of us could one day be P. And if I were P I would want someone to provide the necessary professional information to help the judge in coming to a decision. From what I have experienced, the Court of Protection process holds P right at the centre.

As hearings moved to remote platforms, this has allowed an opportunity to observe a wider range of cases and practices. I felt this could provide me with a different perspective; almost the way that attending a wedding as a guest is different from attending as a bride or groom. Life seems like a game of Tetris; with different elements appearing that seem to have no relationship to each other, and only by holding onto multiple pieces and turning them over in your mind do they eventually fall into place and those inter-relationships build a clear landscape. So, for example, I like to understand how the evolution of the brain impacts on its functioning, how the organicity of the brain relates to a person’s interpersonal relationships, the way they express themselves in the world, the way the world imposes limitations and disabilities, how culture plays out in our assumptions, and the way we construct a legal system around all of that. Because this is also the journey that my patients experience, so it seems helpful if I can share in that same journey.

The hearing

I attended a hearing  (COP 13698546) on Thursday, 4 February, 2021 before Mrs Justice Judd,  as a novice observer.  I wasn’t too sure what to expect and unfortunately the case was not summarised at the start of the hearing. On entering the virtual hearing – with camera off and mic off – I was met with some surprise that I was there, as there had been some confusion about whether it was a private or a public hearing, and I was then asked who I was. My sense of having done the wrong thing kicked in. Having never attended a remote hearing as an observer only as an Expert Witness I panicked, so gave my full name and job role. They then clarified that they only wanted to know if I was attending as a member of the public.

There followed a significant amount of reflection about whether the hearing should remain as a public hearing, and there was clearly initially some preference in the room for it to be moved to a private hearing for the protection of P, as a young person “with autism spectrum disorder and complex developmental disorder” who (said the judge) “is very troubled and in need of considerable assistance”.

Steve Broach, applicant for the local authority was not at the previous hearing at which – it was reported – Mr Justice Keehan had listed the hearing as “private”. Nor was Hannah Taylor, representing the CCG, whose client had not even been a party at the previous hearing.  But Peter Mant had been there and explained: 

 “We simply took the standard terms of Hayden’s guidance at the start of the pandemic.  It’s a cut and paste from that rather than any considered thoughts.  It would be consistent with general principles of transparency to allow attendance with appropriate reporting restrictions.”

There was then a discussion about whether the case should be heard in the Court of Protection, or whether – because it’s possible that P retains capacity – it should be heard under the inherent jurisdiction (and hence become a private hearing in the Family Division).  

The judge said she was “concerned about the capacity test” provided by the consultant psychiatrist.   Steve Broach agreed that more information was needed about capacity and that there wasn’t sufficient basis at this stage for any final declaration, but said that there was “ample reason to believe that P may lack capacity” and hence sufficient evidence for an interim direction under s.48. of the Mental Capacity Act.   

We say” (said Steve Broach), “that the expert report gives us enough reason to believe that this young person may lack capacity to make decisions as to care and residence. So it’s appropriate to remain within the statutory framework of the Mental Capacity Act until we find capacity.”

Peter Mant agreed that “on balance, the threshold is met” and said, “we would invite you to continue on the current path”.

Having heard these submissions, the Judge agreed that there is sufficient evidence to satisfy the s.48 test that there is reason to believe that P lacks capacity to make  decisions about care and residence. It was agreed by all that an order authorising a deprivation of liberty was definitely in P’s best interests. The judge approved the order for instructing an Expert Witness, and asked for a new hearing to be reserved to her.

It was interesting to be able to see the steps that take place prior to the instruction of an Expert Witness, which is the point at which I would normally become involved in a case. 

I was surprised that I felt bizarrely nervous about attending without having done any preparation.  I wouldn’t normally dream of entering a court room without knowing the case and having read the court bundle, and being asked to introduce myself didn’t help! 

On reflection I had a sense of slight disappointment at not hearing the human story within the brief hearing for this case. My usual role is to meet with P and many people that are important in P’s life, to really try to immerse myself into the macro and micro culture of P’s life and understand how the instructed questions relate to P and P to them. Observing this hearing didn’t provide any of that, it felt more like attending a business meeting. But what I did experience, which felt very familiar, was that thread of all parties holding in mind that P is vulnerable, the deep and overt reflecting, and all parties wanting to engage in a protective process – including, in this case,  the request for P’s initials to be changed for the hearing if it was to remain as a public hearing.   

The case is likely to be back in court in mid-March 2021.

Dr Rebecca Poz is a Consultant Clinical Psychologist and Clinical Neuropsychologist with the Norfolk and Suffolk NHS Foundation Trust, and in private practice, and an Honorary Senior Lecturer at the University of East Anglia. She specialises in the psychology of Older People and the sequelae of brain injuries. She tweets @rebeccapoz

Photo by Jr Korpa on Unsplash

Who is to blame if the COVID-19 vaccination causes harm to P?

Bridget Penhale, 16 February 2021

Editorial notes: (1) For a different perspective on this same case, check out the earlier blog post by Bonnie Venter here. (2) The judgment has now been published SD v Royal Borough of Kensington And Chelsea [2021] EWCOP 14 (10 February 2021)

I attended the hearing on C-19 vaccination (COP 13707957, 10th February 2021) without knowing what the content was beforehand but on the recommendation of another OJCOP observer. I have an academic and previous professional interest in the workings of the COP and the MCA 2005 and have found observation of hearings to be useful and instructive; this hearing was no different. 

I was late to the hearing as the email response to my request was late arriving and I was already caught up in something else when it arrived, having thought that I had not got access to the hearing. When I eventually saw the message, I decided to try to attend and gained admission; as the issue was not terribly complex it was possible to catch up fairly easily. However, as I missed a good half of the hearing, I will mainly restrict my comments to views about the Judge and his handling of the hearing and the judgment that he reached.

The issue he had to address was whether it was in the best interests of Mrs P (the 70-year-old care home resident at the centre of the case) to receive a C-19 vaccination. The applicant, Mrs P’s daughter, said that her mother was vehemently opposed to vaccines because of the harm vaccination had caused to her (i.e. to the daughter) and as a consequence “she never wanted to receive any vaccines”.  This harm was not described in court: the judge did ask about her medical situation, but quite delicately – saying that he did not want to embarrass her – and she said she would rather not get into that. Mrs P’s daughter also said that the vaccine has not undergone rigorous safety trials – in particular for people with pre-existing liver and/or brain damage – and is unsafe.

The daughter also said that there was an alternative drug that could be used to protect her mother from the virus. This is an anti-parasitic medication called Ivermectin, which is currently being actively considered for use against the Covid-19 virus. When I researched the evidence so far about its use against C-19 I found it somewhat equivocal.  The drug is still subject to clinical trials as much of the previous evidence relates to use with animals. As with many such medicines, Ivermectin also has a number of side-effects (including nausea, vomiting, joint pain and swelling, fever, blistering or peeling skin and hives).  Side effects which might result from any use as an anti-viral agent are not yet clear. (Check out this Medline Plus information here.)

So, it seemed to me that the daughter’s argument that her mother should not have the vaccine as it has not been proved to be totally safe, but that she should be given medication that has neither undergone full clinical trials for use against the virus nor been approved for such use by any regulatory authority was somewhat spurious.  Mr Justice Hayden raised exactly this concern during the hearing, commenting to Mrs P’s daughter, “you’re going for the unknown, the unapproved, and that’s the highest risk of option of all”.  She replied: “What I’m asking for is quite a maverick position, I understand that.  I am fighting for this because that’s what my mother would do if the situation were reversed.”

Overall, I was impressed with the way that the Hon. Mr. Justice Hayden conducted the hearing – for his incisive questioning and points made, his empathy when questioning respondents and witnesses and his ability to relate to diverse individuals without losing sight of the overall purpose of the hearing and his role in this. Some of his observations about the effect of the pandemic on care home residents were quite moving. These showed his knowledge and understanding of the issues involved for both residents and their families, but also particularly for care staff – with their responsibility to act to both protect residents and also to maximise well-being (especially in relation to mental health). Although this centred on those for whom they have a duty of care, the Judge also acknowledged the tensions and challenges for care workers with their own personal and familial situations, describing Mrs P’s key worker as “heroic”. His humanity and clear focus on Mrs P and the issue of what was in her best interests came across very clearly. And the oral judgment was both thorough and well considered, even though presented in a comparatively short time (and in real time at the end of the hearing). 

The court’s decision was counter to what the daughter was arguing for.  The judge found C-19 vaccination to be in Mrs P’s best interests.  But he acknowledged that the daughter had argued her case forcefully and eloquently. I felt that the fact that there was no apparent outburst or evident distress on the part of the daughter on hearing the decision indicated her sense that he had listened, heard and responded to her statements and there was a recognition of this on her part.

In response to her question following the judgment about who would be liable if anything happened to or went wrong for her mother as a consequence of having the C-19 vaccination, Hayden J’s simple and immediate response was “Me”.  I saw this as evidence both of his humanity and his skill as a Judge. The daughter was surprised at this reply and said something like, “It was a serious question”, to which he said “I was being serious too: you would start with me.” This was refreshing in its honesty and perhaps exemplifies his position as a Senior Judge (Vice-President) of the Court.

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 tweets @bpenhale

Photo by Steven Cornfield on Unsplash

Covid vaccination in the Court of Protection

By Bonnie Venter, Monday 15th February 2021

Editorial notes: (1) For a different perspective on this same hearing, see the blog by Bridget Penhale (click here); (2) The judgment has now been published SD v Royal Borough of Kensington And Chelsea [2021] EWCOP 14 (10 February 2021)

As an academic researching and teaching Medical Law, I easily find myself reducing the law to nothing more than paper. I’m constantly surrounded by an array of textbooks and piles of academic articles scattered across a desk. I spend countless hours over-analysing words and trying out counter-arguments. And somewhere amidst all of this, I tend to forget that there are human lives deeply embedded within the medico-legal world I’m engaged with.  That’s why observing this case was so important for me.

Watching this hearing (COP 13707957, 10th February 2021) was humbling. It’s astounding how much one can learn not only about the inner working of the law but also about life more broadly from a few hours of observing a case. 

Before I elaborate on my experience of the hearing, I should disclose that from the first minute of joining, I was awestruck to be attending a hearing before Mr Justice Hayden. My legal training took place in South Africa and my first exposure to his judicial reasoning was in the internationally reported case of Alfie Evans, a young child with a neurodegenerative disorder from whom he authorised withdrawal of life-sustaining treatment.  I have great respect for how he handled the Evans case in the face of the additional burdens that widespread publicity and external pressures added to an already heart-breaking and complex matter. These included external influences from abroad, and overwhelming public outrage, that was to some extent fuelled by manipulation of the legal facts by some media (especially social media). (See the factual BBC report on the case following the child’s death here).  Given what I knew of the Evans case, I expected to see the same sense of careful ethical consideration and humanity in Hayden J’s judicial reasoning in other cases and was reassured to find that this was so in the case I observed.

The hearing

The person at the centre of the case (“Mrs P”) is a 70-year-old woman living with alcohol-related dementia (Korsakoff syndrome) in a care home.  Everyone agreed that she lacked capacity to make her own decision about whether or not to have a Covid-19 vaccine.  The applicant, her daughter (as a litigant in person), took the position that it was not in her best interests to be vaccinated.  The Trust, represented by Tony Harrop-Griffiths, contended that it was in her best interests to be vaccinated as soon as possible.  

Throughout the hearing, Mr Justice Hayden showed sensitivity and true regard for all involved in the matter.  He did this with a firm focus on Mrs P as the person at the centre of the case.  So, after Mrs P’s daughter gave evidence on why she thought her mother should not receive the vaccination – at least not until there was more scientific evidence about its side-effects and efficacy – he said: ‘the question for me is how do I keep your mom safe now, today, tomorrow, next week, next month…if I go down the route you are asking me to go?’  

Mr Justice Hayden outlined the gravity of the situation for Mrs P at a time when most people in her care home have now been vaccinated and it is likely that the very strict rules restricting visits to the care home, and excursions from it, will be relaxed.  This is important because ‘many of those people [in the care home] have had no physical face to face contact, no touch with relatives. In many cases, that has led to a deterioration in their conditions and in their mental health…’ [Once everyone is protected] ‘mental health needs can be met and the touch – people can see their sons, they can kiss their daughters, they can hold their grandchildren and that well-being for those in care homes is immeasurably important’. When that happens, and there are more visitors to the care home, Mrs P will be at much greater risk than currently if she has not been vaccinated.

It is not only his sense of compassion and his ability to capture the consequences of the daughter’s request that is moving but also his ability to define the role of the court in ensuring that Mrs P’s best interests are protected. 

But Mr Justice Hayden was not the only inspiring person in the room. 

A lot can be said about the daughter’s determination to fight for what she believed was in her mother’s best interests. She was joining the hearing from her current home in America – and had got up at 4.30am to be able to do so. It was clear that endless hours of research (on PubMed) and rehashing of a difficult past, went into her preparation for the hearing.  She obviously found it extremely challenging to have to present and defend her own position, and act as her mother’s voice, in court.  Her presentation was impressive – Hayden J described her as “an articulate and well-read woman” – and her occasional tears as she talked about how she had ‘parented’ her own mother through difficult times bore testimony to her commitment and care for Mrs P. She believed her mother would have refused the vaccination if she could.  Her mother, she said, would have made the decision jointly with her daughter.  She was keen to find “an alternative solution” to the vaccine that would keep her mother safe. 

Of course, it’s not possible to overlook Mrs P’s presence. She was not physically present in the hearing, but she was masterfully ‘brought to life’ not only through the statements of her daughter (“she’s very strong-willed and strong-minded”) but also her key worker.  We heard from him about Mrs P’s sometimes ribald sense of humour, her kindness and desire to help with routine jobs around the home – and also that she has a “male friend” at the home: “they sit holding hands all day long in the lounge: I don’t know if she can remember his name but they find each other every day!”.

In the end, Hayden J decided that it was in Mrs P’s best interests to be vaccinated against Covid-19 right away.  He based his decision on the fact that Mrs P does not currently seem to be objecting to being vaccinated (indeed indicated her preparedness for that) and that she is in a vulnerable category in a country that has one of the highest rates of infection in the world, and has ‘co-morbidities’ – including her dementia which means she cannot understand social distancing, which put her further at risk.  Waiting for a year to see “how the science evolves” (as suggested by her daughter) would mean leaving Mrs P at much greater risk of Covid-19 infection during that period – which (he decided) is not in her best interests.   

Reflections

When reflecting back on this case, there are three observations I would like to share. 

1. Relationship dynamics 

Two people who know Mrs P very well were in the courtroom. One has known her as a daughter and as a carer (as her alcohol-related issues progressed) for decades.  The other, Mrs P’s key worker, has known her for eight years, since she’s been in the care home where he works six days a week – he knows the intimate detail of her day-to-day life and her current behaviour, wishes and feelings.

I thought the key worker (called unexpectedly into virtual court when Hayden J asked for him to attend the hearing) was in a difficult position.  Mrs P’s key worker is essentially the link between mother and daughter – and it seems they have a generally good relationship.  She described him as “a very remarkable man because, like me, he does have the ability to calm my mother down when her rage just explodes”.  Appearing in a hoody, clearly just called from his work, he was (he said) “not prepared for this meeting today”.  Hayden reassured him that “I can get far better evidence from people sitting there in hoodies than from people who’ve been preparing for three days and put a shirt and tie on!”.  

During his statement, especially in response to questions directed at ascertaining P’s views on whether she would have accepted the COVID vaccine or not, I could not help but wonder how the relationship dynamic between Mrs P’s key worker and her daughter influenced what he felt able to say. 

When he was asked to describe Mrs P, he did so vividly and with affection. As Hayden J said, “in this remote court room, he made Mrs P come alive”.  She’s “a very funny lady”, he said, but when asked about her sense of humour he demurred: “I can’t say some of her jokes in court because of some of her language!”  He was very clear that if Covid-19 were to enter the care home, Mrs P would be at great risk, however hard they tried to keep her safe.  

The judge asked the key worker “Have you had a conversation with her about the vaccine?”. He spoke about the day when the vaccines were given at the care home:

‘She came into the room where the vaccinations were being done and we had to explain to her she could not have the vaccine that day.  She was trying to get it done. She told me because everyone else was getting it done…’

He explained that they told Mrs P that she couldn’t be vaccinated because it was against her daughter’s wishes.  Mrs P stood around for a while and then “within 20 minutes she forgot about it”.  It seems that (as the judge pointed out) “Mrs P forgot that she didn’t like vaccinations”. 

Observing this exchange highlighted for me the delicate balance between providing a reflection of Mrs P’s current wishes and feelings and keeping the relationship between those involved in Mr P’s life intact. Especially, since (as Hayden J pointed out) Mrs P’s daughter and her key worker will still have to work together productively after the hearing to protect Mrs P’s best interests. 

2. Interpreting actions 

For me, one of the most striking observations from this hearing is how the behaviour we exhibit during our lifetime is brought into the court and analysed through a legal lens as evidence for best interests decision-making.  

It was clear from her daughter’s testimony that Mrs P subscribed to the notion of ‘doctor knows best’. Her daughter mentioned that Mrs P ‘…places a lot of emphasis and respect on people in positions of power – doctors, nurses, lawyers – they know best’.  She gave the example that her mother – unfortunately – had her white fillings removed and replaced with inferior amalgam ones because ‘the dentist said it was the best thing to do’. 

It was interesting to see how these reports of Mrs P’s actions earlier in her life were taken by Hayden J as evidence that she would have been likely to trust clinical judgment on the vaccines. In his judgment, he specifically emphasised:

 “She [Mrs P’s daughter] told me that historically her mother had been too passive in relation to the establishment, generally, and to the medical profession in particular. I suspect that may be to some degree generational. Deference is no longer a part of public life in the United Kingdom and there is a healthy questioning of medical advice, greatly aided by access to the World Wide Web. That was not what Mrs P believed. She trusted her doctors. She did more or less as they advised.  The doctor was always right; she came from a generation that did not like to trouble the doctor.  [Mrs P’s daughter] told me how that extended in her view to her mother having her fillings replaced… […]  That compliance was part of the way that the capacitous Mrs P lived her life.  I have no reason to believe that that changed as she progressed through life.” (Mr Justice Hayden)

This shows how in the absence of documentary evidence about our wishes, our day-to-day conversations and actions can be reported to the court and inspected for what they might reveal about our beliefs, values, wishes and feelings now that we lack capacity to express them ourselves in the new situation we’re in. 

It highlights, for me, how important it is to not allow your past comments and actions alone to speak for you but to make your own voice heard while you are able to do so.  

3. The importance of advance decisions and advance statements

Anyone determined to refuse Covid-19 vaccination (or any other medical treatment)  can lawfully do so if they have the mental capacity to make that refusal. They can also plan in advance for refusing vaccination (or any other medical treatment) after losing mental capacity in the future by making an Advance Decision to Refuse Treatment (ss. 24-26 MCA 2005). Unfortunately, for those of us who know that the possibility of making an advance decision exists, and know of treatments we might want to refuse under certain conditions, getting around to making one seems to be one of those things that is always on our to-do lists”. ‘I’ll get around to that later, I’ve got time – right?!’ 

After observing the hearing, I now have this gnawing feeling that these decisions are not something that should be left for later.  If you feel strongly about refusing a particular treatment (completely, or under specific circumstances) whether it be vaccinations, or life-sustaining treatment if (say) you’re in a permanent coma or vegetative state, or organ donation, you must take the time and make your wishes known. Write it down and talk about it! By simply taking the time out to do this, we can save our loved ones from being involved in making extremely difficult decisions on our behalf – in best interests meetings with clinicians, and (if disagreement persists) in the courts.  I would like to encourage everyone who would want to refuse treatment under some situations to set time aside to complete an advance decision form on the Compassion in Dying website. It is also possible to write an advance statement explaining what treatments you do want to receive and giving other information about what matters to you and the kind of social, or religious, or personal care you’d like to receive.

As a direct result of watching this hearing I have made my own advance decision.  I found the Compassion in Dying website extremely informative, easy to navigate and helpful in setting out the most common end-of-life situations where an advance decision could be relevant. 

My take-home message from having observed this court hearing is simply to always remember that there are delicate and real human lives woven into the letter of the law. The law teaches us to think in black and white, and this skill has its merits. Yet, it is often necessary to add a bit of colour and texture to that polarised black and white picture, and that’s what I got from observing the strong personalities and compassion, care and courage exemplified by all involved in this hearing.  The reverberating effect on my own life – my decision to make an advance decision – has also been a positive outcome of understanding how human lives – and deaths – are deeply embedded in the medico-legal world.

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

Photo by Hakan Nural on Unsplash

Endoscopic dilatation against P’s wishes?

By Ravina Bahra, 10 February 2021

This hearing (case number: COP 13711789) before Ms Justice Russell on 9 February 2021 concerned an application to authorise up to five treatment procedures – likely to involve some degree of restraint amounting to deprivation of liberty – that P does not want to undergo.

This was a directions hearing to determine what additional evidence was required before a decision can be made. The final hearing is planned to take place at the end of February.

Background

P, who we will refer to as Mr Jones, is a man in his 50s with a diagnosis of schizophrenia and signs of vascular cerebral atrophy. He also has Type 1 diabetes.

Since February 2018, he has had a benign peptic oesophageal stricture (abnormal tightening or narrowing of the oesophagus) which has caused him to suffer from progressive dysphagia (difficulty swallowing food and fluids) and intermittent vomiting. This has had an impact on his ability to eat and drink, which consequently has an effect on his Type 1 diabetes and predisposes him to pre-renal failure.

The applicant, the NHS Foundation Trust, was seeking a declaration that it would be lawful to treat Mr Jones – against his wishes – with a series of endoscopic dilatations, to prevent his condition from worsening. (Check out the guidelines on endoscopic dilatations here). Mr Jones has repeatedly stated that he does not want to have any planned endoscopic dilatation.

Rhys Hadden acted as counsel for the NHS Foundation Trust during these proceedings, and provided a very useful opening introduction to the issues in the case. Mr Jones, the respondent, was represented via the Official Solicitor as his litigant friend: Richard Partridge acted on his behalf.

The Hearing

The NHS Foundation Trust sought an order that would enable Mr Jones to be treated. The proposed procedure is an endoscopic dilatation, without which his stricture will continue to narrow until completely obstructing his oesophagus and leaving him unable to swallow. Mr Jones would have to undergo up to five dilatations over a period of 3-6 months. These would prevent his condition from worsening and avoid further unplanned admissions to hospital related to this condition.

Though Mr Jones has repeatedly refused to consent to this procedure, his condition has been reviewed by three different consultants over the last four months, each finding that he lacks capacity to make this decision. Another capacity assessment has been scheduled to take place in mid-February. If Mr Jones is found, in a final determination, to have capacity to make his own decision about endoscopic dilatation, the court will lack jurisdiction. If he is found to lack capacity to make his own decision, then the court will make a decision in his best interests (in accordance with s. 1(5) MCA 2005).

At a next hearing, the court will need to decide:

  • Capacity: Whether a final declaration can be made that Mr Jones lacks the capacity to make a decision as to whether to undergo a series of endoscopic dilatations – and if so;
  • Best interests: Whether it is in Mr Jones’ best interests to proceed with a series of endoscopic dilatations (between two and five) over a period of 3-6 months, taking account of Mr Jones’ own wishes, feelings, values, and beliefs.
  • Deprivation of liberty: Whether the restrictions to Mr Jones’ liberty associated with the proposed treatment (e.g. sedation and possibly physical restraint) amount to a deprivation of liberty under Article 5 of the European Convention on Human Rights and should be authorised as lawful under s.4A(3) and 16(A) MCA 2005.

The view of the NHS Trust currently is that Mr Jones lacks capacity to make his own decision and that it is in his best interests for the endoscopic dilatations to be carried out. The Official Solicitor has reserved her position on capacity and on best interests, pending another capacity assessment and a meeting with Mr Jones to ascertain his wishes and feelings.

Before the next hearing an additional capacity assessment will be carried out and there will be a report of Mr Jones’ wishes and feelings. A care and treatment plan will also be prepared. At present, the extent to which Mr Jones would be deprived of his liberty should he undergo this procedure is unclear as the care and treatment plan was not presented before the court.

Though this was a very short hearing (lasting a total of ten minutes), the ground covered was extremely important and the decision will be consequential – whether Mr Jones will be deprived of his liberty up to five times and given treatment he does not want but which is considered to be in his ‘best interests’, or whether he has the capacity to refuse treatment, leaving his stricture to worsen.

I hope to be able to attend the next hearing and follow this case to its end.

Ravina Bahra is an aspiring barrister and is interested in politics, social welfare, migration matters, and access to justice. She has an undergraduate degree in Law from the University of Essex and recently completed a postgraduate degree in Human Rights at the London School of Economics. She tweets @RavinaBahra

Photo by Lucas Benjamin on Unsplash

Returning P to her family abroad during a global pandemic

By Ravina Bahra, 1st February 2021

Editorial Note: The judgment has just been published (5th February 2021) and is available here.

I had the opportunity to observe this hearing (COP 13588956) before Mr Justice Hayden at the Royal Courts of Justice (via MS Teams) on 28th January 2021, having requested access at 9:35am and received a link to the hearing within twenty minutes.

This hearing was about whether or not the person at the centre of the case (who I will refer to as Ms Doe), currently deprived of her liberty in a care home, can return to Poland, the country of her birth, to live with her sister and her niece who are keen to look after her themselves. Ms Doe hates her current placement and has been saying for more than a year that it’s a “horrid place” and that she wants to go back to Poland to be with her family. 

The application before the court from Ms Doe (via her litigation friend the Offical Solicitor) was a challenge to the standard authorisation granted by the Local Authority pursuant to section 21A of the Mental Capacity Act 2005 as regards the best interests qualifying requirement.

Ms Doe was represented at the proceedings by Emma Sutton of Serjeants’ Inn Chambers, instructed by Lauren Crow (MJC Law). The two respondents were the commissioning bodies: the Local Authority, represented by Zoe Whittington of Cornerstone Barristers, and the Clinical Commission Group (CCG) represented by Samantha Paxman of Browne Jacobson LLP, instructed by Hannah Child of the same firm.

I have a background in law and human rights and have become increasingly interested in issues pertaining to access to the justice system and the general accessibility of the law to the public. I have also previously had the opportunity to sit in the public gallery of a Crown Court, but I do not have much experience with the Court of Protection or with remote hearings. I was aware that observing a hearing of such a personal nature, one tackling completely different issues to those I’d seen during hearings dealing with crime, would offer me a new perspective. I did not realise, however, just how limited my knowledge of the intricate details of Court of Protection hearings actually is – and I learnt a lot during this hearing.

Background

The applicant at the centre of the proceedings, is a woman in her sixties, born and brought up in Poland, who has been living in England for more than 40 years.

She has a diagnosis of persistent delusional disorder or somatoform pain disorder, and a comorbid depression. As a consequence, Ms Doe frequently refuses to eat, drink or walk, and she believes that she needs to have her legs amputated due to the perceived pain. Following earlier court hearings, it was ruled that it was in her best interests to be fitted with a PEG tube for administration of nutrition, hydration, and medication – to be delivered, if necessary, against her wishes and with reasonable and proportionate restraint if required.

The purpose of these proceedings was to determine whether it is in her best interests to remain at her current placement in a care home, or whether she should be allowed to move to Poland to live with her sister and niece, as she and they all wish.

At a previous hearing on 23rd July 2020, final declarations were made that Ms Doe lacks capacity to make decisions about her residence. The decision must therefore made by the court and must be made in Ms Doe’s best interests. Given her strong wish to return to Poland, enquiries had been made prior to this hearing about her benefit entitlement, her health and social care rights, her citizenship status, and other issues that might have a bearing on her position as a consequence of the UK leaving the European Union (e.g. her pension entitlement). Also, an independent social worker had been instructed to assess the practical viability of Ms Doe returning to Poland, both in terms of travel arrangements and in terms of checking out the ability of her family to provide her with the necessary support. All such enquiries had produced very positive reports.

Risk, Rights, and Happiness

Ms Doe was seeking a best interests decision that would allow her to move to Poland, in accordance with the wishes of herself and her family.

Under Schedule A1 of the Mental Capacity Act 2005, a person may not be detained in a care home in circumstances that amount to deprivation of their liberty unless certain conditions are met, one of which is that it is in their best interests to be detained in this way (s. 16(1)). The usual best interests criteria apply (s. 4 Mental Capacity Act 2005), including:

  • ascertaining the person’s own wishes and feelings (s4(6)(a)) and their beliefs and values (s4(6)(b)).
  • consultation with those engaged in caring for the person or interested in their welfare.

It is also a key principle underpinning the Act that any decision made on behalf of a person who lacks capacity should be the least restrictive of the person’s rights and freedom of action (s. 1(6)).

Ms Doe has been clear and consistent in her wish to return to Poland for a long time and repeated that to her solicitor in a telephone conversation on 22nd January 2021. She confirmed she would like to return as soon as possible, and would accept professional support. It is, said counsel, “a wish on which she has never wavered” and significant weight should be given to Ms Doe’s wishes. Ms Doe’s values and beliefs are also important – and they include caring for family members. She had cared for her father following her mother’s death and remained with him in Poland when he was unable to care for himself. Returning to Poland will mean that she can be with her family (she now has none in the UK), freely speak her first language, and will be able to consume food from her native land, which carers at her current residence have stated that she has frequently said she misses. Also, Ms Doe and her sister are Catholic and she will be able to engage in religious activity and properly practise Catholicism with support from her family.

Ms Doe’s family are keen to welcome her home. In judgment, Mr Justice Hayden said “what shines through is their unflinching, unhesitating commitment to her”.

In addition to Ms Doe and her family, many other people involved with Ms Doe were consulted and they unanimously expressed the view that moving to Poland would be in her best interests. They included the local authority social worker (who was in court as a witness), the CCG, the psychiatrist, and her GP.

Most importantly, returning to the care of her family in Poland would offer a less restrictive way of providing Ms Doe with the care that she needs. At present, she is in an institutionalised setting where many of the residents have dementia and this limits her ability to socialise, develop friendship, and engage in group activities. She has often simply refused to leave her own room.

The Official Solicitor was in no doubt that it is in Ms Doe’s best interests to return to Poland and that, although there are still some ‘unknowns’ about what her life would be like there and the extent to which her family will actually be able to provide her with the care she needs, as much as possible has been done to sort this out in advance, and the remaining issues fall into the bracket of sensible risk appraisal.

In court, counsel for Ms Doe quoted from the famous case of Re MM (An Adult) [2007] WEHC 2003 (Fam)), where Mr Justice Munby said:

The emphasis must be on sensible risk appraisal, not striving to avoid all risk, whatever the price, but instead seeking a proper balance and being willing to tolerate manageable or acceptable risks as the price appropriately to be paid in order to achieve some other good – in particular to achieve the vital good of the elderly or vulnerable person’s happiness. What good is it making someone safer if it merely makes them miserable?

The consequences of the pandemic

One of the biggest and most pertinent concerns raised by Mr Justice Hayden in the proceedings was that of the current COVID-19 pandemic and national lockdown in the UK. The effects of the pandemic were discussed in particular in relation to vaccination and travel plans.

Very early on in the proceedings, the judge raised the question of the COVID-19 vaccination.  Ms Doe has already been offered the vaccination owing to her vulnerabilities. However, she had refused the vaccine and was deemed to have the capacity to refuse it. It is not required that she has one in order to travel from the UK to Poland: all that is needed is a negative test result.  “I wasn’t thinking in terms of the regulations,” said the judge, “but about Ms Doe’s best interests. There is a very significant body of evidence that it would be in her best interests to have the vaccine and I’m not confident she will be offered it expeditiously in Poland”.

At this point, Ms Doe’s social worker was called to give evidence. She stated that she had discussed the vaccine with Ms Doe on 25th January 2021, four days prior to the hearing. Ms Doe had said that her nephew had recently travelled between Germany and Poland without needing to be vaccinated so she didn’t feel it was required.

The witness went on to mention that they have previously discussed Ms Doe’s fear of needles. She has often been reluctant to have antipsychotic medication because she finds the injections to be painful, and this refusal that has led to hospitalisation. The witness did also say, under questioning, that it has sometimes been possible to persuade her to have injections in previous circumstances. Mr Justice Hayden asked: “Would you think it appropriate for you to persuade her of the benefits? I don’t mean force it on her”, to which the social worker replied, “My understanding is that the care home manager has been doing that”.

The judge came back to this issue towards the end of the hearing, saying “I don’t want to obsess about this but…”. He continued to express a hope that Ms Doe would be vaccinated, and that there would be sufficient time before her departure for her to receive both of the two injections required (now usually 12 weeks apart). He did also acknowledge, however, that if she has capacitously chosen not to be vaccinated, “that is her right”.

The other pandemic-related issue was whether Ms Doe, and the two nurses who would need to travel with her, were validly exempt from the lockdown requirements for the journey to Poland.

According to Schedule 3A(1) of the Health Protection (Coronavirus, Restrictions) (All Tiers) (England) Regulations 2020/1374, a person can only lawfully leave the place where they are living if they have a “reasonable excuse”. One of those reasonable excuses is “moving house” (s. 2(2)(f) (iv)) and there was some discussion as to whether that is what Ms Doe is doing, and the status of the two nursing staff supporting her. Commenting that “even the most enthusiastic defender of the regulations couldn’t contend they’re a model of pellucid clarity”, Mr Justice Hayden concluded that “even though this bespoke plan doesn’t fall comfortably within any of these listed excuses, it is not an exhaustive list, and in any case, I would hope that an order from the Court of Protection would assuage the concerns of even the most vigilant official at border control”.

Mr Justice Hayden delivered the ex tempore judgment after a short adjournment. He decided that it was in Ms Doe’s best interests to move from the care home to live with her family in Poland, in accordance with the order prepared by the Official Solicitor. He said he has “very little hesitation in coming to the conclusion that whilst the plan is not free from risk, it offers distinct and obvious advantages. It broadens [her] social horizons, it returns her to her family, it returns her to her homeland, and most importantly, it is consistent with her clearly and frequently stated wishes”.

He also commended the two nurses who were planning to travel with Ms Doe to her family’s home in Poland, and to stay there for some days to support her in settling in and helping her family get used to the care she needs. They would need to self-isolate on return and their willingness to support Ms Doe in this way was, he said, “incredibly impressive”:

Five days of isolation in these difficult times is a challenge and to do it for someone else in the course of your employment is, I think, heroic. I don’t know that the public fully appreciates the sacrifices that some of our nurses make.

This aspect of the case was also covered by the media here (“‘Heroic’ Derbyshire nurses face five-day isolation after mercy trip“).

Reflections

I felt overwhelmingly that Mr Justice Hayden had made the correct decision and am convinced that that opinion was shared across the parties to the proceedings. It seems only right that Ms Doe should be allowed to move from a care home she says she hates to a family home with her sister and niece who are committed to caring for her.

It is often easy to underestimate the impact that court hearings have on people’s lives, and to forget that real people are affected by the decisions of the court, when reading a case summary or article. Even without Ms Doe’s presence – she had been invited to attend court but had declined – there was a definite unanticipated human dimension from watching a hearing that you simply don’t get from reading a judgment.

Moreover, having recently completed a degree in Human Rights, I benefited from contextualising my understanding of rights within the setting of the Court of Protection. Though national and international human rights mechanisms were not directly involved in this case, these proceedings did deal with deprivation of liberty (Article 5 of the European Convention on Human Rights) which underpins section 21A applications. It also touched on Ms Doe’s private and family life, and her personal beliefs and values.

Watching how this hearing emerged over time and took shape through the different arguments presented was powerful and made the proceedings feel very real.

When the proceedings ended, I felt that I had chosen a very pleasant hearing. It was relatively straightforward, without disagreement between parties, and the judgment was one that Ms Doe and her family would be happy with. The judge had a warm demeanour and even had a kind comment for the social worker about her stained-glass window, which was visible behind her as she gave evidence. 

The judge praised everyone involved in the case: “I’ve been extremely impressed by the presentation of this case and by the implementation of the November order by all the professionals concerned. Good practice requires to be identified, and it’s a pleasure to do so.”  In particular, he singled out the position statement prepared by Ms Doe’s counsel, Emma Sutton, as presenting “an extremely thorough consideration of competing issues”: she has “set out the factors that go into the best interests analysis and she has navigated her way through the relevant provisions of the Mental Capacity Act, looking at Ms Doe’s wishes and feelings, both past and present, and looking at her beliefs and values”. He described Emma Sutton’s position statement as “a model of its kind”. Elements of it are to be incorporated into the judgment.

I felt that I had been fortunate in observing a hearing that showcased an ideal standard for best practice and for written and oral submissions. This was informative for me as an aspiring advocate in gaining a first-hand understanding of effective advocacy.

Lastly, I gained a new and all-important understanding of the wide-ranging impact of the COVID-19 pandemic. Consideration of the pandemic and lockdown took up a significant amount of the proceedings, and it was clear to see how COVID-19 has infiltrated every aspect of life from the concerns surrounding Ms Doe and the vaccine, to whether it would be feasible for Ms Doe to return to Poland, and of course to the remote hearing itself.

Ravina Bahra is an aspiring barrister and is interested in politics, social welfare, migration matters, and access to justice. She has an undergraduate degree in Law from University of Essex and recently completed a postgraduate degree in Human Rights at the London School of Economics. She tweets @RavinaBahra

Photo by Dominik Scythe on Unsplash

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