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  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