“A lively personality” in a complex medical case

By Daniel Clark, 13 May 2023

This case (COP 14013508) concerned serious medical treatment: namely, whether it was in P’s (we decided to call him Isaac) best interests to have a kidney transplant. As such, the hearing was replete with complex medical evidence provided by a range of specialists, and the medical evidence has been summarised and discussed in an earlier blog post: The most complex of best interests: Organ donation, learning disability, and the options on the table.

It would be easy for the protected party at the centre of this case to ‘go missing’ amongst a sea of expert opinion. However, I was struck how diligently the judge (Hayden J) worked to ensure this did not happen. Indeed, this hearing was the first time I’ve seen a protected party ‘come alive’ in a hearing despite their absence in court. 

The expert evidence
The judge’s commitment to discovering who Isaac is was evident during an exchange with one of the Consultants. Towards the end of his evidence, the judge asked the Consultant for his view of Isaac: his personality, who he gets on with, and how he “enjoys life”. The Consultant’s response was that Isaac enjoys life “in its current form…It will be different if he is coming to hospital for haemodialysis.” This is because Isaac “hates” the hospital environment, and going to hospital regularly (as is required of somebody receiving haemodialysis) “would be very distressing”. This was not, however, what the judge wanted to know, replying that “I’m trying to bring you away from the medical and look at the patient…the man who enjoys life would want to have the best shot at maintaining it”. 

To me, this speaks to an inherent tension between the medical model and a more holistic social model. This is not to say that this doctor did not want what was in Isaac’s best interests; rather that he saw the situation through the lens of Isaac’s relationship with medical treatment. As a result, Isaac the person was just out of view. The judge, on the other hand, was attempting to transcend the strictly medical, and seek an understanding of how Isaac’s personality could instruct us what his views might be if he were able to express them. 

Isaac’s parents
Both parents had joined the hearing via video link, and throughout the hearing the judge ‘checked in’ with them to ensure that they were able to hear and follow everything. They had one camera and it was the mother who took the lead role, but the judge ensured that both were ‘affirmed’ (i.e. made the statement that they would tell the truth, the whole truth and nothing but the truth), so that “if he [Dad] wants to chip in he can”.

The judge started by asking for “a pen portrait” of Isaac. His mother explained that “he’s quite a bubbly young man. He likes to interact and laugh…Not one single carer has said other than that he’s a wonderful young man. He seems to have a light, a personality – even though he can’t talk it just seems to shine through”. He enjoys spending spend time at a day centre and, when he’s home, he relaxes “like most of us”. 

Isaac also likes people watching, both at home and whilst out-and-about, and enjoys looking at street scenes on his iPad. He also enjoys watching videos of Boris Johnson and Piers Morgan, which the judge jokingly referred to in his judgement. 

The judge was particularly keen to understand in what ways Isaac can be affectionate, with his mum explaining that “some people he just really takes to and really loves”. He’s often affectionate to his mum but not so much with his dad, who explained that Isaac’s affection disappeared when he became a teenager (prompting the judge to joke that it sounded like perfectly normal teenager behaviour). However, Isaac does hug his dad when is unwell or in hospital, and his dad feels this shows that he is clearly a safe space for him in those times. 

Isaac’s mum explained that Isaac tolerated a RIG (insertion of a feeding tube) following desensitisation work with a specialist team, and continues to deal well with the site being cleaned. As she put it, “it’s beyond all my expectations of what he would’ve coped with”. Ultimately, this suggested that further work could be done to try and help Isaac tolerate the process of haemodialysis, and his mother would do research to see what could help keep the tube safely in place (as she had done following the RIG). 

Two things were apparent during the course of Isaac’s parents giving evidence. The first was that the judge was clearly eager to ensure that they both felt comfortable and relaxed in what can be an intimidating environment. He made jokes with them, was obviously interested in hearing about their son, and made frequent references to videos of Isaac he had been sent. The whole exchange was an exemplary demonstration of making somebody who was absent feel very present.

The second thing was that Isaac enjoys life. He’s supported by loving parents who help him to live as well as possible, and want to keep that up for as long as possible. His mum said that “if it doesn’t work it doesn’t work. But we have to try our best”. 

The judgment
In his oral judgment, the judge placed Isaac front-and-centre. As the judge put it, ‘descriptions of [Isaac] are not simply a backdrop. They are the way in for the professionals, the Official Solicitor,  and the Court to understand something of what [Isaac] himself would want’.

The judge stated that Isaac ‘is able to communicate in a variety of ways, through his behaviour, through his expressions, through his demonstration of love, approbation and indeed disapprobation’. All of this makes it very clear that Isaac ‘is a young man who wants to live. He has created, with the support of his loving and devoted parents, a life that is full and fun.’

The judge treated Isaac’s personality extremely seriously. To state what Isaac is like was not simply a tick-box exercise but a fundamental step to understanding what is in his best interests. Ultimately, the judge made me feel as though Isaac was present (in spirit) in the courtroom.

At the end of his judgment, in which he ruled that it was in Isaac’s best interests to continue with the desensitisation work to see if he will become able to tolerate haemodialysis, the judge referred to Isaac as “a lively personality” who’s “very fortunate to have parents who are as loving and committed to him as you are”. For an observer, those two things were very clear to see. 

Daniel Clark is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research takes seriously Iris Marion Young’s claim that older people are an oppressed social group, and is funded by WRoCAH. He also works as a carer. He tweets @DanielClark132