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  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 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.
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