By Zach Moss and Jemma Woodley, 1st September 2023
At a hearing in the Royal Courts of Justice on 22nd-23rd August 2023, Mr Justice Hayden made the decision to withdraw treatment (dialysis and clinically assisted nutrition and hydration) from a man in his fifties who was in a coma following a stroke.
There is, as yet, no published judgment, but this case (COP 14075103) has already been blogged by Rhiannon Snaith (“Withdrawing treatment from a pastor in a coma: Balancing religious beliefs and medical realities”). She describes, in detail, the background to the case, and the evidence that was given in court.
We watched the hearing too, and want to give our overall impressions of the experience.
We are grateful to the Open Justice Court of Protection Project for alerting us to this hearing and for its tireless work to ensure transparency in the court.
Reflections from Zach Moss
The first half of the day’s evidence served to build a picture of P’s current health situation. As someone who has observed hearings before concerning withdrawal of life-sustaining treatment I am familiar with some of the medical conditions usually explored. This case however was perhaps the sickest patient I’ve come across. The first half of the day’s evidence outlined just how sick P was. P suffered from stage 5 chronic kidney failure, requiring dialysis three times a week. P was also diagnosed as being in a prolonged disorder of consciousness. The prognosis from most of the clinicians who gave evidence was bleak, with the medical consensus being that P would likely not live beyond a year.
There seemed to be little doubt about P’s medical situation: the grim prognosis was perhaps more certain than any other case I’d observed. In previous cases, the focus has often been on the prolonged disorder of consciousness – the grade and prospects of recovery being explored. Often there are disagreements between the family (who visit often) and the expert (who doesn’t). This case did indeed have some elements of disagreement in terms of observed behaviours and the label of ‘vegetative state’ but I noted that Mr Justice Hayden made the point that there is, in these cases, sometimes very little practical benefit in focusing on the distinction between the vegetative and minimally conscious states. In this case, with P’s other medical conditions, this perhaps seemed even more pointless as he was also suffering from end stage kidney failure – a terminal illness.
Whilst the medical evidence was being discussed, I was struck by one moment, when Mr Justice Hayden asked that the relevant witness statement be brought up on the screen for the benefit of the family. This may seem a minor technical point, but I think serves to highlight the diligence and focus of the Court in placing P (and the family) front and centre. Given what is at stake, being mindful of the family and those close to P, and making sure they can follow and understand what is being discussed in terms of P’s medical situation and prognosis is crucial.
As the medical evidence seemed to be coming to an end in the hearing, it was becoming clear this was, in Mr Justice Hayden’s impression “not about preserving life, but from medical perspective… trying to focus on how to achieve for P the best death”. I took note of Mr Justice Hayden wanting to ensure he had a proper reflection of the medical evidence.
Another moment of note was where one of the witnesses, Professor Derek Wade (a consultant in neurorehabilitation) noted that of the hundreds of patients he’s seen in a prolonged disorder of consciousness, P was maybe in the bottom 2 – 5 patients in terms of the lower end of the spectrum of consciousness. In fact, it was made clear later in the day that P would not have met the criteria for dialysis in this condition. It was only due to the fact that P sustained a brain injury whilst already receiving dialysis that it continued, almost by default perhaps. It maybe highlights the grey area, lack of practical guidance and difficult situations medics face in these extreme situations.
Hayden noted: “…there comes a point where the laudable aspiration to prolong life is overtaken by the equally strong moral imperative not to protract death. Where that point arises is very difficult to identify…”
Another moment of note in the hearing, was when footage was played of P in the role of Pentecostal pastor delivering a sermon. I thought it a very powerful moment after listening to hours of evidence about P, to spending just a minute listening to P. The family was understandably and visibly upset at this point. I am not surprised.
During the second half of the day, P’s family members, and a close friend, gave evidence. Mr Justice Hayden wanted the camera focused closely on each witness in turn – a reminder of his desire and need to build as rich and detailed a picture of P through these witnesses as is possible.
With one witness, Mr Justice Hayden posed several moral thought experiments to try and glean P’s theological position on life-and-death issues: abortion, euthanasia and withdrawing treatment. Mr Justice Hayden almost apologetically stated at one point “I’m creating a nightmare scenario because P is in a nightmare scenario“.
By the end of the day’s evidence, it seemed clear to me as an observer of P’s strong faith, that P would likely have wanted treatment to continue and for his life and death to be placed in the hands of God. In particular, the Pentecostal belief in present day miracles seemed particularly relevant. It seemed Mr Justice Hayden was also convinced of this, and seemed to already be clear about what P would have wanted. This was confirmed when the judgment was delivered ex tempore the next day.
In fact, Mr Justice Hayden said he’d had little difficulty in reaching this conclusion. He explained, though, that whilst P’s wishes and beliefs are important, they are not (under the Mental Capacity Act 2005) to be regarded as determinative. This turning point in the judgment is not one I’ve observed before, so I was struck by how Mr Justice Hayden used the law to explain how in essence ‘context is everything’.
He had carefully weighed P’s wishes and beliefs in the context of the degree of P’s incapacity and the strength and consistency of medical views. It seemed the plan to bring P back to hospital 3 times a week for dialysis whilst being in a PDOC and dying from end stage renal failure was too much. Dialysis was characterised in this context as being“both burdensome and futile”. I thought it interesting as well that the wellbeing of the treating clinicians was taken into account (because, said the judge, P would have taken it into account). With P’s future treatment likely to cause the treating clinicians distress, Mr Justice Hayden had heard enough to make a judgment that P would “be the last person to want to impose such a burden on anybody else”.
I found this hearing another advert for the Court of Protection – in particular for its ability to function as a forum to explore complex medical and legal issues. As Mr Justice Hayden noted, these are incredibly difficult cases for everyone involved – made slightly more bearable by the professional approach of all those involved in working towards a resolution for P and his family.
Reflections from Jemma Woodley
Over the last two days I watched both medical professionals and brave friends and family take turns to give powerful evidence about P’s medical situation and his wishes and beliefs.
While the family gave evidence of P’s wishes, I was struck by their description of P’s uncompromising nature when it came to his religious beliefs and practices. It was clear throughout that P’s faith was the driving force behind this hearing.
Mr Justice Hayden did not hold back on exploring P’s religious beliefs. He asked both friends and family several hypothetical questions, designed to explore P’s personal views regarding topics such as euthanasia and abortion. At first I questioned the relevance of these hypothetical scenarios, but I came to realise that Hayden was intent on exploring the depths and possible limits to P’s faith, to further understand how far his religion makes up an integral part of his being.
His friend’s and family’s answers continued to demonstrate the depth of P’s faith. Hayden J was led to be confident that, in face of absolute suffering, his family and friends believed this would not stop P’s commitment to sanctity of life. They believed P would rather hold out for a miracle or for death – whichever is the will of God – even at the cost of personal suffering, rather than to have medical treatment withdrawn.
Hayden J was faced with a difficult decision. Where do you draw the line between protecting P’s faith and the family’s belief that he would want to continue treatment at all other costs, against the decision not to protract death and to manage this in a dignified way. I was struck by Hayden’s clear description of the decision before him:
“There comes a point where the laudable aspiration to prolong life is overtaken by the equally strong moral imperative not to protract death. Where that point arises is very difficult to identity.” – Mr Justice Hayden
In his judgment, Hayden J deemed the Trust’s application to withdraw life sustaining treatment was well-founded. Although the weight he attached to P’s wishes and beliefs was extensive, he told the friends and family present in the hearing that the weight attached to any individual’s wishes must be done within the context of the situation – that context being both the complex medical situation P is in and the consistent evidence given by all medical professionals involved. Hayden noted, in particular, the concerning burden of continuing dialysis for P.
I am confident that today we saw the very best of the Court of Protection. I was especially pleased to witness Hayden J’s continuing references to the importance of P’s autonomy throughout the two days of proceedings.
The decision served as a stark reminder that our views on the line between prolonging life and protracting death are different for us all. Talking, recording and sharing your wishes, on treatment and care at the end of life, has never felt more important to me.
Zach Moss and Jemma Woodley both work for Compassion in Dying – as Digital Manger and Information Support Officer respectively. The charity supports people with making plans for end of life and loss of capacity. They have both previously blogged for the Open Justice Court of Protection Project, e.g. here and here. The charity tweets @agooddeath
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