In a guest post, Simon Hunter of Three Stone Chambers looks at a recent – and tragic – case in the Court of Protection

Abortion and the difficult question of when life starts have been regularly in the news in recent years, particularly in the United States, where ongoing debates about women’s reproductive rights are increasingly at the forefront of political conversations. However, the end of life can sometimes lead to equally difficult questions about when a person ceases to be, in any meaningful sense, alive.

The medical case

In Re XY [2024] EWCOP 37 Mr Justice Hayden was called on to consider the best interests of a patient at the end of his life. XY, a 66-year-old man, was admitted to the hospital in December 2023 with pneumonia, and whilst there he suffered a cardiac arrest. Had that happened at home he would likely have died, but the medical staff at the hospital were able to resuscitate him. Over the subsequent days, however, he suffered from significant multi-organ failure and entered a prolonged disorder of consciousness.[1]

The treating Trust (and, later, all the medical experts), concluded that it was not in XY’s best interests to continue to receive ventilation and clinically assisted nutrition and hydration (“CANH”). The Trust applied to the Court of Protection for declarations accordingly.

Those declarations were opposed by XY’s family.  Factually, there was a difference between the family and the doctors about whether certain muscle movements were reflex actions (i.e. were physical ‘jerks’) or were genuine neurological responses to stimuli and experiences. Ultimately the medical evidence was clear: the responses were reflex and not neurological ones.

The medical evidence was also clear that, whilst some of XY’s organs may have the ability to recover (indeed his kidneys showed signs of having done so), his brain would not. Professor Derrick Wade, well-respected as an expert in Court of Protection cases, opined that “unlike the other organs, the brain does not have capacity to recover” [14]. Medically speaking, there was no prospect of XY recovering any significant brain function.

Hayden J commented on the evidence of Dr A, one of XY’s treating physicians:

“I also agree that burdensome treatment of the kind contemplated here, can only be truly ethical where it can achieve benefit for the patient. Here, the treatment is futile. Dr A believes that XY is no longer receiving treatment in any real sense of the word i.e., it is not treating any condition. In short, it generates harm, not benefit and is irreconcilable with his professional oath. I entirely understand why he has come to that conclusion and for my part, in the light of my analysis above, cannot see how he could have arrived at any other” [38)].[2]

Dr Bell, XY’s family’s own medical expert, put it thus:

“XY’s present situation is now reduced to… a ‘physical physiological existence, maintained solely by continuous medical and nursing intervention’.”

Professor Wade’s “forthright and uncompromising” opinion was that “the only opportunity that [XY] is being given is for a prolonged period of dying” [15].

XY’s Islamic faith

More interestingly for readers of this blog, the parties were also at odds about the propriety of removing XY’s ventilation and CANH at all. This dispute arose in the context of XY’s strong Islamic faith. As Hayden J said

“[XY’s family] believe in the capacity of Allah to perform miracles. They further believe that questions of life and death lie entirely in the hands of Allah and not a doctor or a judge” [5].

XY’s daughter gave evidence, quoting from the Quran, that the Islamic faith, as her father understood it, was that “he who kills a man, kills mankind; he who saves a man, saves mankind” [32], and Hayden J noted that there are parallels for this sentiment in both Judaism and Christianity. The family had formed a view that XY would want to remain ventilated, fed, and hydrated because his continued presence would “provide succour to his family”.

Hayden J commented as follows:

“Islam, as the family recognise, incorporates a wide range of interpretive theology. Their faith and belief, however, does not embrace an alternative view, namely that XY, as the sentient person and father they knew, might already have been lost to them, at or around the time of the cardiac arrest” [6].

Faith and the judicial process

At [19], Hayden J muses on the judicial function in cases of this nature.  He begins by asking rhetorically why judges occasionally describe cases of this nature as “challenging or difficult”. The medical evidence was clear, after all.  It was definitive and unanimous: XY had no prospect of significant meaningful recovery.  Hayden J’s answer to his own question was thus: “it is not, ultimately, the doctors or experts who determine cases”.

The judicial function requires a consideration of all relevant aspects of a patient’s life, of which the medical evidence is only a part.  This includes the patient’s faith or beliefs.  Simply put, a doctor ignores faith; a judge cannot.

Hayden J ends his musings as follows:

“[The judicial function is to] establish, with as much clarity as possible, what they might have wanted, by way of treatment, if they found themselves in this parlous condition. Every case is inevitably highly fact specific. The concept of ‘best interests’ is far wider than the purely medical.”

But just as medical considerations cannot be determinative of best interests questions in the Court of Protection, neither can faith beliefs be.[3] This conclusion is particularly stark in cases such as XY’s where the treating physicians have reached the conclusion that further medical intervention would itself be contrary to their own professional oaths.

At that point, the court is called on to balance two rights. One the one hand is the patient’s right to their autonomy of belief. On the other is the autonomy (indeed, the obligation) of the treating physicians to act in accordance with their own professional oaths.  Hayden J put it thus:

“The essence of autonomy is the promotion of an individual’s right to take their own decisions. The important proviso is whether those decisions are lawful or whether they require others to act in a way that represses their own autonomy, morally and ethically.”

On a practical level, where the Court of Protection is called on to decide between the hope of miracles on the one hand, and a wealth of contrary medical evidence on the other, the outcome is likely to be reasonably certain.  But this judgment is a welcome reminder that neither the medical evidence nor the evidence of faith or belief is paramount.

There will be cases where the medical evidence is less stark, where faith will be a more determinative factor. Whilst faith is often non-justiciable, such a case may include consideration of whether there is an ethical or faith-based difference between removing medical intervention previously provided and providing new interventions. It may also include considering whether further treatment is really, in the words of the Quran quoted above, to “save a man”.  Put bluntly, is a “physical physiological existence” the same as being alive?  Those questions will be “challenging and difficult”.

Conclusion

I have opined on this blog before that the Court of Protection is called on to make difficult decisions for people who do not have the ability to make those decisions for themselves; that, in some ways, most of its work is tragic in a proper sense. This is another such case. XY was clearly a wonderful, kind, and generous man. The judge recounts his culinary abilities and his joy in cooking for his family, his love for his allotment, his devotion to his faith and his community, and his humanitarian work providing water to remote villages in Bangladesh. I am certain that his loss will be keenly felt across continents.  I send my condolences to those who knew and loved him.

Simon Hunter

[1] Hayden J says, surely rightly, that the time has come to consign the old term for this condition – “persistent vegetative state” – to history.  It is, as he says at [4] “offensive to the dignity of the patient”.

[2] In fact, Dr A went further and said that if the declarations sought were not granted he would be compelled, ethically, to stand back from treating XY [18].

[3] To be clear, XY’s family were not suggesting in this case that XY’s faith was determinative by itself of the questions that the court had to decide.