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Opinion: Dying woman denied last hope

29 September 2023

It was not delusional of a patient to seek treatment abroad, says Nicholas Reed Langen

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DEATH is the only truly shared element of the human condition. Every life is unique, lived out on separate but entangled threads. We can never fully understand what it means to live as another: any understanding is bound up in our own experiences. The only thing that we can know for certain is that death will be faced by us all.

People who suffer from terminal conditions, such as Sudiksha Thirumalesh, the 21-year-old patient whose treatment was litigated anonymously before the Court of Protection last month, exist in a curious realm.

For people such as this, the shadow of their death is almost tangible. In most of these cases, doctors and their patients proceed hand in hand, patients guided by their doctors’ expertise. But Thirumalesh, who suffered from a rare mitochondrial disease that meant that her mitochondria failed to produce enough energy to drive her body, refused to accept her doctors’ prognosis and prescription. Her doctors’ view was that her death was imminent, and that the diminishing quality of her life meant that she should enter into palliative care. Their priority was alleviating her suffering over prolonging her life. Thirumalesh disagreed.

While Thirumalesh accepted her parlous grip on life, she wanted to continue to be treated actively, so as to maximise her chances of travelling to Canada and entering a medical trial there. This trial was not quackery, but it was untested and unproved. Given the nature of her disease, this is no surprise. There are fewer than 100 instances of this condition in the world. If any progress is to be made in combating the disease and developing a treatment, people such as her — whether they are sacrificing themselves for a greater good or rolling the dice one final time — are vital.

RATHER than acknowledge that Thirumalesh had agency over her own body, the hospital trust disputed her competence, bringing a case to the Court of Protection. The trust argued that she was incapable of making informed decisions about her treatment, and sought judicial intervention.

Giving evidence to the court about recent consultations with her, Thirumalesh’s lead doctor, Dr A, observed that she was “alert and engaged . . . as bright as I have seen her over the past months. . . She recognised me [Dr A], remembering my name and role and explained she knew about the court process.” Despite this, he was concerned that she would not or could not “accept the prognosis given to her by her doctors that she will soon die from this condition”, even if she also acknowledged that she could not survive anywhere in the UK outside an ITU.

There is no doubt that, in their minds, the doctors were doing what they thought was best. Their decisions were not made out of concern for NHS resources, or because they wanted to move on to newer, more exciting cases; but they were guilty of hubris. Doctors are not infallible or omniscient. But Thirumalesh’s doctors wanted her to act as though they were. Her refusal to accept their prognosis was branded a “delusion”.

Nothing suggested that Thirumalesh believed that she could not die, even if she was sceptical about how and when she might. She was not deluded: just determined to live. If she was to die — as she did, in hospital, earlier this month — she wanted to “die trying”.

This may seem incomprehensible to some, who see just a girl who was confined to an ITU bed and suffering an ever-diminishing quality of life; but that was not the question before the court. What the court was asked was whether her refusal to accept the doctors’ diagnosis and prognosis meant that she could not “make a decision for herself in relation to her future medical treatment”. On this, Mrs Justice Roberts, who heard the case, concluded that the answer was “Yes.”

“Absent that belief [in the doctors’ information], she cannot use or weigh that information as part of the process of making the decision,” the judgment stated. “This is a very different position from the act of making an unwise, but otherwise capacitous, decision.”

The tortured distinction drawn by Mrs Justice Roberts was that Thirumalesh lacked the “objective overview” of the situation which would validate any “subjective reasons” to make “unwise” choices. Here, Mrs Justice Roberts fell foul of the same hubris of which her doctors were guilty.

There was little evidence that Thirumalesh struggled to understand that her life was in danger of coming to an end, even if she disputed whether one of the causes was long Covid or the progression of the disease. But she still had faith that she would survive. Such faith might have flown in the face of all evidence, but faith such as this is a fundamental part of the human condition. Not every decision that a person makes has to be bound in rationality and evidence. Hope and faith can be enough.

JUDGMENTS such as this take a flawed view of what it means to be human. In pursuit of a supposed objective conception of the good, which sacrificed Thirumalesh’s hope in order to extinguish her pain, the Court of Protection took a nakedly utilitarian stance. The disease — and pain — that she was suffering from meant that she was not able to make the choice that she wished to make. But this put her in a catch-22: if she accepted her doctor’s prognosis, this entailed accepting her imminent death. Accepting the prognosis and having faith in her survival were mutually exclusive. The court’s judgment trapped her in this circularity.

Suffering from a terminal illness is devastating. But, given the impossibility of understanding what it means to live as another at the best of times, it is unfathomable to conceive of what it is like to live as someone facing their imminent death. Society and those caring for patients such as these should not give them false hope — but nor should they refuse to let them hope. The hospital trust was wrong to deprive Sudiksha Thirumalesh of this hope. The Court of Protection was cruel to sanction it.

Nicholas Reed Langen is a writer on legal and constitutional affairs, a former Re:Constitution Fellow (2021-22), and editor of the
LSE Public Policy Review. This piece is written in memory of his brother, Andrew Philip Langen, who died of can­cer, aged 30, on 25 September 2022.

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