It is hard to imagine something more chilling than knowing your doctors want to withdraw the treatment that is keeping you alive. Yet that is exactly what has happenedto a nineteen-year-old woman, ST, who died on Tuesday 12 September.
As ST’s doctors had decided that her condition was hopeless, they asked the Court of Protections for approval to begin a “palliative care plan” that would stop the dialysis that was keeping ST alive. What is worse, the court ruled that ST’s disagreement with her doctors, meaning her wish to continue receiving dialysis and seek experimental treatment abroad, was a sign that she lacked mental capacity to make decisions for herself. Despite being an alert and conscious adult, her wishes to continue living could therefore be safely ignored by the NHS Trust.
ST was an ordinary sixth-former preparing for her A-Levels when her life was interrupted last year by a respiratory arrest, whilst also testing positive for COVID, causing her to be admitted to hospital. She was unable to leave the intensive care unit for just over a year and was completely dependent on a ventilator to breathe, a tube to receive nutrition, and a haemodialysis machine.
The underlying cause of her condition was a rare form of mitochondrial depletion syndrome which has been identified in only one hundred cases globally. Although there is no known treatment for it, clinical trials of experimental forms of nucleoside treatment are being developed in Canada and the US. ST wanted to live long enough to find out if she could enter one of these trials.
However, the severe reporting restrictions imposed by the Court of Protections meant that the identity of ST, her family, and of her NHS Trust could not be revealed. ST’s family said in a statement via their solicitors: “The UK has no expertise in treating the condition but three hospitals in America and Canada had offered to treat ST. Because of the court proceedings, however, ST was blocked from going there and because of the gagging orders we could not fundraise to finance her treatment and transport.”
There are three reasons why we should be concerned about this disturbing case.
Firstly, there is the terrible, early death of a young woman, at the end of a prolonged period suffering in hospital, accompanied by her faith and by the near-constant presence of her family, for whom our prayers should be offered. The crippling legal expenses have meant that the family have asked for donations to help pay for the cost of her funeral and for their remaining debts to lawyers.
Secondly, ST’s case is similar to other cases, widely reported in the media, of Charlie Gard, Alfie Evans, Pippa Knight, and Alta Fixsler, because in each of them a court permitted an NHS Trust to withdraw life-sustaining treatment, knowing fully well that it would hasten their patient’s death. The courts therefore gave their approval to a form of non-voluntary passive euthanasia, passive because it involves the withdrawal of life support, and non-voluntary because in each case it was against the wishes of the parents. Besides the injustice of this, we can only imagine the added suffering that it must cause the families of those whom their doctors have intentionally allowed to die.
But, thirdly, unlike those others, ST was not a child – she was fully capable of communicating what she wanted. This is most disturbing aspect of how ST has been treated. Her ability to make decisions for herself, indeed her very voice, was denied her by a form of lethal paternalism.
None of the doctors who interacted with or treated her claimed that her condition had affected her brain, and the judge “accepted that ST does not suffer from any recognised psychiatric or psychological illness.” And yet, because the wording of s.2(1) of the Mental Capacity Act 2005 does not require a formal diagnosis of an impaired mind or brain, “it is sufficient if the court finds some form of psychological or other impairment which impacts on ST’s ability to take a decision.” The judge therefore took ST’s belief in the possibility of her surviving her illness and in receiving experimental treatment to be signs that ST refused to believe the information given by her doctors. As she did not accept their prognosis, her ability to use the information given to her in making decisions was taken to be impaired. But she was capable of using that information; she just disagreed about what should be done next.
ST was therefore denied even the dignity of being treated like a responsible adult, capable of choosing from her treatment options for herself, even if her choices may be judged unwise or mistaken by others. The Mental Capacity Act itself recognises very clearly that someone must not “be treated as unable to make a decision merely because he makes an unwise decision”. Thus to interpret a disagreement with medical opinion as a sign of mental impairment sets a dangerous precedent. No doubt we will see the implications of this lethal paternalism in future cases.
(Mehmet Ciftci is Public Bioethics Fellow at the Anscombe Bioethics Centre)
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