'I want to die trying to live', say British teen. But her hospital thinks she’s better off dead
A future in which the right to life will be profoundly and inhumanely corrupted is on display in a dispute between a British teenager who wants to live and a UK hospital who wants her to die.
ST is a bright 19-year-old girl suffering from an extremely rare mitochondrial disease which causes progressive degeneration of all of her bodily systems – except her brain. After contracting Covid-19 in August last year, she collapsed and was admitted to an intensive care unit where she survives with the help of a ventilator and dialysis. Her condition has continued to deteriorate. Communication with her is possible but difficult.
Supported by a loving family, she is convinced that she could be cured with an experimental treatment in Canada. Her hospital says that this is delusional. Its doctors say that she has only days or weeks to live, months at most, and that the trans-Atlantic trip could kill her anyway. They want to remove her dialysis machine and transfer her to palliative care -- where she will die in a few days from kidney failure.
In a judgment released on Wednesday, Mrs Justice Roberts, of the Court of Protection, ruled in favour of a death sentence (University Birmingham NHS Foundation Trust v ST & Ors). Rejecting the opinion of two psychiatrists, the judge found that ST is mentally uncapable of making decisions for herself because she does not believe what hospital doctors say about her condition.
“In my judgment… ST is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors.”
ST knows that the experimental treatment might fail, but she declared clearly: “This is my wish. I want to die trying to live. We have to try everything”. The judge was being asked to determine whether her fully autonomous, well-informed, rational decision should be respected. In page after page after page, she parsed the meaning of “mental capacity”. Her reasoning was subtle and her distinctions were fine, but the long and the short of it was this: one cannot be of sound mind if one disagrees with expert doctors.
As one of the hospital’s doctors told the court, ST is unable to weigh up the pros and cons of “a dignified death”. As such he believes that she is suffering from a delusion which derives from a false reality in that she cannot contemplate her own death. “We need to write the menu for her to choose,” he said. “We need to offer treatments that are appropriate and available.”
The judge agreed.
“I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.”
As Andrea Williams, of the UK’s Christian Legal Centre, observed: “What can be more natural or rational for a seriously ill 19-year-old than to leave no stone unturned and to take every chance of survival?”
This is not all. ST and her family want to raise money to make her trip to Canada possible. But her case is under a “transparency order”, meaning that it cannot be reported in the newspapers. This prevents ST and her parents from giving any media interviews or making any appeal for funds. The transparency order was made at the request of the hospital without any reasons. Repeated requests to lift the order have been ignored.
Her family is distraught. “It is a matter of life and death for our daughter to raise money for treatment in Canada, so these arbitrary reporting restrictions are literally killing her,” they have said.
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A terrible precedent
The implications of this case should be alarming, even for people outside of the United Kingdom.
First, it treats the desire to live as delusional and a willingness to die as natural. ST, says the hospital is “actively dying”. This is absurd: we are all “actively dying”. Man is mortal and the grave is our ultimate destiny. But always and everywhere death has been regarded as the worst of evils. From ST’s words, “I want to die trying to live”, hang profound moral truths. Leaving religious convictions aside for the moment, no one is better off dead.
Assisted suicide is not legal (yet) in the UK, but the notion that some people are better off dead seems to be taking hold amongst doctors. In ST’s case, if she really is at death’s door, why not support her struggle for life until her strength fails her? It will only be a matter of days or weeks.
Second, it suggests that “autonomy” will only be respected if someone invokes it to ask for death, but not for life. In the UK, it seems, freedom of choice is a rachet that moves only in one direction, towards death.
Third, it implies that disagreement with a medical consensus is irrational and unworthy of respect. True, ST is hovering between life and death, but she wants to live. Moreover, she has kept confounding predictions of her imminent death. True, the Canadian treatment may not work, but the hospital doctors acknowledge that her disease is so rare that they cannot say that it won’t work. True, the doctors are experts, but after two years of medical advice Covid-19 experts, can anyone seriously believe that doctors are always right?
The message sent by this case is extremely sinister: if you disagree with government doctors, you are deluded. Doctors know best. Even when they want you to die.
Michael Cook is editor of Mercator
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