UK teenager wants to fight for her life, but court denies her wish

LIVERPOOL, England -- A Catholic bioethics institute has criticized a court for denying an "alert and conscious" teenager the legal right to fight a move to put her on end-of-life care against her will.

The Anscombe Bioethics Center, an Oxford-based institute serving the Catholic Church in the United Kingdom and Ireland, said the ruling by the Court of Protection in the case of a woman known only as "ST" for legal reasons represented a "lethal form of paternalism."

The 19-year-old student has been in an intensive care unit in an English National Health Service hospital, which also cannot be named, since last year after she suffered respiratory arrest while infected with COVID-19.

She also suffers a progressive mitochondrial illness and is now entirely reliant on a ventilator to breathe, a tube to receive nutrition and a hemodialysis machine.

Doctors at the hospital want to move her from intensive care to palliative care, in which the woman will be sedated and denied hemodialysis, resulting in her death from kidney failure within days. Hemodialysis is a procedure that uses a dialysis machine and a special filter called an artificial kidney, or a dialyzer, to clean one's blood when the kidneys are not working normally.

The patient has instructed her lawyers to oppose the plan and to press for permission to go to either the United States or Canada to take part in clinical trials for experimental "nucleoside bypass therapy," a treatment for her mitochondrial illness that might give her an improved chance of survival.

She told a psychiatrist who examined her: "This is my wish. I want to die trying to live. We have to try everything."

But in a written judgment issued at the end of August, Justice Roberts, the judge, ruled that ST is "unable to make a decision for herself in relation to her future medical treatment … because she does not believe the information she has been given by her doctors."

The judge concluded: "In my judgment, and based upon the evidence which is now before the court, 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."

The court will soon consider the application to place ST on palliative care, with the patient represented by the Official Solicitor, a state appointment, rather than by her own lawyers.

Anscombe Bioethics Center said in a Sept. 4 statement that the ruling denies ST not only the right to be heard but also "the right to litigate against the decision to take away her voice."

"To make decisions for people when they could make decisions for themselves is paternalism. It is treating adults as if they were children," the statement said.

"The judge has taken a perilous step in interpreting ST's disagreement with her doctors as tantamount to an inability to use the information she has been given about her condition. She can use it. She just disagrees with it," it read.

The statement added: "Her wish to continue to receive life-sustaining treatment, such as dialysis, is not only being ignored, but that very wish is being seen as a reason to deny her dignity as a mentally capable adult. This is a lethal form of paternalism."

None of the doctors who interacted with ST or treated her claimed that her condition had affected her brain, and the judge "accepted that ST does not suffer from any recognized psychiatric or psychological illness."