A 19-year-old woman with a rare disease has died during a legal fight to circumvent a ruling that she was not competent to make decisions about her care, despite her desire to go abroad for experimental treatment.
The woman, named only as “ST” for legal reasons, died from cardiac arrest late on September 12. She had been dying from a progressively degenerative mitochondrial disorder but had hoped to travel to Canada to take part in medical trials for nucleotide therapy to help her survive.
“I want to die trying to live,” the woman told a psychiatrist evaluating her. “We have to try everything.”
On August 25 a judge ruled that the “alert and conscious” adult woman did not have mental capacity because she disagreed with NHS doctors who wanted to put her on a death pathway.
The Court of Protection concluded that the 19-year-old student could not be trusted to make decisions for herself because she distrusted the medical advice of doctors who wish to move her from intensive care to palliative care.
After her death, her family released a statement through solicitors.
“The disease ST faced was immense, but she and we refused to give up hope, no matter how small that hope was,” said the family, who cannot be named until legal restrictions are lifted.
“ST was a committed Christian and firmly believed that life is the most precious gift we have from God. Every family faced with such a challenge and tragedy should have the opportunity to leave no stone unturned when trying to save the life of their child.”
“Instead in our hour of need, when we needed it most, we were taken to court and had severe reporting restrictions placed upon us. We were essentially given a choice: give up and let us prepare your daughter for death, or have your lives dismantled and torn apart if you wish to resist us,” the family continued. “We chose to give up everything for our daughter.”
Catholic bioethicists have denounced the court’s decision, however, as a “lethal form of paternalism”.
ST’s preparations for her A-Levels were interrupted last year when she was admitted to hospital due to a respiratory arrest, while also testing positive for COVID-19.
Since then she had been unable to leave the intensive care unit, being completely reliant on a ventilator to breathe, a tube to receive nutrition, and a haemodialysis machine.
The NHS hospital trust caring for ST argued that her progressive mitochondrial illness had damaged her organs to such an extent that she did not have long left to live and proposed moving her to “a treatment plan of palliative care”, which would involve giving ventilation but withdrawing haemodialysis.
ST had instructed her lawyers to fight to keep her alive and to obtain permission for her to travel to Canada or North America in the hope of taking part in clinical trials for experimental nucleoside treatment which 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.”
Mrs Justice Roberts ruled however that ST was “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”.
She 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.”
According to the Anscombe Bioethics Centre, the Oxford-based institute serving the Catholic Church in the UK and Ireland, the decision of the court not only silenced ST but also denied her “the right to litigate against the decision to take away her voice”.
A spokesman said the judge had “taken ST’s belief in the possibility of her surviving her illness and in receiving experimental treatment to be signs that ST refuses to believe the information given to her by her doctors”.
“As she does not accept their prognosis, her ability to make decisions is taken to be impaired,” the spokesman said.
“The fact that people believe different things is not enough to show that they do not have capacity to decide things for themselves.
“Someone can make a mistaken decision, or one that is objectively unreasonable, or unwise, or even perverse or a decision that is harmful to themselves or unfair to others, and yet have capacity to make that decision. This is why we can hold people responsible for the decisions they make.
“To make decisions for people when they could make decisions for themselves is paternalism. It is treating adults as if they were children.
“This ethical truth is also reflected in the Mental Capacity Act which emphasises that someone must not ‘be treated as unable to make a decision merely because he makes an unwise decision’.”
The spokesman continued: “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. We may well consider her decision unwise and doctors are not required, given limited resources, to provide any and all treatments that patients may request.”
He added: “In this case, a vulnerable patient’s disagreement with her doctors is being used against her as a means not only to take away her voice but further to deny her the right to litigate against the decision to take away her voice.
“Most disturbingly of all, 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.”
ST’s case has similarities to the cases of Charlie Gard, Alfie Evans, Pippa Knight, and Alta Fixsler, in which judges ruled against the parents’ wishes and permitted doctors to withdraw life-sustaining treatment.
ST’s case is unique because she was an adult able to communicate her wish to continue receiving dialysis and other forms of intensive care.
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”.
According to advice put before the Court, there was no cure to enable the teenager to resume her life outside of her clinical setting.
The Christian Legal Centre criticised the judge’s decision as “effectively condemning her to death” while her family issued a statement saying that they are “very distressed by this injustice” and will be issuing an appeal.
Both ST and her family objected to the ruling and had hoped to appeal it.
There are strict rules against reporting identifiable information about ST, her family, or the hospital involved due to a court-imposed transparency order dating to March. The order came at the request of the unnamed NHS trust, the Christian Legal Centre reported.
ST’s family has said they are legally prevented from public comment and media interviews about her situation. They have not been allowed to ask for prayers or raise money to pursue extraordinary treatment, estimated to cost about $1.9 million.
The family will seek to overturn reporting restrictions so that their daughter can be identified by name in public.
“We are not out for revenge but we want justice for our daughter and for other victims of this cruel system,” the family said. “ST found herself trapped in a medical and legal system governed by a toxic paternalism which condemned her for wanting to live. She was in a race against time to escape ‘the system’ and the certain death it wished to impose on her. The system has now succeeded, but this is not the end.”
“Day after day in the intensive care ward we and ST had to exist and keep going in an environment that had given up on her right and wish to live. Death we were told was the only remedy and the only hope,” the family added. “In such an environment, it meant we were afraid to leave her bedside and were therefore forced to give up our livelihoods to the point we now do not know how we will pay for her funeral.”
The family had no legal aid and was paying its own lawyers until the Christian Legal Centre offered pro bono help. They are still paying legal fees and now must pay off their debts and pay for ST’s funeral, the U.K. newspaper The Daily Mail reported.
Now that the woman has died, her family voiced serious concern about how the medical and legal systems acted.
“Because ST and our family refused to give up hope, doctors said that ST could not possibly have mental capacity to make decisions about her health,” the family statement said. “Despite the fact that two court-appointed expert psychiatrists and the Office of the Public Guardian all agreed that ST did have full mental capacity, the court declared her to have no capacity either to make decisions about her health or even to instruct her own lawyers. From this case we have learned that if you disagree with the NHS, you must for that reason alone be considered delusional. This has been deeply disturbing and traumatic to witness firsthand happening to someone you love.”
The family called for urgent change to the health system. They were joined by Andrea Williams, chief executive of the Christian Legal Centre.
“The case of ST is not just about justice for her and her family but ensuring that justice in such cases is done with full transparency and proper scrutiny in this nation,” Williams said in a statement. “ST was truly a courageous and beautiful soul. She died advocating for the preciousness of life and importance of justice.”
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