Denver, Colo., Sep 15, 2023 / 17:10 pm (CNA).
A 19-year-old U.K. 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.
“I want to die trying to live,” the woman told a psychiatrist evaluating her. “We have to try everything.”
The woman, known anonymously as “ST” due to legal restrictions on reporting, died from cardiac arrest late on Sept. 12. She had been dying from a progressively degenerative mitochondrial disorder. She had hoped to travel to Canada to take part in medical trials for nucleotide therapy to help her survive.
However, legal challenges obstructed this effort. On Aug. 25 a judge agreed with an unnamed National Health Service trust’s doctors and ruled that she was unable to make decisions for herself.
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.”
Before her death, ST was conscious and able to speak. She had done well in school before her health declined after she caught COVID-19 in August 2022. Her disease did not affect brain functioning, though she suffered health problems such as impaired sight, hearing loss, chronic muscle weakness, bone disease, and chronic lung and kidney damage.
For more than a year, she had been in intensive care. She breathed using an artificial respirator, ate through a feeding tube, and underwent dialysis.
The two psychiatrists the hospital tasked with assessing ST ruled that she was free from mental health issues and had the mental capacity to decide for herself.
However, the medical professionals in charge of her treatment maintained that she was approaching, or had already begun, the final stage of her life and was “actively dying.” The NHS trust had asked the court to approve a palliative care plan for the woman that would remove her from dialysis and thus result in death by kidney failure in a few days.
In an Aug. 25 court judgment, Justice Jennifer Roberts of the High Court of England and Wales ruled that ST lacked the capacity to instruct her lawyers and said that the Protective Court should decide on her best interests. In Roberts’ view, ST was “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.”
Citing the evidence presented before the court, the judge ruled it probable that ST showed a “complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information,” due to “the result of an impairment of, or a disturbance in the functioning of, her mind and brain.”
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.”