Denver, Colo., Sep 6, 2023 / 16:13 pm (CNA).
A 19-year-old U.K. woman with a rare disease wants to seek experimental treatment abroad, but a judge has ruled that she is not competent to make decisions about her treatment. The ruling could result in withdrawing treatment, following her doctors’ wishes.
The woman, known anonymously as “ST” for legal reasons, is dying from a progressively degenerative mitochondrial disorder, The Telegraph reported. Though ST has wanted to go to Canada to pursue experimental treatment, a judge agreed with an unnamed National Health Service trust’s doctors and ruled that she is unable to make decisions for herself.
However, the medical professionals in charge of her treatment maintain that she is now or will soon be in the final stage of her life and is “actively dying.” The NHS trust has 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.
The woman’s family objected to the ruling about ST’s alleged incapacity and other legal conditions blocking their ability to rally public support for her.
“We are shocked to be told by the judge that our daughter does not have the capacity to make decisions for herself after all the experts have said that she does,” the woman’s family said in a statement via solicitors. “We are very distressed by this injustice, and we hope that, by Jesus’ grace, this will be corrected on appeal.”
In March a court-imposed transparency order placed strict rules on reporting identifiable information about ST, her family, or the hospital. The order came at the request of the unnamed NHS trust, the Christian Legal Centre reported.
ST’s family said they are legally prevented from public comment and media interviews about her situation and are not allowed to ask for prayers or raise money to pursue extraordinary treatment.
Her case has the attention of the Christian Legal Centre, an advocacy group that has been active in other U.K. controversies regarding the treatment of the seriously ill.
“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?” Andrea Williams, chief executive of Christian Legal Centre, said in a statement.
“ST has wanted to tell her story to the world in order to try and access further treatment but has been prevented from doing so by the ironically named Court of Protection,” Williams said.
Last year, ST had been studying for her A-level standardized school exams. However, her condition declined after she caught COVID-19 in August 2022. Since then she has been in intensive care and on an artificial respirator, eating through a feeding tube and undergoing dialysis.
ST is conscious and able to speak. Her disease does not affect brain functioning, though she suffers health problems such as impaired sight, hearing loss, chronic muscle weakness, bone disease, and chronic lung and kidney damage.
She hopes to take part in medical trials for nucleotide therapy to help her survive.
“I want to die trying to live,” ST told a psychiatrist evaluating her. “We have to try everything.”
The two psychiatrists the hospital tasked with assessing ST ruled that she is free from mental health issues and has the mental capacity to decide for herself, the Telegraph reported.
In an Aug. 25 court judgment, Justice Jennifer Roberts of the High Court of England and Wales ruled that ST lacks the capacity to instruct her lawyers and said that the Protective Court should decide on her best interests. In Roberts’ view, 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.”
Citing the evidence presented before the court, the judge ruled it probable that ST shows 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.”
In November 2022, the woman granted conditional power of attorney to her parents to allow them to make decisions on her behalf if she became mentally incapacitated. In February, however, the hospital asked the Court of Protection to waive the document, arguing that she did not have the mental capacity to sign it.
“This has been a year of continuous torture for the family,” the woman’s family said in their statement. “Not only are we anxious about our beloved daughter’s fight for survival, but we have also been cruelly gagged from being able to speak about her situation.”
“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 said.
Williams, of the Christian Legal Centre, said the case is “profoundly disturbing” and shows the “urgent need” to overhaul how the NHS and the courts handle end-of-life decisions.
“We have been calling upon the government for some time now to urgently set up a public inquiry into the practices of the Court of Protection and the Family Division surrounding end-of-life cases after a series of disturbing and upsetting cases,” she said.
The U.S.-based National Catholic Bioethics Center on its website summarizes Catholic teaching on end-of-life issues. A patient may forgo “extraordinary means” of preserving life that does not offer a reasonable hope of benefit, may entail an “excessive burden,” or impose “excessive expense” on the family or community. At the same time, Catholic teaching stresses that the patient or his or her proxies are responsible for the decision to withdraw treatment. Catholicism does not reject the pursuit of experimental treatments.
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