UK court rules critically ill teen seeking experimental treatment cannot make own medical decisions

A UK court has ruled that a critically ill 19-year-old patient with a rare disorder cannot make her own decisions about continuing her medical care, as her family fights her doctors’ desire to stop treatment and seek care. at the end of his life.

The teen, whose identity has been anonymized as “ST” by the court, has a rare genetic mitochondrial disease that is progressively degenerative, according to court documents.

Her condition is similar to that of Charlie Gard, the baby whose story grabbed world headlines in 2017.

Charlie’s parents lost an attempt to bring him to the US for experimental treatment for his critical condition and he died after the hospital withdrew life-saving care after a months-long high-profile legal battle.

Despite being a student studying for her A levels (short for advanced levels), the 19-year-old spent the last year in ICU, dependent on a ventilator and a feeding tube.

He requires regular dialysis due to chronic kidney damage caused by his illness.

“ST” is currently fighting the hospital to allow him to travel to Canada to receive an experimental treatment to treat his illness.

The Christian Legal Centre, which is defending the patient, argues that her case is different from Gard’s because she is conscious and able to communicate and argue on her behalf.

The UK court has ruled that a seriously ill teenager, named ‘AT’, with a rare disorder, is unable to make her own decisions about continuing her medical care.Getty Images

But his doctor believes that “ST” is “actively dying” and has no hope of a cure to resume life outside of intensive care.

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They ask the court to end his dialysis treatments and instead seek palliative care.

The hospital told the court that the 19-year-old is unable to make decisions about her future medical care because she is under the “delusion” that her death is not imminent.

The teenager, who comes from a strong Christian family, confessed that she realizes that treatment may not help her prolong her life, but she wants to keep fighting.

“This is my wish. I want to die trying to live. We have to try everything,” he told doctors, according to court documents.

Her family has spent all of their life savings to treat the girl, the Christian Legal Center said, and wants to go to the public to raise funds for the expensive treatment, but can’t because of a “transparency order” requested by the hospital. which prohibits reporting. any information that could identify “ST”, her family or the hospital.

The girl’s family described the long battle with the hospital as “a year of continuous torture” for them.

“Not only are we anxious about our beloved daughter’s fight to survive, but we have also been cruelly blocked from speaking about her situation. We are not allowed to ask people for prayers or help that they desperately need. “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 through legal representation.

This week in court, a judge found that the teenager “is able to communicate reasonably well with her doctors with the help of her mother and, on occasion, speech therapists.”

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Two psychiatrists assessed that the adolescent was capable of making decisions about her future care.

AT's family is fighting his doctors' desire for end-of-life care.AT’s family is fighting his doctors’ desire for end-of-life care. Getty Images/iStockphoto

However, the judge said “ST” was mentally incapable of making decisions for herself because “she does not believe the information her doctors have given her.”

The judge ruled that decisions about ST’s future care should be determined by the Court of Protection based on an assessment of his best interests.

“We are surprised that the judge tells us that our daughter does not have the capacity to make decisions for herself after all the experts have said that she does.

“We are very distressed by this injustice and hope that, by the grace of Jesus, this will be corrected on appeal,” the patient’s family said.

Andrea Williams, executive director of the Christian Legal Center, criticized the transparency order and called the case “deeply disturbing.”

“This deeply disturbing case demonstrates the urgent need for a review of how end-of-life decisions are made in the NHS and the courts,” he said.

“What could be more natural or rational for a seriously ill 19-year-old than to spare no effort and take advantage of every chance of survival? ST has wanted to tell his story to the world to try to access more treatment, but the ironically named Court of Protection has prevented him from doing so,” he said in a statement.

The NHS did not respond to a request for comment.

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