UK court rules teen with rare disorder incapable of making decisions about care despite begging to live

'I want to die trying to live' the 19-year-old told doctors

By Kristine Parks

A UK court has ruled a 19-year-old critically ill female patient with a rare disorder cannot make her own decisions about continuing her medical care, as her family battles her doctors' desire to stop treatment and pursue end-of-life care.

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 infant whose story drew global headlines in 2017. Charlie's parents lost a bid to bring him to the U.S. for an 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 previously being a student studying for her A-levels (short for advanced levels), the 19-year-old girl has spent the past year in the ICU, dependent on a ventilator and a feeding tube. She requires regular dialysis due to chronic kidney damage from her disease. "ST" is currently fighting the hospital to be allowed to travel to Canada for an experimental treatment to treat her disease.

The Christian Legal Centre, which is advocating for the patient, argues her case is different than Gard's because she is conscious and able to communicate and argue in her defense.

But her doctor believe "ST" is "actively dying" and has no hope of a cure to resume life outside intensive care. They are asking the court to end her dialysis treatments and pursue palliative care instead. The hospital told the court the 19-year-old is incapable of making decisions about her future medical care because she is under the "delusion" that her death is not imminent.

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

"This is my wish. I want to die trying to live. We have to try everything," she told clinicians, according to court documents.

Her family has spent their entire life savings to treat the girl, the Christian Legal Centre said, and wants to go to the public to raise funds for the expensive treatment, but cannot due to a "transparency order" requested by the hospital which bars reporting any information which might 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 for survival, but we have also been cruelly gagged from being able to speak about her situation. We are not allowed to ask people for prayers or for help which she desperately needs. 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 via legal representation.

In court this week, a judge determined the teen "is able to communicate reasonably well with her doctors with assistance from her mother and, on occasion, speech therapists." Two psychiatrists assessed the teen was capable of making decisions about her future care for herself.

However, the judge said that, "ST" was mentally incapable of making decisions for herself because "she does not believe the information she has been given by her doctors." The judge ruled that decisions about ST's further care should be determined by the Court of Protection based on an assessment of her best interests.

"We are shocked to be told by the judge that our daughter does not have capacity to make decisions for herself after all the experts have said that she does. We are very distressed by this injustice, and we hope that, by Jesus’s grace, this will be corrected on appeal," the family of the patient said. 

Andrea Williams, the Chief Executive of Christian Legal Centre, blasted the transparency order and called the case "profoundly disturbing."

"This profoundly disturbing case demonstrates the urgent need for an overhaul into how end-of-life decisions are made in the NHS and the Courts," she said.

"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? 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," she said in a statement.

The NHS did not respond to a request for comment.

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UK court rules teen with rare disorder incapable of making decisions about care despite begging to live