A UK court has ruled a critically ill 19-year-old female patient with a rare disorder cannot make her own decisions about continuing her medical treatment, as her family opposed her doctor’s wishes to stop treatment and continue end-of-life care.
The teenager, whose identity has not been released as “ST” by the court, has a rare genetic mitochondrial disease that is deteriorating, according to court documents.
The situation is similar to Charlie Gard, the baby whose story made global headlines in 2017.
Charlie’s parents lost a bid to bring him to the US for trial treatment for his critical condition and he died after the hospital withdrew life-saving care after months of high-profile legal battles.
Despite previously being a student studying for her A levels (short for advanced level), the 19-year-old has spent the past year in ICU, dependent on a ventilator and feeding tube.
He requires regular dialysis due to chronic kidney damage from his disease.
“ST” is currently fighting the hospital to be allowed to go to Canada for experimental treatment to treat his illness.
The Christian Legal Center, which defended the patient, argued his case was different from Gard’s because he was conscious and able to communicate and argue in his defense.
A UK court has ruled a critically ill teenager, called “AT,” with a rare disorder cannot make his own decisions about continuing his medical treatment.Getty Images
But his doctor believes “ST” is “actively dying” and has no hope of a cure to continue life outside of intensive care.
They asked the court to end his dialysis treatment and instead continue with palliative treatment.
The hospital told the court that the 19-year-old was incapable of making decisions about his future medical treatment because he was under the “delusion” that his death would not happen.
The teenager, who comes from a strong Christian family, admitted he realized the treatment might not help prolong his life but wanted to keep fighting.
“This is my wish. I want to die trying to live. We have to try everything,” he told the doctor, according to court documents.
Her family had spent their entire life savings treating the girl, the Christian Law Center said, and wanted to go public to raise funds for the expensive treatment, but could not because of a “transparency order” requested by the hospital that prevented reporting. any information that might identify “ST”, his family, or the hospital.
The girl’s family described the long battle with the hospital as “years of constant torture” for them.
“Not only are we worried about our beloved daughter’s fight to survive, but we have also been cruelly silenced by not being able to talk about her condition. We are not allowed to ask people for prayers or help that he desperately needs. It’s a matter of life and death for our daughter to raise money for treatment in Canada, so this arbitrary reporting restriction is literally killing her,” they said through legal representation.
In court this week, a judge ruled the teenager “can communicate well with his doctor with the help of his mother and, at times, a speech therapist.”
Two psychiatrists assessed the teenager as capable of making decisions about his future care for himself.
AT’s family is fighting against his doctor’s wish to continue end-of-life treatment.Getty Images/iStockphoto
However, the judge said that, “ST” was mentally incapable of making decisions for himself because “he did not believe the information that his doctor had given him.”
The judge ruled that the decision on ST’s further care should be determined by the Court of Protection based on an assessment of his best interests.
“We were shocked to be told by the judge that our daughter did not have the capacity to make decisions for herself after all the experts said she did.
We are very distressed by this injustice, and we hope, with the grace of Jesus, this will be corrected in the appeal,” said the patient’s family.
Andrea Williams, Chief Executive of the Christian Legal Center, condemned the transparency order and called the case “deeply disturbing.”
“This very worrying case shows the urgent need to overhaul how end-of-life decisions are made in the NHS and the Courts,” he said.
“What is more reasonable or rational for a 19-year-old child who is terminally ill than not to give up and take every chance to survive? ST wanted to tell his story to the world to try and get further treatment but was prevented from doing so by the ironically named Court of Protection,” he said in a statement.
The NHS did not respond to requests for comment.
Categories: Trending
Source: thtrangdai.edu.vn/en/
