In a recent UK court ruling, a 19-year-old critically ill female patient, referred to as “ST” to protect her anonymity, has been deemed incapable of making decisions about her own medical care. ST suffers from a rare genetic mitochondrial disease, similar to the case of Charlie Gard, which gained worldwide attention in 2017. While ST’s condition has left her dependent on a ventilator, feeding tube, and regular dialysis, she and her family are fighting to pursue experimental treatment in Canada, hoping for a chance at extended life.
The Christian Legal Centre is advocating for ST, arguing that her case differs from Charlie Gard’s because she is conscious and able to communicate her wishes. Despite the hospital’s belief that she is “actively dying” with no hope of a cure, ST remains determined to fight for her life. She expressed her wish to “die trying to live” and insists on exploring every possible avenue for treatment.
ST’s family has spent their entire life savings on her medical care, and they are eager to raise funds for the expensive Canadian treatment. However, they are hindered by a “transparency order” imposed by the hospital, which restricts any public reporting that could identify ST, her family, or the medical facility.
In court, it was determined that ST can communicate reasonably well with her doctors, often with assistance from her mother and speech therapists. Two psychiatrists also assessed her as capable of making decisions regarding her future care. Nevertheless, the judge ruled that ST lacked the mental capacity to make decisions because she does not believe the information provided by her doctors. The court decided that further decisions about her care should be made by the Court of Protection, focusing on her best interests.
ST’s family expressed shock and distress at the ruling, believing it contradicted the expert opinions that affirmed her capacity to make decisions. They hope for a correction on appeal, seeking justice for their daughter’s plight.
Andrea Williams, the Chief Executive of Christian Legal Centre, criticized the transparency order and emphasized the urgent need for a reevaluation of how end-of-life decisions are made in the NHS and the courts. She highlighted the natural instinct of a seriously ill 19-year-old to explore every chance of survival.
The NHS did not respond to requests for comment regarding the case, leaving the public with lingering questions about the legal and ethical complexities surrounding end-of-life decisions for patients like ST.
