A 19-year-old critically ill female patient in the UK is at the center of a legal battle between her family and doctors over her medical care. The teenager, identified as “ST” by the court to protect her identity, suffers from a rare genetic mitochondrial disease. Similar to the case of Charlie Gard in 2017, ST's family is fighting against her doctors' desire to withdraw treatment and pursue end-of-life care.
ST has been dependent on a ventilator and a feeding tube for the past year and requires regular dialysis due to chronic kidney damage caused by her degenerative disease. However, she is determined to continue fighting and has expressed her wish to travel to Canada for an experimental treatment that could potentially treat her condition. 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.
On the other hand, her doctors believe that ST is "actively dying" and has no hope of a cure. They have requested the court to end her dialysis treatments and provide palliative care instead. The hospital claims that ST is incapable of making decisions about her future medical care due to being under the “delusion” that her death is not imminent.
ST's family, who come from a strong Christian background, supports her desire to keep fighting. They have spent their entire life savings on her treatment and wish to raise funds from the public for the expensive treatment in Canada. However, a "transparency order" requested by the hospital prohibits them from sharing any information that might identify ST, her family, or the hospital.
A judge recently ruled that ST is able to communicate effectively with her doctors, even with assistance, and two psychiatrists assessed her capability to make decisions about her future care. However, the judge ultimately determined that ST is mentally incapable of making decisions for herself because she does not believe the information provided by her doctors. As a result, the judge ruled that decisions about ST's further care should be made by the Court of Protection in her best interests.
The family expressed shock and distress over the judge's ruling, stating that all the experts had previously confirmed ST's capacity to make decisions. They are hopeful that this decision will be corrected on appeal.
Andrea Williams, the Chief Executive of Christian Legal Centre, criticized the transparency order and called the case "profoundly disturbing." She emphasized the need for an overhaul in the decision-making process for end-of-life care cases within the NHS and the courts.
The NHS did not respond to a request for comment regarding the case.