In a recent development from the UK, a 19-year-old young woman who is critically ill due to a rare disorder has been at the center of a legal battle involving her family and medical professionals. The court has ruled that she cannot independently make decisions about her ongoing medical treatment. The teenager, referred to as “ST” to protect her identity, suffers from a rare genetic mitochondrial disease that is progressively degenerative, as outlined in official court documents. This situation draws parallels to the case of Charlie Gard, an infant whose plight gained global attention in 2017. Tragically, Charlie passed away following a legal struggle involving his parents’ efforts to pursue experimental treatment in the US.
Despite her previous status as a student preparing for A-levels, “ST” has spent the past year under intensive medical care, relying on a ventilator and a feeding tube in the ICU. Her condition has necessitated regular dialysis due to kidney damage caused by the disease. Seeking an experimental treatment in Canada to combat her ailment, “ST” is presently engaged in a legal fight with the hospital.
The Christian Legal Centre is representing “ST” and arguing that her case distinguishes itself from Charlie Gard’s, as she is conscious, capable of communication, and able to advocate for her own position. Her medical team, however, believes that she is in an “actively dying” state and that recovery outside of intensive care is unlikely. They have petitioned the court to discontinue dialysis and shift toward palliative care. The hospital contends that “ST” lacks the capacity to make decisions about her medical future, as she is under the misconception that her death is not imminent.
“ST,” hailing from a deeply religious family, has acknowledged that the experimental treatment might not significantly prolong her life, yet she remains steadfast in her desire to persevere. According to court records, she expressed, “This is my wish. I want to keep trying to live. We must exhaust all possibilities.”
The family has depleted their life savings in the pursuit of treatment for “ST,” but due to a “transparency order” issued by the hospital, they are prohibited from soliciting public support or donations. The order prevents any information that could potentially identify “ST,” her family, or the medical facility from being disclosed.
For the family, this protracted battle with the hospital has been a year of immense anguish. They expressed their distress, saying, “We are not only consumed by worry for our beloved daughter’s fight for survival, but we are also unfairly silenced from seeking prayers or assistance that she so desperately needs. Her life hangs in the balance, and these arbitrary reporting restrictions are gravely harming her chances of securing the vital funds for treatment in Canada.”
In a recent court session, a judge determined that “ST” can effectively communicate with medical professionals, often with assistance from her mother and occasionally speech therapists. Two psychiatrists assessed her ability to make decisions about her future care and found her competent in that regard.
Nonetheless, the judge concluded that “ST” lacks the mental capacity to make decisions on her own behalf, citing her disbelief in the information provided by her doctors. As a result, the court ruled that decisions about her future care must be entrusted to the Court of Protection, which will assess her best interests.
The family responded to this verdict with shock and disappointment. They conveyed, “We are taken aback by the judge’s assertion that our daughter is incapable of making decisions, despite the consensus from experts indicating otherwise. This seems deeply unfair, and we hope that, with the grace of God, justice will be restored through the appeals process.”
Andrea Williams, Chief Executive of the Christian Legal Centre, criticized the transparency order and labeled the case “deeply unsettling.” She emphasized the urgent need for reform in how end-of-life decisions are approached within the healthcare system and legal framework.
Williams expressed, “What could be more instinctive or reasonable for a seriously ill 19-year-old than to explore every avenue and seize every opportunity for survival? ST has been eager to share her story with the world to seek further treatment, but this opportunity has been denied by the ironically named Court of Protection.”