Teen Fights NHS Trust For Trying To Withdraw Vital Care
Teen Fights NHS Trust For Trying To Withdraw Vital Care: A teenage girl with a rare genetic condition is fighting the government in the United Kingdom, which has asked the Court of Protection for permission to remove the treatment she needs to stay alive.
The 19-year-old girl, referred to in court documents as ST, suffers from a rare genetic mitochondrial disease, which can affect how the body’s cells produce energy. While ST requires consistent hospital attention due to chronic muscle weakness and kidney damage, she is conscious and capable of communicating.
According to a Thursday statement from the Christian Legal Centre, an organization that offers legal support to people of faith, the National Health Service Trust has asked the Court of Protection to approve a “palliative care plan” for ST. The plan would involve stopping the dialysis treatment ST needs to survive and making no attempt to resuscitate her.
The NHS is England’s publicly funded healthcare system.
The trust’s argument is that ST is “actively dying” due to her condition, and the courts should determine the future of her care. While ST would like to undergo treatments to sustain her life, including clinical trials of nucleoside therapy in Canada, the hospital doctors argued that the girl’s inability to accept her death is a sign of “delusion.
In a judgment released last week, Mrs. Justice Roberts acknowledged that the teenager showed an “overwhelming desire to live. However, the judge still ruled that the court should make decisions about the girl’s treatment.
“ST is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors,” the judge wrote. “Absent that belief, she cannot use or weigh that information as part of the process of making the decision.”
Even though the teenager authorized her parents in November 2022 to make decisions on her behalf if she became too sick, the hospital asked the Court of Protection to set that authorization aside in February 2023. According to the hospital, ST did not have the mental capacity to sign the document granting her parents this power.
The teenager’s Christian parents have spent their life savings to hire attorneys to help them throughout the legal proceedings with the NHS. According to the girl’s loved ones, ST is a “fighter” who was studying for her “A-Levels” (the equivalent to an Advanced Placement exam in the United States) before she contracted COVID-19 in August 2022.
ST has told her doctors that she wants to do everything to extend her life, stating, “I want to die trying to live.”
The parents want to raise the necessary funds to allow ST to participate in clinical trials in Canada that they believe could sustain their daughter’s life. The trials are expected to start in Canada later this year.
Due to the court’s March 2023 “Transparency Order,” however, the parents are prohibited from reporting any information that could reveal their identities, as well as the names of ST and other family members. In April 2023, ST’s parents made an urgent application to reconsider the order so they could raise the funds to pay for their daughter’s treatment. The court has not had time to consider the application despite holding three hearings since the parents filed it.
The parents of a 19-year-old girl in Canada have been denied access to treatment due to arbitrary reporting restrictions. The family is anxious about their daughter’s survival and the lack of support she needs.
The judge’s decision to deny her decision-making is distressing, as two psychiatric experts have stated that she is capable of making decisions.
CLC Chief Executive Andrea Williams called the case “profoundly disturbing” and called for an urgent inquiry into the practices of the Court of Protection and the Family Division.
The case resembles Charlie Gard’s case, where a British baby with a rare genetic condition died after a legal dispute over treatment in the US.