(CT) A Christian family and an NHS trust are locked in a legal fight over the treatment of a teenager who suffers from a rare genetic condition.
The 19-year-old girl, named only as ST, suffers from a mitochondrial disease and is dependent on regular dialysis, but she is fully conscious and wishes to be allowed to go to Canada for experimental treatment.
The NHS hospital treating her argues that her condition is deteriorating and that she is “actively dying”. It is asking the Court of Protection for permission to end medical treatment and shift to end-of-life care.
The Christian Legal Centre (CLC), which is supporting the teenager and her family in the case, says that switching to palliative care “would mean she is no longer given dialysis and would die from kidney failure within a few days”
The case echoes that of Charlie Gard, a baby who suffered from a similar rare genetic mitochondrial disease. He died in 2017 after his parents lost a lengthy court battle to stop his life support from being withdrawn.
ST said she understands that undergoing experimental treatment in Canada may not be successful but she “wanted to die trying to live”
In a judgment released this week, Mrs Justice Roberts ruled that ST cannot have a say in decisions about her treatment and that these should be taken by the Court of Protection based on an assessment of her best interests.
“In my judgment … ST is unable to make a decision for herself about 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 said.
CLC said the “tightly knit” Christian family have spent their life savings to challenge the NHS trust’s decision to end medical treatment.
They have applied for current reporting restrictions imposed by the court to be lifted so that they can raise funds for their daughter’s continued treatment.
- The family said in a statement released through their solicitors that the last year had been “continuous torture” for them.
“We are shocked to be told by the judge that our daughter cannot make decisions for herself after all the experts have said that she does,” they said.
“We are very distressed by this injustice, and we hope that, by Jesus’s grace, this will be corrected on appeal.”
CLC chief executive Andrea Williams said the case “shows profound disrespect for the wishes and beliefs of the patients and their families”, and that the courts and NHS “have discarded sanctity of life”.
“What can be more natural or rational for a seriously ill 19-year-old than to leave no stone unturned and to take every chance of survival?
“It is indefensible that the Court of Protection, throughout these Kafkian proceedings over five months, is depriving ST of that chance by gagging her family from appealing to the charity of the public.
“The government should urgently set up a public inquiry into the secretive and oppressive practices of the Court of Protection and the Family Division in end-of-life cases.”