A judge has ruled that an “alert and conscious” adult woman does not have mental capacity because she disagrees with doctors who want to put her on a death pathway.
The Court of Protection concluded that the 19-year-old student, named only as ST for legal reasons, could not be trusted to make decisions for herself because she distrusted the medical advice of doctors who wish to move her from intensive care to palliative care.
Catholic bioethicists have denounced the court’s decision, however, as a “lethal form of paternalism”.
ST’s preparations for her A-Levels were interrupted last year when she was admitted to hospital due to a respiratory arrest, while also testing positive for COVID-19.
Since then she has been unable to leave the intensive care unit, being completely reliant on a ventilator to breathe, a tube to receive nutrition, and a haemodialysis machine.
The NHS hospital trust caring for ST has argued that her progressive mitochondrial illness has damaged her organs to such an extent that she does not have long left to live and has proposed moving her to “a treatment plan of palliative care”, which would involve giving ventilation but withdrawing haemodialysis.
The treatment plan will inevitably accelerate her death from kidney failure within days, and ST has rejected it, arguing that she believes she should be given a chance to recover.
She has instructed her lawyers to fight to keep her alive and to obtain permission for her to travel to Canada or North America in the hope of taking part in clinical trials for experimental nucleoside treatment which might give her an improved chance of survival.
She told a psychiatrist who examined her: “This is my wish. I want to die trying to live. We have to try everything.”
Mrs Justice Roberts ruled however that ST is “unable to make a decision for herself in relation to her future medical treatment … because she does not believe the information she has been given by her doctors”.
She concluded: “In my judgment, and based upon the evidence which is now before the court, I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.”
A decision will soon be taken by the court whether to place ST on the death pathway sought by the NHS trust.
According to the Anscombe Bioethics Centre, the Oxford-based institute serving the Catholic Church in the UK and Ireland, the decision of the court not only silenced ST but also denies her “the right to litigate against the decision to take away her voice”.
A spokesman said the just “has taken ST’s belief in the possibility of her surviving her illness and in receiving experimental treatment to be signs that ST refuses to believe the information given to her by her doctors”.
“As she does not accept their prognosis, her ability to make decisions is taken to be impaired,” the spokesman said.
“The fact that people believe different things is not enough to show that they do not have capacity to decide things for themselves.
“Someone can make a mistaken decision, or one that is objectively unreasonable, or unwise, or even perverse or a decision that is harmful to themselves or unfair to others, and yet have capacity to make that decision. This is why we can hold people responsible for the decisions they make.
“To make decisions for people when they could make decisions for themselves is paternalism. It is treating adults as if they were children.
“This ethical truth is also reflected in the Mental Capacity Act which emphasises that someone must not ‘be treated as unable to make a decision merely because he makes an unwise decision’.”
The spokesman continued: “The judge has taken a perilous step in interpreting ST’s disagreement with her doctors as tantamount to an inability to use the information she has been given about her condition.
“She can use it. She just disagrees with it. We may well consider her decision unwise and doctors are not required, given limited resources, to provide any and all treatments that patients may request.”
He added: “In this case, a vulnerable patient’s disagreement with her doctors is being used against her as a means not only to take away her voice but further to deny her the right to litigate against the decision to take away her voice.
“Most disturbingly of all, her wish to continue to receive life-sustaining treatment, such as dialysis, is not only being ignored, but that very wish is being seen as a reason to deny her dignity as a mentally capable adult. This is a lethal form of paternalism.”
ST’s case has similarities to the cases of Charlie Gard, Alfie Evans, Pippa Knight, and Alta Fixsler, in which judges ruled against the parents’ wishes and permitted doctors to withdraw life-sustaining treatment.
ST is unique because she is an adult able to communicate her wish to continue receiving dialysis and other forms of intensive care.
None of the doctors who interacted with or treated her claimed that her condition had affected her brain, and the judge “accepted that ST does not suffer from any recognised psychiatric or psychological illness.”
According to advice put before the Court, there is no cure to enable the teenager to resume her life outside of her clinical setting.
The Christian Legal Centre has criticised the judge’s decision as “effectively condemning her to death” while her family issued a statement saying that they are “very distressed by this injustice” and will be issuing an appeal.
In a statement, ST’s family said they have endured a year of torture
“Not only are we anxious about our beloved daughter’s fight for survival, but we have also been cruelly gagged from being able to speak about her situation.
“We are not allowed to ask people for prayers or for help which she desperately needs. It is a matter of life and death for our daughter to raise money for treatment in Canada, so these arbitrary reporting restrictions are literally killing her.
“We are shocked to be told by the judge that our daughter does not have capacity to make decisions for herself after all the experts have said that she does. We are very distressed by this injustice, and we hope that, by Jesus’s grace, this will be corrected on appeal.”
When the court reviews the application for palliative care, ST’s interests will now be represented by the Official Solicitor, the official responsible for representing patients who lack mental capacity.
This page is available to subscribers. Click here to sign in or get access.
Areas of Catholic Herald business are still recovering post-pandemic.
However, we are reaching out to the Catholic community and readership, that has been so loyal to the Catholic Herald. Please join us on our 135 year mission by supporting us.
We are raising £250,000 to safeguard the Herald as a world-leading voice in Catholic journalism and teaching.
We have been a bold and influential voice in the church since 1888, standing up for traditional Catholic culture and values. Please consider donating.