A bishop has expressed alarm at a Court of Protection decision that a woman with mitochondrial disease is “unable to make a decision for herself in relation to her future medical treatment”.
In a judgement published on 25 August, Mrs Justice Roberts accepted the argument of an unnamed NHS trust that the 19-year-old woman – known as “ST” in court documents – does not have the capacity to decide on her future treatment.
Although ST is conscious and does not suffer from any diagnosed psychiatric disorder or brain damage, the judge said that ST did not trust the information given to her by her doctors and so did not understand the nature of her condition.
Her “complete inability to accept the medical reality of her position…is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain,” the judge said, making her incapable under the 2005 Mental Capacity Act.
It will now be for a court to decide whether ST should have her care withdrawn or continue to receive treatment.
Bishop John Sherrington, the Westminster auxiliary who speaks on life issues for the bishops of England and Wales, said he was “alarmed that a conclusion was reached where ST was deemed not capable of making decisions about her ongoing care and her ardent desire to continue receiving life-sustaining treatment”.
Her family expressed shock at the decision: “We are very distressed by this injustice, and we hope that, by Jesus’s grace, this will be corrected on appeal.”
ST suffers from an exceptionally rare form of mitochondrial disease which has “led to the dysfunction and death of cells in a variety of her organs, resulting in generalised muscle weakness, respiratory muscle insufficiency and swallowing difficulties and aspiration pneumonia”, the court documents said.
She was admitted to hospital with Covid in August last year and has been in intensive care since December, sustained on a ventilator and undergoing dialysis. She and her family want her to receive experimental therapy in trials in the US or Canada.
Clinicians have said that she has a vanishingly small chance of recovery even if accepted for a trial, and do not anticipate her ever living outside of an intensive care setting. She has “entered a terminal stage of her illness”, according to expert evidence.
One of the doctors most involved in her care over the past year told the judge that he “had been unable to discern any acceptance on her part that she may die in the near future” and considered her position “as an illegitimate disregard of the facts”.
ST has told doctors that her belief in her ability to survive is “unshakeable”. She told one of the psychiatrists who assessed her mental state: “I want to die trying to live. We have to try everything.”
She indicated to a solicitor that she wished to pursue experimental treatment in Canada. However, the circumstances of the solicitor’s instruction are unclear and he represented ST at the litigation alongside the Official Solicitor who acts in cases of mental incapacity.
The court documents said: “Because she cannot contemplate an outcome that is inconsistent with her conviction that she can, and will, recover, she cannot address her mind to weighing up alternative options, including palliative care and what that might involve.”
The hospital trust has proposed moving ST onto a palliative care plan which would continue ventilation but withdraw dialysis, hastening her death.
Two psychiatrists instructed by the hospital trust to assess her capacity did not find any evidence of impairment, although one said she did not meet the functional test of capacity under the Mental Health Act.
She told one that “she had lost trust in her doctors and their opinion of how she was to be treated”. The psychiatrist said she was “in denial about the imminence of her death”, a view “informed to an extent by both her religious faith and the love and support of her family” (although he did not consider her family an undue influence).
The second psychiatrist said that she did not meet the functional test because “her inability to contemplate a ‘zero per cent chance of recovery’ impacts her ability to weigh any decisions she makes about active treatment versus palliative care”.
This inability “is not because of an impairment of mind but rather the result of shared beliefs that she holds with her family”. It was therefore “a capacitous decision” even if mistaken.
The Official Solicitor also said that the case concerned “where the boundary should be drawn between an unwise and an incapacitous decision”, arguing that “the court must take into account the understandable human emotion of hope even if that hope if forlorn”.
However, Mrs Justice Roberts concluded that, under the terms of the Mental Health Act, “a person’s ability to understand, use and weigh information as part of the process of making a decision depends on him or her believing the information”.
She continued: “ST is unable to make a decision for herself in relation to her future medical treatment…because she does not believe the information given by doctors.”
This was, she said, distinct from an “unwise decision” because “an essential element of the process of decision-making is missing”.
“In my judgement, she refuses to contemplate when her death may occur because she has invested all her remaining physical, emotional and spiritual energy in staying alive and pursuing the option of alternative treatment.”
The judge said that the trauma of ST’s admission to hospital and her protracted period in intensive care were contributory circumstances “likely to have contributed to impaired functioning”.
Responding to the judgement, ST’s family said they were “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”.
They said they were “cruelly gagged” by ongoing reporting restrictions which mean they “are not allowed to ask people for prayers or for help which she desperately needs”, including fundraising for any experimental treatment.
The Anscombe Bioethics Centre said that the judgement was “a lethal form of paternalism”.
“The disturbing nature of this case is that ST’s disagreement with her doctors about the future of her treatment is itself being treated as a sign that her mental capacity to weigh up her options is impaired,” said the centre’s director, Prof David Albert Jones, in a statement on 4 September.
He continued: “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 and unfair to others, and yet still have capacity to make that decision. This is why we can hold people responsible for the decisions they make.”
He said it was “perilous” to treat ST’s disagreement with clinicians as tantamount to incapacity, remarks echoed by Bishop Sherrington in his comment on 6 September.
“I am deeply concerned that a difference in opinion or a patient’s disagreement with her doctors can form the foundation on which a young, conscious woman is deemed incapable of making decisions with regards to her life and care,” said the bishop.
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