Woman with mitochondrial disorder lacks capacity to decide to continue life support, court rules

The Court of Protection has ruled that a young woman, known only as ST, with mitochondrial depletion syndrome lacks capacity to make end-of-life decisions.

The case was brought by the NHS Trust providing treatment to her as she disagreed with her doctors' recommendation to move her from life support treatment to palliative care. ST who is conscious and has been in intensive care for a year, opposes the initiation of palliative care as she wishes to travel to Canada to take part in a clinical trial offering experimental nucleoside treatment, despite not having been accepted onto it. A hearing was held on 7 August 2023 at which doctors argued that 19-year-old ST did not have capacity to make this decision, as she did not believe, and therefore understand, the severity of her prognosis.

In her judgment on 25 August 2023, Mrs Justice Roberts said: '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.'

Doctors argued that due to ST's rare mitochondrial disorder being progressive, and based on their understanding of its effects on the body, her chance of recovery is zero, with just a one in four chance she would survive until the autumn given in July 2023. They wish to remove haemodialysis and initiate palliative care. ST pointed to her experience of recovering from previous bouts in intensive care and stated 'I want to die trying to live', as reason for her aim to be weaned off mechanical ventilation to be able to travel to Canada. Doctors say this is not possible, though the Trust said it would not prevent transfer to Canada.

A further question for the court to consider was whether ST's beliefs stemmed from her social or cultural values, including her strong Christian faith and upbringing. In accordance with the Mental Capacity Act, making decisions in line with religious value systems (for example refusing lifesaving blood transfusions in the case of Jehovah's Witnesses) is not a sign of incapacity.

Mrs Justice Roberts concluded that this was not the case here, but rather 'ST's 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 judgment has faced criticism from some Christian organisations. Catholic organisation, The Anscombe Bioethics Centre described the judgment as 'a lethal form of paternalism.'

Decisions about the future of ST's care will be made by the Court of Protection.

Research on potential for future treatments to improve quality of life for those with mitochondrial conditions is ongoing (see BioNews 1173).