19-year-old British woman with rare medical condition denied dialysis against her consent.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

A 19-year-old British woman with a rare genetic condition is being withdrawn from dialysis treatment against her will and the option to travel to Canada for experimental treatment.

The young woman, known as ST, has a rare genetic mitochondrial depletion syndrome requiring constant hospital attention – but she is conscious and able to communicate. The National Health Service (NHS) in the UK wants to withdraw her dialysis treatment and place her into palliative care.

This is not an issue of euthanasia but this is an issue of the right of a competent person to consent to treatment.

An article by Inderdeep Bains that was published in the Daily Mail on August 30, 2023 reported:

The teen, described as a 'fighter' by those who know her, had been studying for A-levels when her condition deteriorated after contracting Covid last August.

She has spent the past year in intensive care where she has regular dialysis treatment, is fed through a gastrostomy tube and is using a ventilator to breathe.

The trust wants to move her to palliative treatment – in which dialysis would be withdrawn and there would be no attempt to resuscitate her if she needed to be.

But the teen and her family are desperate to do everything they can to extend her life, including joining clinical trials for nucleoside therapy. They say her condition causes muscle weakness, loss of hearing and kidney damage –making her dependant on the dialysis and intensive care – but it does not affect her brain.

Hospital doctors argue that her refusal to accept imminent death is a sign of 'delusion'.

Mrs Justice Roberts acknowledged that ST, who watched proceedings from hospital, communicates reasonably well and displays an 'overwhelming desire to live'.

But she has now ruled that the decision over her treatment should be made by a court.

She 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.

In other words, ST will lose her right to consent to treatment because she wants  everything possible done to restore her health. It is true that clinical trials are often a long-shot, but Justice Roberts has decided that she does not have the right to try.

Bains reported that family as stating:

'This has been a year of continuous torture for the family...

'We are shocked to be told by the judge that our daughter does not have the capacity to make decisions for herself after all the experts have said that she does.'

I am concerned with the lack of respect shown for the right to consent to treatment and for denying the wishes of this young adult woman. It may be that ST will not survive, however denying her dialysis and the right to have hope is wrong.