UPDATE: ‘ST’ has tragically died.
An NHS hospital is asking the Court of Protection to authorise removal of life-saving medical treatment from a 19-year-old girl, effectively condemning her to death.
Unlike in similar cases such as Charlie Gard, Alfie Evans and Archie Battersbee, the girl – anonymised by the court as ‘ST’ – is conscious, able to speak, and has instructed her own lawyers to argue that she should be kept alive and allowed to go to Canada for experimental treatment which would give her a chance of survival.
ST is suffering from a rare genetic mitochondrial disease similar to that of Charlie Gard, the baby whose life support was withdrawn as a result of a bitterly fought high-profile legal case in 2017. ST’s condition causes chronic muscle weakness, loss of hearing and damage to her kidneys. She is dependent on regular dialysis and other intensive care, but the condition does not affect the functioning of her brain.
The hospital argues that while ST’s prognosis is uncertain and she may survive for some months, her condition is deteriorating and she is therefore “actively dying”. The NHS trust has asked the court to approve a “palliative care plan” for ST which would mean she is no longer given dialysis and would die from kidney failure within a few days.
Two psychiatric experts instructed by the hospital have examined ST and have told the court that she is not suffering from any mental health illness and has the mental capacity to make decisions about her own medical treatment.
ST has told the psychiatrists she disagrees with the doctors and wants them to continue to sustain her life. She wants to be given a chance to participate in clinical trials of nucleoside therapy, which are due to resume in Canada later this year and would give her a chance of survival. She said she realised that the experimental treatment might still fail to save her, but in that case, she said that she “wanted to die trying to live”.
However, the hospital doctors have argued that ST’s refusal to trust the judgment of her doctors and to accept her immanent death is inevitable amounts to a “delusion”.
In a judgment released yesterday, Mrs Justice Roberts ruled that the decisions about ST’s life and death should be taken by the Court of Protection based on an assessment of her best interests, and that ST lacks capacity to have a say in the matter via her own lawyers. Rejecting the opinion of both psychiatric experts, the judge concluded that ST is mentally uncapable of making decisions for herself because she does not believe what hospital doctors say about her condition. She concluded: “In my judgment… 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.” [para 93]
A tightly knit Christian family
ST has grown up in a tightly knit Christian family who have spent months resisting the legal proceedings brought by the NHS to end her life. Despite her illness, she attended a regular school, achieved good GCSE results and was studying for her A-levels when her health deteriorated after catching Covid in August 2022. She has been in an intensive care unit ever since.
In November 2022, ST issued lasting powers of attorney to authorise her parents to make decisions on her behalf in the future if she was to lose mental capacity to do so in the future. In February 2023, the hospital asked the Court of Protection to set aside the document on the grounds that she did not have mental capacity to sign it. The hospital then made a further application to approve a palliative care plan, said to be in ST’s best interests but which would lead to her death within a few days.
Like the family of Charlie Gard, ST’s only hope of cure is the experimental treatment known as nucleotide therapy, which is only available abroad. Her family wants to appeal to the public to raise funds to enable her to participate in a clinical trial which is expected to start in Canada later this year.
However in March 2023, the court made a “Transparency Order” which imposes draconian restrictions on reporting any information which might lead to identification of ST, members of her family, or the hospital. This prevents ST and her parents from giving any media interviews or making any appeal for funds. The transparency order was made at the request of the NHS trust without any reasons.
ST’s parents made an urgent application to reconsider the transparency order to enable them to raise funds for ST’s treatment in Canada. The court has held three hearings since that time, but has not found the time to consider that application to date.
‘A year of torture for us’ say parents
In a statement communicated via their solicitors, the family (whose identity cannot be revealed) has said: “This has been a year of continuous torture for the family. 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.”
Andrea Williams, the Chief Executive of Christian Legal Centre which has been involved in a series of earlier end-of-life cases, said in response to the judgment of Mrs Justice Roberts:
“This profoundly disturbing case demonstrates the urgent need for an overhaul into how end-of-life decisions are made in the NHS and the Courts.
“This demonstrates the need for a more open and transparent system. Justice is done in the light and not behind closed doors.
“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?
“ST has wanted to tell her story to the world in order to try and access further treatment but has been prevented from doing so by the ironically named Court of Protection.
“We have been calling upon the government for some time now to urgently set up a public inquiry into the practices of the Court of Protection and the Family Division surrounding end-of-life cases after a series of disturbing and upsetting cases.”
Find out more about Sudiksha Thirumalesh (ST)