(LifeSiteNews) — A National Health Service (NHS) hospital was granted its request to have a conscious 19-year-old’s medical decisions made by the U.K. courts, arguing that the young woman’s desire to continue fighting to live is a “delusion” that leaves her unfit to make choices about end-of-life medical care.
The patient, a 19-year-old anonymously referred to as ST in the legal proceedings, suffers from mitochondrial depletion syndrome, a rare genetic condition in which the energy-producing mitochondria are severely deficient in the body’s cells. Though the disease has left her reliant upon dialysis, a feeding tube and a ventilator due to kidney damage, hearing loss and muscle weakness, the condition has not affected ST’s brain function, as first reported by the Daily Mail.
Despite the nature of her terminal illness, which doctors have recently described as “actively dying,” ST remains determined to do all she can to live as long as possible, including participating in experimental treatments in Canada. Knowing the reality of her prognosis, the young woman still told a doctor, “This is my wish. I want to die trying to live. We have to try everything.”
Last week, however, a judge sided with the NHS hospital and agreed that ST’s end-of-life care could be determined by the courts.
A desire to live viewed as a ‘delusion’
An August 25 judgment was released on Wednesday after a hearing that took place on August 7. The case was filed by the University Hospital Birmingham NHS Foundation Trust, seeking authorization from the Court of Protection to stop life-saving treatment and shift to palliative care. Doctors against the path of continued treatment have described the girl’s determination to live as a “delusion.”
Mrs. Justice Roberts wrote 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, I likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.”
“Whilst she has been sustained by the near continuous presence of her mother and, to a lesser extent, the other members of her close family, she has endured almost a year of intensive medical and surgical intervention which has been both painful and distressing for her,” the judge argued. “She is frightened by the prospect of dying and clings to her desire to survive what her doctors have repeatedly told her is an unsurvivable condition.”
Roberts added that “her profound inability to contemplate the reality of her prognosis, and a fundamentally illogical or irrational refusal to contemplate an alternative are all likely to have contributed to impaired functioning… render[ing] her unable to make a decision for herself in relation to her future medical treatment.”
The decision means dialysis will no longer be provided or any attempts to resuscitate her, which was required in both May and July.
ST’s condition significantly worsened in August 2022 after she developed serious respiratory issues following a COVID-19 infection. Both of her parents and her brother – who spoke on behalf of the family at the hearing – also desire to take any feasible steps to prolong her life.
The court heard from several experts who concurred that the young woman’s condition was not only terminal but unlikely to improve with any additional treatments and that she would not be able to wean off any of the current intensive treatment she had been receiving. However, as noted by the judge, “ST is well aware that she has been offered a very poor prognosis by her doctors.”
The reality that “her death is necessarily imminent,” giving her “weeks or even months to live,” was a consensus made by the medical professionals who testified, although “the exact prognosis is uncertain.”
While the NHS hospital used these testimonies to argue that the young woman should go into palliative care – which would remove dialysis but maintain ventilation – her family is clinging to every moment they have with her, including the possibility of a miracle if she is able to access experimental treatment in Canada.
In her decision, Roberts also noted that “ST is able to communicate reasonably well with her doctors with assistance from her mother and, on occasion, speech therapists.” During the week leading up to the August 7 hearing, two different psychiatrists who conducted the most recent assessments of ST’s mental capabilities “suggested that she had capacity to make these choices for herself.”
Even the Official Solicitor agreed that “ST has capacity to conduct these proceedings through her own legal representatives and to make decisions in relation to her future medical treatment.” The young woman affirmed to her attorney in July her understanding of her progressive, terminal disease and “confirmed that she wished to continue treatment to give her ‘the best opportunity of life.’” She also reportedly gave him a “thumbs up” when asked if she wanted to pursue experimental intervention in Canada.
Roberts also cited the 2005 Mental Capacity Act for definitions and legal context that guided her decision. The law defines inability to make one’s own decisions as “a person [who] lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.” Additional stipulations require that “a person is not to be treated as unable to make a decision merely because he makes an unwise decision” or because of “a condition of his, or an aspect of his behavior, which might lead others to make unjustified assumptions about his capacity.”
Christian family relies on ‘Jesus’ grace’ to reverse ruling
“This has been a year of continuous torture for the family,” ST’s family said in a statement shared by their legal team. “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.”
Nobody involved in the case is named, and the girl’s family expressed frustration that they are being “cruelly gagged from being able to speak about her situation.” They added that “these arbitrary reporting restrictions are literally killing her” because they are unable to raise money for the experimental Canadian treatment.
U.K. courts have the authority to require all information in legal cases pertaining to the Mental Capacity Act to remain private unless specifically authorized by the court for public release.
“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,” they continued. “We are very distressed by this injustice, and we hope that, by Jesus’ grace, this will be corrected on appeal.”
Christian Legal Centre chief executive Andrea Williams said the “profoundly disturbing case demonstrates the urgent need for an overhaul into how end-of-life decisions are made in the NHS and the Courts.”
“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.”