(LifeSiteNews) — A court order restricting reporting of the case of a United Kingdom teenager facing the removal of medical life support is also hindering her access to experimental treatments – and information from parents in the U.S. and Canada whose children have used them.
As LifeSiteNews reported on August 31, the 19-year-old, who is anonymized by court order as “ST,” suffers from a rare mitochondrial condition for which no treatment is offered in the United Kingdom. Mrs. Justice Roberts’ August 25 ruling on the case of “ST” in the U.K. Court of Protection, whose last hearing was July 26, placed a reporting restriction order on the proceedings that prevents the parents as well as “ST” from being named.
The court’s ruling explains that the parents are desperately seeking to have the order repealed so they can better source help for their daughter:
On ST’s behalf her parents have issued an application whereby they seek to have the existing reporting restrictions lifted in order that they can publicize their daughter’s situation in order to raise money for her treatment.
In addition to the current order restricting the family financially, ST’s parents have also been unable to properly source information from parents in the United States and Canada – where experimental treatment options are available – who have had children suffering from the same illness. The parents of ST are hoping that in appealing the decision they can get in contact with people in North America who may be able to provide help to their child and who have had experience with the experimental treatment options available abroad.
Interestingly, Roberts’ ruling makes clear that the matter of restricting reporting was not under discussion during the last hearing, with the judge also noting that ST’s parents were preparing to enter her in clinical trials for experimental treatments currently unavailable in the U.K.
As Roberts wrote:
[Reporting restriction] is not an issue which falls for determination today but it informs the preparations which they have been making to secure a place for ST on one of the medical trials about which there is some limited evidence in the material before the court.
According to Tom Allen of Christian Concern, whose Christian Legal Centre is providing legal advice and support to the family, the parents are hopeful that these restrictions will be lifted in a forthcoming appeal to raise funds in order to support ST’s treatment. At present, even Christian Concern can only correspond with the family by writing letters – such are the legal restrictions in place.
As the BBC reported on September 1, “ST”, who remains conscious and able to talk, wishes to seek a treatment in Canada which is not available in the U.K.
“‘ST’ believes she can stay alive for long enough to go for experimental nucleoside therapy treatment abroad, despite there being no center offering it to her yet and no guarantee it would help her,” the outlet continued.
The BBC also noted that young woman’s moving personal plea that she wants “to die trying to live.”
Doctor considers young woman’s hope a ‘delusion’
In a shocking twist of events, however, instead of agreeing with the young woman’s sentiment that she ought to remain hopeful, the doctor in charge of ST’s care, known only as “Dr A,” is characterized in the court’s ruling as believing that ST “is suffering from a delusion which derives from a false reality in that she cannot contemplate her own death.”
Responding to the claim that ST’s decision to reject despair was a form of delusion, the teenager’s legal counsel countered that his client was being reasonable because “the collective medical opinion about her prognosis had been wrong in the past and that it was very difficult to say what might happen next.”
Under continued questioning, “Dr A” admitted there was a possibility that ST would live long enough to receive a potentially life-saving treatment, while still describing the chances of success as “vanishingly small.”
“Nonetheless he maintained that her survival was likely to be measured in days, weeks or maybe a month. He agreed during the course of his oral evidence that it was not impossible that she might survive until the ‘Fall season’ which is when one of the trials is likely to start,” summarized the court.
In what appears to be a cruel paradox, it is ST’s conviction that she will survive which has undermined the assessment of her mental fitness – with the judge siding against the opinion of two psychiatrists who argued in favor of ST.
The first psychiatrist cited in the case testified that STs “higher cognitive function was not impaired” and that she was fully aware of the doctors’ prognosis, but simply disagreed that she would die.
This first psychiatrist, known only as “Dr D,” found that ST was in fact capable of making decisions such as those now being taken on her behalf by the state.
A second psychiatrist – “Dr C” – agreed that ST is indeed capable of making her own decisions about her healthcare and legal representation.
Yet, “Dr C” finally claimed that “ST” fails the four crucial tests of the 2005 mental capacity act not because she is mentally ill, or brain damaged – but because she shares the beliefs of her family.
This belief, against the dire prognosis of the doctors, is that she has a chance at life and can overcome the arduous hardships of traveling to a hoped-for treatment.
“In [Dr C’s} view, ST’s belief, shared by her family, in the possibility that nucleoside therapy may provide some benefit is not likely to result, on the balance of probabilities, from a delusion or to be a symptom of an impaired mind,” the ruling states. “Rather, it results from the close relationship which she has with her family and their shared belief that there is a prospect for recovery.”
As a result, Roberts ruled that ST was mentally incapable due to her “belief” that she can live. Roberts also cited the difficulties in transporting ST, who is on dialysis and mechanical ventilation, as well as the unlikelihood of treatment being successful if it can be obtained.
Even though the Official Solicitor supported ST’s claim to life, Roberts nonetheless concluded that ST’s unwillingness to surrender hope was a “complete inability to accept the medical reality of her position.”
In ST’s final meeting to date with “Dr D,” the court says she told him “she had lost trust in her doctors and their opinions of how she was to be treated.”
This family is seeking to overturn the reporting restrictions on ST’s case. You can support the pro-life reality they represent by signing LifeSite’s petition in support of their forthcoming legal battle in the Court of Appeal. This is a crucial step in the fight to save “ST” – and defend the reality of Christian family culture.