Last year, a 19-year-old girl known to the world only as “ST” was told that was delusional for wanting to fight for her life rather than have her life-sustaining treatment withdrawn. 

Only after her death was ST named as Sudiksha Thirumalesh. Only then could her face be seen, her story properly told.

She had been struggling with a degenerative mitochondrial disorder that affected her hearing, sight, muscles, and organs. She had wanted to restart experimental nucleoside treatment for her condition in Canada.

But doctors from the University Hospitals Birmingham NHS Foundation Trust had a different idea about what was best for her. They said that it was in her best interests to withdraw life sustaining treatment, applying for permission to override her wishes, withdrawing treatment.

In the process, they obtained a gagging order preventing Sudiksha from being identified. This had a colossal impact on the family and the press as they sought to tell her story. Most importantly, it made fundraising for alternative treatment practically impossible.

The Christian Legal Centre has been honoured to support several families in similar tragic situations.

But Sudiksha’s case, which this week returns to the Court of Appeal, is in a category of its own.

Why was Sudiksha different?

Sudiksha’s case was unique for several reasons.

First and foremost, she was conscious and capable. She would write letters herself or dictate them when her breathing tube did not prevent her from doing so. She grew up in a tightly knit-Christian family and was most recently taking her A Level Qualifications to continue her education. What she wanted more than anything was to live fighting her disease, or die trying.

The Court of Protection took that inalienable right away from her, using the Mental Capacity Act 2005 to override her wishes. Despite two psychiatric experts telling the court that Sudiksha was of sound mind, Mrs Justice Roberts ruled that Sudiksha was unable to comprehend the gravity of her condition as dictated by the NHS Trust, and that she did not have the mental capacity to make decisions about her own medical care.

In other words, had she accepted her fate and the court ordered end-of-life measures that came with it, then she would have been held mentally competent. In the end, whatever her wishes, or however hard she fought, it seemed the court was determined that she was never going to allow her to leave the hospital’s care alive.

While Parliament has on numerous occasions voted down bills to allow assisted suicide and euthanasia, Sudiksha was being led down a path towards court-ordered euthanasia. Had her case proceeded as nearly all such cases do, she would have had treatment withdrawn and not been allowed to receive alternative treatment — all against her clearly stated wishes.

Imbalance of power 

One of the defining features of end-of-life cases is the immense and insurmountable balance of power between the hospital and the families involved. The hospitals have taxpayer funded access to top solicitors and barristers. Litigation is, by its nature,  adversarial. Their  goal in the end is obtaining the outcome sought  by their clients. What is driving them once litigation has commenced is not doing what is in the best interests of the patient, but rather doing what they are professionally required to do, which is to act in the interests of their hospital trust clients.

Equally troubling is the pace at which these cases run. The hospitals, in anticipation of filing their case, can prepare all of their evidence and testimony in advance. The family, often with no legal knowledge and limited funds, are left scrambling to find lawyers to fight these cases on an overly aggressive timescale. 

What many members of the public are not aware of is that at this first stage of proceedings, the factual findings of the judge are essentially set in stone. Whereas families tend to be much more ready for appeals as they have had time to understand the system a little bit better and digest what was happening, by that time it can be too late. Appeals are based on challenging procedure and points of law. The threshold for challenging a factual finding by a lower court is an incredibly high bar.

End-of-life court proceedings also tend to be highly secretive. This was certainly true in Sudiksha’s case. Strict reporting restrictions are often commonplace. When these cases become the subject of national and international media scrutiny, it is only because the families are determined enough to take the cases public with the aim of gaining a public momentum to help save the life of their loved one.

Media is often vital in these cases. Public scrutiny and mass public support do affect cases. Media coverage often shines a bright light on an area of law where there is a shocking lack of transparency.

Having the appropriate legal support is also key, especially at the earliest stage possible. As these cases run at a pace not familiar to most practitioners and introduce novel areas of law and bioethics, having experienced representation who understands what is at stake and the rules of engagement, is key.

Sudiksha’s family, having run out of savings paying for a firm of solicitors, turned to  the Christian Legal Centre who then supported them and funded their case. That support not only gave them the legal assistance they needed but alleviated them of the heart-wrenching decision of allowing their child to die without a fight or bankrupting themselves.

“Best interests” standard

The Supreme Court, in the case of Aintree University Hospital NHS Trust v James held that it is “lawful to withhold or withdraw” life sustaining treatment if it was seen to be in the best interests of the patient involved. The British courts have repeatedly referred to this finding as the “gold standard” in end-of-life cases.

The issue with Aintree is that there is a world of difference between withholding or refusing treatment on the one hand and refusing families the right to seek alternative care elsewhere on the other. In recent years, Britain has been rocked by several high-profile cases where the parents have been offered alternative care by different hospitals in different jurisdictions, but the British courts have ruled that the child must have their life ended by the hospital seeking the court order to do so. Indi Gregrory, Alfie Evans, and Charlie Gard were cases where Bambino Gesu hospital in Rome offered alternative care for the children involved, but the UK courts ordered that the children nonetheless be removed from life sustaining treatment and that they be forbidden from travelling abroad even though that would allow them to keep living. For Sudiksha, the option was treatment in Canada.

Conclusion

Sudiksha Thirumalesh died in the shadows of an anonymity order, fighting for her life and for her right to continue receiving treatment.

The courts were particularly cruel to Sudiksha. Because she wanted to fight, she was labelled delusional. Because she wanted to keep living, she was gagged, stopping her from properly fundraising and telling her story.

This serves as a warning to all those considering supporting assisted suicide and euthanasia. If the courts can do this to a vulnerable 19-year-old now, what will they do if killing becomes seen as just another treatment option?