A sick teen who was claimed to be ‘delusional’ by hospital lawyers’ did have capacity to make decisions over her own care, judges ruled today.
Sudiksha Thirumalesh’s case had caused widespread controversy after a court ruled that she lacked the capacity to make her own medical decisions despite being conscious and able to communicate.
The 19-year-old, who had a rare mitochondrial disorder, was branded ‘delusional’ after disagreeing with doctors at the Queen Elizabeth Hospital Birmingham who wanted to place her in palliative care.
Today the Court of Appeal said the original ruling had failed to consider the evidence of two expert psychiatrists who stated that she was capable of making her decisions about her treatment.
It also criticised the University Hospitals Birmingham NHS Foundation Trust for ‘attempting to shoehorn into the term ‘delusional’ what in reality they regarded as a profoundly unwise decision on Sudiksha’s part to refuse to move to palliative care’.
Sudiksha Thirumalesh, 19, was ruled by a judge not to have capacity over her medical care, but today the Court of Appeal overturned the ‘dangerous’ decision
Despite Sudiksha’s wishes, doctors had insisted that due to her deteriorating condition, the kindest course would be to ‘de-escalate her intensive care’ and make her as comfortable as possible
Campaigning for Sudiksha: Her brother Varshan Thirumalesh, mother Revathi Thirumalesh and father Thirumalesh Hemachandran with representatives from Christian Concern and Christian Legal Centre and families with similar cases, outside the Supreme Court in London
The judgement concluded: ‘The declaration of incapacity having been set aside the presumption of capacity applied.
‘It follows that in my judgment, this remarkable young woman had capacity to make decisions in relation to her medical treatment and therefore had her wish to ‘die trying to live’.’
The case is notable when compared to other end-of-life cases because Sudiskha, who had the same mitochondrial disorder as baby Charlie Gard, was an adult and able to communicate her unwavering will to live.
Her parents Thirumalesh Hemachandran and Revathi Thirumalesh said their successful appeal was ‘bitter sweet’ but they hoped it would help secure patients’ rights in the future.
‘This case should have never been taken to the courts. Sudiksha clearly had capacity to make her own decisions, she had full capacity until her last moments.
‘It was only the toxic paternalism of the Trust which caused them to seek to overrule Sudiksha’s wishes in the Courts,’ her 55-year-old father said.
‘She had put her faith in the courts and was left devastated by the original ruling so I know she would have been so happy to win this appeal.
‘But it is bitter sweet for us as it is much too late for her.
‘The only consolation it that this ruling will go a long way to helping other people in the future.
‘It’s not for the doctor’s to decide who should live and die and that’s why we had to fight this.’
The 19-year-old, who had a rare mitochondrial disorder, was branded ‘delusional’ for disagreeing with doctors at the Queen Elizabeth Hospital Birmingham’s (QEHB) who wanted to place her in palliative care. Pictured: Sudiksha with her brother Varshan Thirumalesh (right), mother Revathi Thirumalesh and father Thirumalesh Hemachandran
Despite Sudiksha’s wishes, doctors had insisted that due to her deteriorating condition, the kindest course would be to ‘de-escalate her intensive care’ and make her as comfortable as possible.
Her parents, who had been hoping she would get well enough to join clinical trials abroad, were forced to sell their family heirlooms to cover their legal fees and were taken to court.
Despite the family’s efforts, they were left devastated after a judge found that Sudiksha lacked mental capacity and that her fate must be decided by the courts.
The ruling last August was made despite two court appointed psychiatrists stating that she did have ‘capacity’, with one noting that she was ‘comfortable, smiling, alert and in clear consciousness’.
The remarkable teenager, who was known only as ST due to draconian court order, died just days after speaking anonymously to the Mail vowing to fight her extraordinary legal battle from hospital.
Her parents Thirumalesh Hemachandran and Revathi Thirumalesh said they hoped their successful bid would mean a patient’s right to disagree with their doctors and have their wishes respected will now become a part of their daughter’s legacy
She immediately launched an appeal, but sadly died after a cardiac arrest in September before it could be heard.
The family said the drawn-out legal battle which was shrouded in secrecy cost them their life-savings and also robbed Sudiksha of the chance to fundraise to join clinical trials in Canada.
‘We did not want this legal battle, which ruined our lives and deprived Sudiksha of her chance to raise funds and see if nucleoside treatment could save her,’ they added.
The family had the backing of the Christian Legal Centre as well as the mental health charity Mind over concerns the original ruling could have ‘catastrophic’ implications for others.
Mind had warned that if it had been left to stand it could be ‘dangerous’ for anyone who disagrees with their doctors.
Experts said the appeal has overturned a long-standing legal precedent stating that if someone does not accept their medical diagnosis, they lack the ability to make decisions about their care.
Professor Wayne Martin, a University of Essex philosopher, who assisted the case with expert analysis of the legal and ethical issues, said: ‘This judgement is a huge victory, not only for the family…but for anyone facing tough decisions about their treatment.’
Andrea Williams, chief executive of the Christian Legal Centre, said: ‘Sudiksha caught the world’s attention because of her beauty and courage.
‘She told the court that if she were to die, she wanted to die trying to live. That’s exactly what she did.
‘Sudiksha saw things very clearly. To call her ‘deluded’ revealed the mindset of the NHS and Court of Protection not hers.
‘She was the one determined to fight for her life, even against the odds and against a system that continually pushed her towards death.’
University Hospitals Birmingham NHS Foundation Trust said: ‘We acknowledge the judgement today, which has clarified a difficult legal issue and will hopefully bring some closure to Sudiksha’s family.
‘This has been an extremely difficult, emotive, and complex case for all involved in Sudiksha’s life and care.
‘Sudiksha’s death was deeply upsetting for our colleagues who cared for her for such a long time, and who had always worked to provide the clearest and most compassionate care, treatment, and advice, throughout her time with us in critical care.
‘Our sincere and heartfelt condolences remain with Sudiksha’s family and loved ones.’
The family, pictured in April, said the drawn-out legal battle which was shrouded in secrecy cost them their life-savings and also robbed Sudiksha of the chance of going public to raise funds to join clinical trials in Canada.
