The parents of a young woman branded "delusional" for wanting continued hospital treatment instead of palliative care have won a court battle over the legality of the ruling that led to their daughter's death.
Sudiksha Thirumalesh, who was 19 at the time, died Sept. 12, 2023, shortly after she was put on an end-of-life care pathway against her will and stating clearly to an examining psychiatrist, "I want to die trying to live … we have to try everything."
Three judges at the Court of Appeal in London overturned the September 2023 ruling by the Court of Protection that Thirumalesh lacked mental capacity to make decisions about her medical treatment simply because she disagreed with doctors who maintained that it was in her "best interests" to die.
The lower court had sided with doctors of the University Hospitals Birmingham NHS Foundation Trust who said that Thirumalesh was "delusional."
On July 31, however, the three appeal court judges accused doctors of trying "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."
The three judges said the patient was entitled in law to the assumption she had the capacity to make her own decisions "and this remarkable young woman therefore had her wish to 'die trying to live.'"
She was entirely dependent on a ventilator to breathe, a tube to receive nutrition and a hemodialysis machine since suffering a respiratory attack in 2022 after she contracted COVID-19.
Because she had encephalomyopathic mitochondrial DNA depletion syndrome, a progressive mitochondrial illness, doctors said she could not improve and opposed her plan to seek permission to go to the United States or Canada to take part in clinical trials for experimental nucleoside treatment which might have given her a chance of survival.
The Court of Protection supported the doctors, ruling that Thirumalesh'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, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain."
Thirumalesh died soon after she was placed on palliative "end of life" care, a pathway which characteristically involves the removal of life-saving treatment combined with heavy sedation and the removal of food and fluids.
Her parents, Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh, said in a July 31 statement that they were grateful to the appeal court judges for the chance to "challenge the frightening and unfair judgment made against Sudiksha even after her death, and for setting the law straight.
"A patient's right to disagree with her doctors, not to relinquish hope, and still to have her decisions respected, will now be part of Sudiksha's legacy," they said in the statement posted on the website of Christian Concern.
"This case should have never been taken to the courts," they continued. "Sudiksha clearly had capacity to make her own decisions, and it was only the toxic paternalism of the Trust which caused them to seek to overrule Sudiksha's wishes in the Courts.
"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. Alas, the belated recognition of some of the errors made in her case cannot bring her back."
Andrea Williams, chief executive of the Christian Legal Center, which supported the family in their case, 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.
"Good law and good healthcare promotes and protects life and does not create loopholes to 'choose' or impose death."
The original ruling was severely criticized at the time by David Jones, professor of the Oxford-based Anscombe Center of Bioethics, a bioethics institute serving the Catholic Church in Great Britain and Ireland, as a "perilous step" toward a "lethal form of paternalism."
"Most disturbingly of all, her wish to continue to receive life-sustaining treatment, such as dialysis, is not only being ignored, but that very wish is being seen as a reason to deny her dignity as a mentally capable adult," he said.
