British appeals court overturns lower court that forbade lifesaving care to teen

Sudiksha Thirumalesh died in September 2023 after a legal fight to circumvent a ruling in the U.K. that she was not competent to make decisions about her care. / Credit: Christian Concern

Ann Arbor, Michigan, Aug 2, 2024 / 17:21 pm (CNA).

Britain’s Court of Appeal has overturned an earlier court ruling that had declared that 19-year-old Sudiksha Thirumalesh lacked the mental capacity to make decisions about her medical treatment.

Sudiksha, who had resided in England throughout her life, was the daughter of Indian immigrants. She suffered from a rare degenerative mitochondrial disease that caused muscle weakness, loss of hearing, and damage to her kidney. While dependent on kidney dialysis, a gastric feeding tube, a respirator, and other medical procedures, British government physicians claimed she was not mentally competent to decide on her health care.

Sudiksha and her family had requested to be allowed to go overseas for breakthrough treatment that could have given her a shot at survival. But National Health Service (NHS) doctors refused, having concluded that she was “actively dying” and that it was supposedly in her best interest to be denied the treatment. 

When Sudiksha disagreed with the doctors’ conclusion, she said she wanted to “die trying to live.” But the University Hospitals Birmingham NHS Foundation Trust applied to the Court of Protection arguing that this was a “delusion” on her part and asked the court to declare her mentally incompetent to make decisions about her care because she disagreed with the medical diagnosis and prognosis.

Doctors engaged by Sudiksha’s family disagreed with medical staff of Britain’s National Health Service, which was providing treatment, and called for life-sustaining and experimental treatment for her condition in Canada and the United States. However, the Court of Protection declared in August 2023 that this showed Sudiksha lacked mental capacity, and decisions about her treatment could be made without her consent.

Sudiksha’s condition did not affect her brain function despite impaired vision, chronic muscle weakness, kidney damage, and other issues. She was conscious and able to speak until her death in September 2023, which was attributed to heart failure. The NHS asked the Court of Protection to approve palliative care to cut off her kidney dialysis, thus resulting in death in a matter of days.

Her brother was quoted as saying that doctors refused to provide antibiotics for a hospital-acquired infection and then stopped giving blood pressure meds that in turn caused her fatal cardiac arrest.

Sudiksha’s parents are Catholics from northern India who emigrated to the United Kingdom. Her brother, Varshan Thirumalesh, told New Daily Compass: “From the beginning, it was clear as Christians we give a different value to life compared to the hospital doctors. We believe life always has value and dignity even if the person is very ill. The system instead gives up on life very easily in the name of the patient’s best interests. Staff made fun of our beliefs and mocked Sudiksha. They tried to break her psychologically and to destroy her will to live by telling her repeatedly she was going to die.” 

In its finding, the Court of Appeal granted permission to Sudiksha’s parents to pursue a posthumous appeal against the ruling by the Court of Protection. The new ruling reaffirms the right of patients to disagree with their doctors without the risk of being declared mentally incompetent and having their best interests assessed and enforced by the courts. According to a release by Christian Concern, a British charity, this will potentially affect thousands of patients facing difficult diseases and medical conditions.

For the appeal court, Justice Eleanor King wrote: “It is essential always for any person conducting a capacity assessment” to remember that, under the Mental Capacity Act, a “person is not to be treated as unable to make a decision merely because he makes an unwise decision.”   

The Court of Appeals also ruled that the Court of Protection erred when it overruled the unanimous view of two psychiatrists who independently examined Sudiksha, who concluded that she had full mental capacity.

Supported by lawyers of the U.K. Christian Legal Centre, Sudiksha instructed them to argue that she was of sound mind. According to the nonprofit law firm, it was legally impermissible for the Court of Protection to dismiss the unanimous view of psychiatric experts and to rely instead on the opinions of intensive care doctors with no expertise in mental health. A major mental health charity, MIND, argued that the court’s judgment “set a dangerous precedent by ruling that a patient who disagreed with their doctors had to be deemed on account of that disagreement to have a mental illness.”

In the July 31 ruling in the appeals court, King said that British health authorities were 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.” In revoking the lower court ruling, the judge said Sudiksha was entitled in law to be assumed to be mentally competent, “and this remarkable young woman therefore had her wish to ‘die trying to live.’”

In a statement, Sudiksha’s parents said: “The irrational and cruel judgment of the Court of Protection had a devastating impact on how Sudiksha and her family were treated by Queen Elizabeth Hospital on a daily basis. From the moment the judgment was made, it gave the clinicians the power to do whatever they liked, with no respect for Sudiksha’s own wishes and treating her family with hostility and contempt. No real effort was made to secure a clinical trial of nucleoside therapy, which might yet have saved Sudiksha’s life. May God forgive all those who have done this to her.”

In an interview with CNA, the executive director of the Euthanasia Prevention Coalition, Alex Schadenberg, said that while this may not have been a case of euthanasia because Sudiksha died a natural death, it raises concerns because she was denied the chance of obtaining potentially lifesaving care. 

“They took away her right to what she wanted to do in her health care decisions,” Schadenberg said. “My position is, even if we disagree, if a treatment is available and they want it, why should we stand in the way? It was very wrong, and I am of the position that the family should sue for compensation for the costs and aggravation.”