In a landmark ruling handed down today, Lady Justice King, Lord Justice Singh and Lord Justice Baker overturned the decision of the Court of Protection which declared that 19-year-old Sudiksha Thirumalesh lacked mental capacity to make decisions about her medical treatment.
Sudiksha, an A-level student who remained fully conscious, disagreed with her doctors’ opinion that her condition was incurable and that she should therefore have all life-sustaining treatment ended and move to a palliative care pathway. In August 2023, the Court of Protection declared that this showed Sudiksha lacked mental capacity, and decisions about her treatment could be made without her consent based on an assessment of her best interests. Tragically, Sudiksha died in September 2023.
In a rare move, because of the importance of the legal principles involved in the case, the Court of Appeal granted Sudiksha’s parents’ permission to pursue a posthumous appeal against the ruling.
The Court of Appeal’s important judgment now reaffirms the right of patients to disagree with their doctors without risking being declared mentally incompetent and having their best interests assessed and enforced by the courts. This ruling potentially affects thousands of patients.
Giving the judgment of the Court, Lady Justice King said that “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 has also ruled that Mrs Justice Roberts had made a further error in overruling the unanimous view of two psychiatrists who independently examined Sudiksha and concluded that she had full mental capacity.
Sudiksha suffered from a rare genetic mitochondrial disease which caused chronic muscle weakness, loss of hearing, and damage to her kidneys, making her dependent on regular dialysis and other medical treatment to continue living. Her condition did not, however, affect the functioning of her brain, which her heart-breaking written notes reveal.
Sudiksha’s wish was to be allowed to go to Canada for experimental treatment which could have given her a chance of survival. But doctors at the Queen Elizabeth Hospital Birmingham – a hospital described as ‘toxic’ and ‘mafia-like’ in a recent BBC investigation – concluded that it was in Sudiksha’s best interests for her life-sustaining treatment to be withdrawn so that she would die rather than to have her sufferings prolonged.
Sudiksha disagreed with her doctor’s outlook and declared she wanted to “die trying to live”; the University Hospitals Birmingham NHS Foundation Trust therefore made an application to the Court of Protection arguing that her resistance was a “delusion” and asking the Court to declare that she lacked mental capacity to make decisions about her healthcare since she disagreed with her doctors’ diagnosis and prognosis.
Unable to fundraise
While the case was before the Court, Sudiksha’s family was unable to fundraise for a potential transfer to Canada because of severe reporting restrictions imposed by the secretive Court of Protection. The battle to have these reporting restrictions lifted made repeated front-page new and the injunctions were only finally lifted after Sudiksha’s passing in September 2023.
Supported by the Christian Legal Centre, Sudiksha instructed her own lawyers to argue that she had mental capacity and should be independently represented in Court proceedings.
Despite two psychiatric experts appointed to examine Sudiksha informing the Court that she was of sound mind, Mrs Justice Roberts disagreed and concluded that Sudiksha’s failure to believe her doctors meant she lacked the ability to understand information and make decisions about her medical treatment.
Sudiksha died shortly after the Court’s decision on 12 September 2023.
Lawyers argued that it was legally impermissible for the Court 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, was granted permission to intervene in the case. MIND argued that Mrs Justice Roberts’ 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.
The Hospital’s lawyers argued that Sudiksha’s refusal to accept advice of her doctors and her insistence on seeking life-preserving treatment in Canada was “delusional”.
However, in today’s judgment Lady Justice King said the Trust was 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”.
Having formally revoked the declarations made by the Court of Protection, Lady Justice King concluded by saying that Sudiksha was entitled in law to be assumed to have capacity, “and this remarkable young woman therefore had her wish to ‘die trying to live.’”
Sudiksha’s legacy
Sudiksha’s parents said: “We are grateful to the Court of Appeal for an opportunity 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.
“This case should have never been taken to the courts. 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.
“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.”
Andrea Williams, chief executive of the Christian Legal Centre which has supported the family, 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.
“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.
“We pray Sudiksha’s legacy will mean a more transparent, life-promoting attitude in our hospitals, courts and parliament. The decision of the Court of Appeal acknowledges one of the terrible errors that were made in the way Sudiksha was treated by the NHS and courts.
“Rather than renewing, year after year, attempts to legalise assisted suicide, Parliament should urgently review the Mental Capacity Act 2005 to ensure that cases such as Sudiksha’s never happen again.”
Find out more about Sudiksha Thirumalesh (ST)
