Labelled ‘deluded’ because she wanted to ‘die trying to live’

30 April 2024

Over a 2-day hearing on 1 and 2 May 2024, the second highest Court in England, the Court of Appeal, will scrutinise the ruling of Mrs Justice Roberts who declared that 19-year-old Sudiksha Thirumalesh lacked mental capacity to make decisions about her healthcare.

Doctors from University Hospitals Birmingham NHS Foundation Trust concluded that it was in severely ill Sudiksha’s ‘best interests’ to withdraw life-sustaining treatment to let her die rather than prolong her sufferings.

As Sudiksha disagreed and declared she wanted to “die trying to live”, the Trust made an application to the Court arguing that her disagreement with doctors was a “delusion” and asked the Court to declare that she lacked mental capacity to make decisions about her healthcare.

Sudiksha’s wish was to be allowed to go to Canada for experimental treatment which would give her a chance of survival. However, her family was unable to fundraise for that because of severe reporting restrictions imposed by the Court.

Supported by Christian Legal Centre, Sudiksha instructed her own lawyers to argue that she had mental capacity and should be represented in the Court proceedings.

Despite both psychiatric experts appointed to examine Sudiksha telling 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.

In a rare move, however, the Court of Appeal granted Sudiksha’s parents permission to pursue a posthumous appeal against the ruling that she lacked mental capacity.

Their lawyers will say 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, has been granted permission to intervene. MIND will argue that in making a disagreement with doctors tantamount to mental illness, the ruling of Mrs Justice Roberts sets a dangerous precedent.

Andrea Williams, chief executive of the Christian Legal Centre, said:

“The High Court ruling in this case was one of the most disturbing rulings we ever seen in regard to end-of-life care in the NHS.

“If this is not overturned it will have far reaching consequences for any NHS patient who wants to fight to live and does not agree or want to go along with a doctor’s plan to end their life against their wishes.

“If Mrs Justice Roberts’ ruling is not overturned it risks creating a path for the Court of Protection to venture into dangerous territory, with widespread implications for patients accessing NHS services.

“Telling someone fully conscious that they are deluded and do not have capacity for wanting to live and therefore must agree to die, is a terrifying scenario for all of us. This is what Sudiksha and her family faced for weeks and months in secret. What does it say about our society and health service?

“Gagged, intimidated and fearing criminalisation for speaking to anyone about what was happening to them, what Sudiksha and her family faced for over a year was deeply troubling and must never happen again.

“Despite their loss, the family’s courage is now enabling them to expose and shine light on what has happened and to seek full justice for their daughter. We are standing with them at every step.”

Further background

Sudiksha was suffering 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 intensive care. It did not, however, affect the functioning of her brain, which her heart-breaking written notes reveal.

Sudiksha grew up in a tightly knit Christian family who, prior to getting in touch with the Christian Legal Centre, had spent all their savings to pay lawyers to resist the legal proceedings brought by the NHS to end her life.

Despite her illness, Sudiksha attended a regular school, achieved good GCSE results and was studying for her A levels when her health deteriorated after catching Covid in August 2022.

Sudiksha and her family did not accept this plan, with the 19-year-old saying that “we have to try everything”.

Instead of supporting and respecting Sudiksha’s wishes, bosses at University Hospitals Birmingham NHS Foundation Trust requested and secured a severe gagging order from the Court of Protection without giving any reasons.

The gagging order prevented Sudiksha from telling her story to the media and fundraising to help support her bid to have specialist nucleoside treatment abroad.

The family would be criminalised if they breached the order which put immense pressure on them.

The parents made an urgent application to reconsider the ‘transparency order’ to enable them to tell their story and raise funds for Sudiksha’s treatment in Canada. However, despite the court holding numerous hearings following this application, it found no time to consider it until after Sudiksha had died.

Instead, the Trust dismantled every right Sudiksha and her family had over her life, said she was ‘deluded’ for wanting to live and pushed for a capacity hearing at the High Court to back their position and give them legal authority to end her life.

BBC investigation has subsequently found University Hospitals Birmingham NHS Foundation Trust to have a ‘toxic’ and ‘mafia-like’ working environment and is the lowest performing in the country.

Capacity ruling

In August 2023, a judgment from Mrs Justice Roberts ruled that Sudiksha did not have capacity to make her own decisions, despite two expert court appointed psychiatrists saying that she did.

The ruling concluded:

“In my judgment… Sudiksha is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors.”  [para 93]

A media and public outcry followed the ruling. One front page headline read: “I’ll Fight Doctors Who Say I Should Be Left To Die”and included an anonymised interview via her lawyers with ‘ST’ as she was known under the transparency order.

Sadly, after finally being able to tell her story, Sudiksha died on 12 September 2023.

Even in death, however, due to the gagging order, Sudiksha’s family were not able to name her or themselves and even feared the ramifications of telling close family members she had died.

Only weeks later was the transparency order lifted, but the naming of the hospital and clinicians involved in her care remained a secret until months later.

Outside of the Royal Courts of Justice, Sudiksha’s parents, Mr Thirumalesh Chellamal Hemachandran and Mrs Revathi Malesh Thirumalesh, and her brother Varshan Chellamal Thirumalesh, said in a statement:

After a year of struggle and heartache we can finally say our beautiful daughter and sister’s name in public without fear: She is Sudiksha. She is Sudiksha Thirumalesh not ST.

“We seek justice for Sudiksha today, and for others in her situation.

“We are deeply disturbed by how we have been treated by the hospital trust and the courts. We have been gagged, silenced and most importantly, prevented from accessing specialist treatment abroad for Sudiksha.  Had she been allowed to seek nucleoside treatment six months ago it may well be that she would still be with us and recovering.

“Sudiksha said she wanted ‘to die trying to live’. This is what she did. We are so proud of her.”

Despite her death, the family were determined to appeal Mr Justice Roberts’ capacity ruling. On 16 November 2023, Lady Justice King granted permission for them to appeal it, saying:

There is a real prospect of an appeal succeeding and there are compelling reasons for these important issues to be considered by the Court of Appeal.”

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