A 19-year-old English Christian woman, identified by her family as Sudiksha Thirumalesh, died last week after a court prevented her from seeking experimental treatment for her rare, supposedly incurable disease.
It all started after the hospital where the patient was admitted went to court requesting her transfer to palliative care, as her clinical condition could not improve, according to some doctors who treated her. Both the young woman and her family were against the decision from the beginning.
Even with the health service’s positioning, the patient discovered an experimental treatment with nucleosides carried out in Canada, which could offer her a better quality of life, although it was a life that would probably end prematurely.
Faced with the possibility of continuing to live, he decided to choose this path. However, his expectations were terminated by a court ruling from a British court, which prevented the treatment from being prolonged.
“ST is unable to make a decision for herself regarding her future medical treatment, including the proposed move to palliative care, because she does not believe the information provided to her by her doctors. In the absence of this belief, she cannot use or consider this information as part of the decision-making process”, says an excerpt from the judgment.
“The decision must involve essential understanding of the information and the use, weighting and balancing of the information to arrive at a definition. In ST’s case, an essential element of the decision-making process is missing because she is unable to use or consider information that proved to be reliable and true”, says another excerpt.
According to the portal Christian PostSudiksha had been embroiled in the legal battle for more than six months, seeking permission to go to Canada to participate in experimental nucleoside treatment for her rare mitochondrial genetic disease.
The UK non-profit advocacy group, Christian Concernwho was involved in the case, stated that the Court of Protection under English law, a higher court set up to represent people without the mental capacity to make decisions for themselves, banned the young woman and her family from raising funds for her treatment, stating that Sudiksha did not have the capacity to make such decisions.
In a statement, the family said: “We are deeply disturbed by the way we have been treated by the hospital trust and the courts. If she had been allowed to seek nucleoside treatment six months ago, she could be here with us, recovering.”
Andrea Williams, executive director of the legal arm of Christian ConcernO Christian Legal Centerstated that “the case is deeply disturbing and demonstrates the urgent need for a review of the way critical care decisions are made in the National Health Service and in the courts.”
Two doctors who monitored Sudiksha’s situation said in the lawsuit that she had the mental capacity to make decisions about her own treatment. However, the Court ruled that she was “beside herself” for wanting to live, based on the hospital’s assessment of her condition.
According to the Christian Post, the young woman comes from a Christian family who spent all their savings on legal fees to resist the Health Service’s efforts to end her life. She had been in the ICU since her health worsened after contracting Covid in 2022.
Earlier this year, the hospital asked the Court to nullify a Durable Power of Attorney document that Sudiksha had issued, authorizing her parents to make decisions on her behalf. The Court accepted the request and changed the young woman’s treatment to palliative care, which led to her death within a few days.
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