A 19-year-old, who died from a rare disease, has won a posthumous appeal against the National Health Service (NHS) trust to travel abroad for an experimental treatement in hopes of extending her life.
Sudiksha Thirumalesh, an Asian-origin teenager who suffered from a rare mitochondrial disorder, was involved in a legal battle with the NHS trust against being placed in end-of-life palliative care. She died following a cardiac arrest last year.
Sudiksha's family continued the legal fight on her behalf, arguing for patients' rights to decide their treatment course. A Court of Appeal judgment on Wednesday could impact future cases involving patients in similar situations.
Court documents revealed that Sudiksha was determined to explore clinical trials in North America or Canada. However, there were disagreements between her family and the medical experts over what was in her best interests.
The Court of Appeal ruled that Sudiksha had the mental ability to express her treatment wishes.
"The decisions in this case related to Sudiksha, who, notwithstanding her terrible illness, was studying for A levels before contracting COVID, which led to her long-term admission to ICU," stated the appeal judgment, presided over by Justice Eleanor King, Lord Justice Rabinder Singh, and Lord Justice Jonathan Baker.
"She was a 19-year-old young woman who was fully conscious, was not suffering from any mental illness or brain damage, and was communicating freely with both her family and the medical team caring for her. Whilst distressed on occasion, it was in the context of specific treatment. She was clear at all times in expressing her wishes, namely that she wanted to be provided with all active care possible, to try experimental treatment, and to 'die trying to live,'" the judgment read.
The court noted that all who interacted with Sudiksha agreed that she was a "remarkable" young woman who was "hardworking, determined, and resilient."
"The declaration of incapacity having been set aside, the presumption of capacity applied. It follows that, in my judgment, this remarkable young woman had the capacity to make decisions in relation to her medical treatment and therefore had her wish to 'die trying to live,'" Lady King noted as she granted the family's appeal.
(With inputs from PTI)
Martin Rosenbaum (Pic credit: rosenbaum.org.uk)
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