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A one-year-old boy suffering from a “severe, progressive and irreversible neuromuscular disease” has died at Great Ormond Street Hospital after a UK High Court judge ruled his life-sustaining care should end. While lawyers for the hospital argued that the burden of treatment outweighed the limited benefits he could enjoy, Ayden Braqi’s mother remained opposed to the bid. Ayden had been admitted to the hospital when he was just three months old and remained there until he died. The hearing revealed that Ayden was “cognitively intact” and could “see, hear, smell, feel, and enjoy” and that his mother would sometimes spend around 16 hours a day with him.
In a statement, a spokesperson for GOSH said that Ayden’s family had “fought unstintingly” for him and that staff had the best interests of every child at the heart of their decisions. The spokesperson added that going to court was the “very last resort” and that “all other avenues” had been exhausted. Everyone involved had “always wanted the very best for him”, but “unfortunately, sometimes not everyone agrees with what is best”. The hospital apologised for the distress caused to Ayden’s family and said that its teams would continue to do all they could to support them.
The hospital’s last-resort decision to go to the courts, as well as the ultimate decision taken by the judge, highlights the complex ethical questions around the often-unspoken question of euthanasia by omission. In end-of-life care situations, doctors can withdraw or withhold care if they believe it is in the patient’s best interests. The case reminds us, however, that personal emotions and subjective beliefs can clash with such decisions. Ultimately, it is up to society to decide if ethical rules have been breached or whether hospitals and courts have worked within the law
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