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Twins with incurable progressive disease can be taken off life support, High Court rules

BMJ 2015; 351 doi: https://doi.org/10.1136/bmj.h5541 (Published 19 October 2015) Cite this as: BMJ 2015;351:h5541
  1. Clare Dyer
  1. 1The BMJ

Identical twin boys with a progressive and incurable neurodegenerative disorder have died at age 14 months, after a High Court judge ruled that they should be taken off life support despite their parents’ objections.

Their Iraqi father represented himself and the boys’ mother in court, arguing through an interpreter that they should be kept alive and that it was against Islamic principles to withdraw life support before the brain had stopped functioning entirely.

But Mr Justice Holman said that it was the “tragic genetic destiny” of each boy that nature should be “permitted to take its inevitable course.” Five days after he delivered his judgment and after a discussion between doctors, the parents, and an imam, artificial ventilation was withdrawn, and the boys died. “May they rest in peace,” said the judge in a footnote to his judgment.

Central Manchester University Hospitals NHS Trust, which had cared for the unnamed boys since April 2015, brought the case to court after doctors became convinced that they were needlessly prolonging the boys’ pain and suffering and that it would be unethical to continue ventilating them.

Their condition was incurable and untreatable and had no known diagnosis, but their older sister, who died aged eight months, had probably had the same illness, the judge said. Their parents, who also have a healthy son aged 4, came to the United Kingdom in December 2014.

The conclusion of the medical evidence, said the judge, was that “the children are, in the opinion of the clinicians, cognitively unable to experience pleasure from comforting stimuli. However, there is ample evidence that they are able to, and that they do, experience pain and discomfort.” The guardian appointed to represent the boys by the Children and Family Court Advisory and Support Service agreed with the doctors’ stance.

The boys’ father had argued that a 1987 resolution by the Islamic Fiqh Council of the Muslim World League stated that life support could be withdrawn when all functions of the brain had stopped working finally.

The judge said that he could not go so far as to say that the boys’ brains had “stopped working finally” but said that they were not functioning cognitively at all and that their situation could only deteriorate progressively further. It was lawful and in their best interests, he said, for the trust to withdraw ventilation and provide them with palliative care only.

Notes

Cite this as: BMJ 2015;351:h5541

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