A 4-year-old has become the first patient known to British medical history to be taken off life-support and proceeded to recover—so much so that he went home with his parents.
This story revolves around a sensitive topic about terminally ill patients, decisions around the ends of lives, sometimes young ones, and what roles do parents, physicians, or courts play in making those decisions.
The decision to take him off life support was ordered by the UK High Court following a hearing in which the boy’s doctors said the artificial ventilation was not leading to any improvement and that his condition, involving severe brain abnormalities, continued to deteriorate.
Referred to as NR in the case for confidentiality, Justice Poole, the presiding judge, said it was a “delight” to see this “remarkable boy” home with his “devoted parents.”
“I do not wish to minimize the emotional turmoil suffered by Mr. and Mrs. R and the continuing burdens that NR suffers because of his conditions, but it seems to me to be a wonderful surprise that NR has confounded expectations, that he no longer requires continuing invasive interventions and, in particular, that he has been able to return home to the loving care of his devoted parents,” Poole said, according to the BBC.
It’s been several months of home care during which NR has been able to play outside at a park, “feel the wind in his hair and the sun on his face,” aspects which led Poole to reverse the previous ruling which would have given physicians legal protection for withholding certain invasive treatments, as well as CPR—in a word because it would only prolong a largely empty, suffering life.
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“A decision to withdraw life-sustaining treatment is not a decision to bring about the death of a patient, but a decision that the continuation of the treatment is not in their best interests,” Judge Poole clarified, who said that at the time of the ruling, the only identifiable pleasure in NR’s life was the consoling touch of his parents.
NR continues to improve. He no longer requires ventilation and recently stopped relying on a urinary catheter.
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NR will now receive treatment, even in the case of an emergency return of past symptoms, like a normal boy. Past periods on life support will not influence any treatment decisions—which his mother says he “deserves” after fighting back from so long a period on the brink.
The court said the emergence of NR’s recovery will raise challenging questions for future court rulings on the topic.
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