The test to declare someone brain dead in the UK is under review, Sky News can confirm.
Medics and ethicists at the Academy of Medical Royal Colleges (AOMRC) are re-writing guidance on brain stem testing, the legal criteria for brain death used by hospitals to end life support treatment in those with severe brain damage.
On Thursday, a senior doctor told the High Court she was “shocked” when a baby declared brain stem dead following two tests began breathing by himself two weeks later.
The court heard that ventilation continued on the four-month-old after he was declared dead because there was an ongoing legal dispute.
In July doctors treating him at a London hospital were forced to rescind “the clinical ascertainment of death” after a nurse noticed the infant had independent rhythmic breathing.
Mr Justice Hayden, who has been asked by Guys’ and St Thomas’ NHS Foundation Trust to decide what is in the baby’s best interests, said the juxtaposition of a baby being declared dead but then breathing independently is “striking even for those of us experienced in these cases”. He called the test “unreliable”.
The doctor said “we continued ventilating a dead baby” before adding “none of us have seen this before”.
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“It must be just beyond comprehension (for the parents) that doctors looking after their baby can have made what appears to be such a horrible error,” she said.
“I can only say that I am terribly sorry for what has happened.”
The doctor said the “wording” of the test could be changed to include a warning about the test’s reliability.
She said she had approached the AOMRC to explain what happened, saying it would be “problematic” if news of the test’s unreliability “got out in the public domain”.
The brain stem test is a clinical test done when there is clear evidence of serious brain damage which cannot be cured. It is a series of mini-tests to check the brain’s automatic functions including reaction to light in the eyes, ice-cold water in the ear and a short period off a ventilator to see whether a patient attempts to take a breath.
In March 2021, 18-year-old Lewis Roberts was declared brain stem dead following a road accident but began breathing independently hours before his organs were to be extracted for donation. Today he is well enough to play football and basketball.
Last month his sister told Sky News the test is done too soon.
“They rushed it through,” she said.
“Eight months ago he was sat in a wheelchair, his eyes were gone, he couldn’t speak. From how he was then, to how he is now, that just shows that the brain can heal given the time.”
A second doctor in Thursday’s High Court hearing said despite evidence from thousands of patients, the baby’s case showed there is an issue with the test’s verification process.
“Brain injuries need time to assess fully, to understand what is permanent damage and what is temporary.”
“The preconditions of brain stem testing need to be reconsidered in smaller children,” he said, before recommending a longer period of observation in hospital before a test is conducted.
The AOMRC declined to comment but confirmed to Sky News that the brain stem test is now under review and expected to have new guidelines in 2023.
