Alfie Evans: The significance of terminally ill boy being able to breathe on his own

Case has attracted international coverage, with interventions from US politicians and the Pope

Andrew Griffin@_andrew_griffin
Tuesday 24 April 2018 16:14
Alfie Evans' father: 'He's been breathing on his own for nine hours'

The announcement that Alfie Evans was breathing on his own after life support was withdrawn has brought fresh attention to the controversy over how the terminally ill child should be treated.

Parents and supporters have suggested the development could mean doctors should not have cut off life support, while some have implied it shows medical experts were wrong to give up on the 23-month-old.

However, doctors have sought to clarify the significance of recent events, suggesting they shone a light on the sensitive and difficult decisions that had to be made while treating children.

They say they fact he was now breathing on his own was in line with what was expected – and does not mean that the doctors in the case were wrong.

Alfie is in a "semi-vegetative state" as a result of a degenerative neurological condition doctors have been unable to identify. He was taken off life support after a series of court rulings backed doctors who said further treatment was futile.

His parents and their supporters have continued to argue that he should be allowed to receive further treatment. But doctors and courts have said such a move would not be in the child's best interests – a decision that has prompted considerable outcry from those who say the parents should be allowed to take him all the same.

Experts said such a decision would never be taken lightly, and that it would always be done with the full consideration of what was best for Alfie. Though there may be disputes about their care, most cases are worked through with the full co-operation of the medical team and the family – but do not necessarily receive the same amount of press coverage as those in which there is a dispute between the two parties.

“Decisions on whether to withdraw treatment from a child are unfortunately ones that need to be made frequently," said Russell Viner, president of the Royal College of Paediatrics and Child Health. "The model is always for doctors to work closely with parents to agree on the best course of action for the child.

"In the vast majority of cases an equal decision is made to withdraw treatment and it is rare that there is disagreement. The cases where this is a significant difference in view are the ones that grab the media headlines."

Since that decision was made, and Alfie was taken off life support, the family said their child had been breathing on his own. Father Tom Evans said his 23-month-old son survived for six hours with no assistance, and that doctors were now providing oxygen and hydration.

Experts said the possibility the child continued breathing would have been factored into the decision to stop the support machines, and that it did not necessarily come as a surprise.

“In the last few hours, news reports have indicated that life support has been withdrawn from Alfie, and that he is breathing by himself," said Dominic Wilkinson, consultant neonatologist at the John Radcliffe Hospital and director of medical ethics at the Oxford Uehiro Centre for Practical Ethics at the University of Oxford.

“That does not mean that doctors were wrong, and it does not mean that breathing support should be restarted.

“The reason for stopping the breathing machines is simply that his serious condition is not treatable, and will not improve. He has deteriorated over the many months that he has been on life support. The breathing tubes and machinery used to keep Alfie alive can cause discomfort and even pain to children. Given the nature of Alfie's condition, the doctors have wanted to provide him with palliative care, focused on his comfort, and focused on making his remaining time as good as possible.

“Whenever I provide palliative care to children, I talk to families about uncertainty. When we stop breathing support for a child, sometimes the child will slip away very quickly. Sometimes, they will be with us for minutes or hours, or even days. Sometimes, when the breathing machine is removed, it becomes clear that actually the child didn't need the machine, and they remain with us for much longer. When that happens, it is not something to fear, or to regret, but an opportunity to embrace - to spend more time with a child, without the machinery, wires and medical interventions in the way.

“Providing palliative care is not euthanasia. It is about providing 'intensive caring' rather than intensive medical care. It does not end the child's life. Rather, it supports the child, and the child's family, for as long or as short as they remain with us.”

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