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expert reaction to the ongoing Alfie Evans case

Alfie Evans has been in Alder Hey hospital, in Liverpool, since December 2016 with a rare undiagnosed degenerative neurological condition. His father has reported that Alfie’s life support has been turned off.

 

Prof Russell Viner, President of the Royal College of Paediatrics and Child Health, said:

“The Alfie Evans case is extremely difficult for all involved; heartbreaking for his parents and emotionally challenging for the doctors and nurses involved in treating and caring for him.

“As healthcare professionals involved in the care of babies, children and young people, it is quite clear: the priority has to be the child.  Every action and decision is taken in the best interests of the child, and decisions on care, including the withdrawal of treatment, are always made with the involvement of parents.

“We can’t comment on the specifics of the case – only the medical team treating Alfie, and the legal team, will know the exact details and they are bound by patient confidentiality.

“However, we feel it is important for the public to know that decisions to withhold or withdraw treatment from a child are not made lightly.  In the UK we are fortunate to have a clear and compassionate framework to guide practice which includes three key sets of circumstances when withdrawing life-sustaining treatment may be considered. These are:

  • If treatment is unable or unlikely to result in the child living much longer
  • Where treatment may prolong life but will cause the child unacceptable pain and suffering
  • If an older child with a life limiting illness repeatedly makes it clear they do not want treatment and this decision is supported by their parents and doctors.

“Decisions on whether to withdraw treatment from a child are unfortunately ones that need to be made frequently. 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.

“In difficult situations such as these, and amongst the plethora of voices and opinions, it is important that the public know how such decisions are made.”

 

Prof Dominic Wilkinson is 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.  He has put together some answers to the following questions:

The doctors don’t know what is causing Alfie’s illness. Why do they want to stop life support?

“The exact cause of Alfie’s condition is not known – there is no diagnosis, which can make it hard to know what the future holds. However, in Alfie’s case, the future, sadly, appears clear. Multiple medical specialists gave evidence in the case. Brain scans have shown severe deterioration over time. The judge in the original court hearing described scans showing that large areas of the brain have been “wiped out”. Alfie has been totally dependent on life support. He has profound neurological damage. There appears to be no prospect of recovery, and no specialists in this country or overseas have identified any tests or treatment that have a real chance of making him better.

“It is devastating news for any parent to hear that their child is gravely ill.  It is especially difficult in situations when doctors cannot be sure of the exact cause of the child’s illness. However, sadly, despite all of our advances in genetics, it is still sometimes impossible to make an exact diagnosis in a seriously ill child.”

 

Where there is life, there is hope? Shouldn’t Alfie’s parents be allowed to hold on to hope?

“It is very understandable for parents to want to hold on to hope, to exhaust every possibility that might make their child better. However, sometimes the sad fact is that medicine cannot cure or improve a child’s condition. Sometimes the only hope that remains is that a child’s suffering is not prolonged.”

 

Overseas doctors have offered treatment for Alfie, why shouldn’t his parents be allowed to take him overseas?

“In a previous blog post, I discussed some of the reasons why evidence from overseas experts sometimes is relevant, but sometimes is not relevant to cases of disputed treatment.

“In another recent case, the judge noted “There is a world of difference between a foreign expert who may have relevant medical or scientific expertise … and whose evidence may … be necessary to resolve the proceedings justly, and a foreign expert who simply takes the view that the medical, moral or ethical approach to these issues in this jurisdiction differs from that in their own jurisdiction or their own practice, and that the approach in their jurisdiction or their own practice is preferable.”

“In Alfie’s case, none of the foreign experts have offered any new treatment, or any new outlook for Alfie. The Italian specialists have apparently indicated that they believe that his care should be palliative.

“However, some of the overseas experts appear to have different ethical views about how best to care for a child who is dying. They appear to believe that life should be prolonged at costs or that parents are always right when it comes to decisions about medical treatment for a child.

“That is not the ethical framework that doctors and the courts use in this country. Medical treatment is often helpful for a child. Parents’ views are extremely important for decisions about treatment for children. However, sometimes the sad fact is that medicines or machines are not helping a child, and, in fact, are doing more harm than good. Sometimes the sad fact is that parents do not know what is best for their child. They are led by their grief and their sadness, their understandable desire to hold on to their child, to request treatment that will not and cannot help.

“In that circumstance, it is wrong to continue to provide those treatments, and doctors and the courts in this country have felt that they should not be provided, even if parents would wish them to be.”

 

Alfie is breathing by himself, does that mean doctors were wrong?

“In the last few hours, news reports have indicated that life support has been withdrawn from Alfie, and that he is breathing by himself.

“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.”

 

Our previous roundups on this story can be seen here:

http://www.sciencemediacentre.org/expert-reaction-to-recent-reports-that-alfie-evans-can-respond-to-touch/

http://www.sciencemediacentre.org/expert-reaction-to-the-court-ruling-on-alfie-evans/

 

Declared interests

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