Critical Care

Press Release: Alfie Evans case

by Dominic Wilkinson

@Neonatalethics

In the light of the media attention today, I have gathered together some of the material relating to the ethics of this case

 

Previous blog posts:

Groundhog Day and Legal Appeals. (What if Alfie Were a Texan?)

Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…

Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case

Medical treatment disputes and the international second opinion

See here for ethics commentary and resources on the Charlie Gard case.

 

Below are responses to some of the questions commonly asked in relation to Alfie’s case

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.

 

 

 

Groundhog Day and Legal Appeals. (What if Alfie Were a Texan?)

By Dominic Wilkinson

@Neonatalethics

 

According to media reports, the family of seriously ill infant Alfie Evans have decided to lodge a second appeal to the Supreme Court today. This is the 6th legal appeal mounted since the High Court decision, on the 20th February, that continued medical treatment was not in Alfie’s best interests. There is no prospect that this latest legal appeal will be any more successful than the previous ones – its only effect will be to delay the inevitable decision to withdraw life-prolonging medical treatment.

However, the appeal raises an important question in relation to disputed medical treatment. The UK legal appeal system gives families the opportunity to delay decisions that they do not agree with by mounting a series of appeals. (The Court of Appeal judges yesterday referred to this as akin to a form of legal “Groundhog day” with the judges revisiting the same arguments over and over again.)  While the family of Alfie Evans may not succeed in their aim to take him overseas for medical treatment, they have achieved almost 2 months of additional intensive care for Alfie – two months of treatment that has been legally judged to be not in his interests.

Is there an alternative to the existing legal process? Is there a way to avoid protracted legal appeals in cases of disputed medical treatment?

Continue reading

Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case

by Dominic Wilkinson

@Neonatalethics

[Updated 22/02/18]

This afternoon, in another case of disputed medical treatment for a seriously ill child, Justice Hayden in the High Court concluded that treatment should be withdrawn from toddler Alfie Evans against the wishes of his parents.

See below for a press release on the Alfie Evans decision. I will add further reports and links to the court transcript when it is available.

See here for ethics commentary and resources on the Charlie Gard case.

See also my recent blog on the Evans and Haastrup cases: Medical treatment disputes and the international second opinion

Details from the court ruling (Liverpool Echo)

Court judgement

Continue reading

Medical Treatment Disputes and the International Second Opinion

By Dominic Wilkinson

@Neonatalethics

 

Disputes about medical treatment for seriously ill children are in the news again. Last week, the High Court in London decided in favour of withdrawal of life support from a brain damaged 11-month old infant, Isaiah Haastrup, against the wishes of his parents (an appeal is pending later this month). This week, the High court, sitting in Liverpool, is hearing evidence in the case of 20-month-old Alfie Evans, an infant with an undiagnosed degenerative brain condition.

In both of these cases, as in the controversial Charlie Gard case from last year, medical evidence from UK professionals has been overwhelmingly in favour of withdrawing life support and allowing the children to die. However, in each case parents have sought and have obtained evidence from overseas medical specialists who have testified in favour of continued treatment. In the Evans case, as in the earlier Gard case, experts from the Vatican hospital in Rome have apparently offered ongoing treatment.

This suggests several questions. First, why is there a difference between the views of specialists in this country and those overseas? Second, if there are differences in expert opinion about treatment for a child, should courts give any more weight to the views of UK experts than those from overseas? Is there a valid reason to discount the international second opinion?

Continue reading

Webinar – Charlie Gard Case: Questions and Lessons

by Dominic Wilkinson (@Neonatalethics)

Webinar given recently for the Children’s Mercy Centre for bioethics as part of the excellent (and free) Children’s Mercy webinar series (great resource for those interested in paediatric bioethics) Continue reading

‘Being a burden’: an Illegitimate Ground For Assisted Dying

The issue of the legality in England and Wales of physician-assisted suicide has recently been revisited by the Divisional Court. Judgment is awaited. The judgment of the Court of Appeal, granting permission for judicial review, is here.

The basic issue before the Court of Appeal was the same as that in Nicklinson v Ministry of Justice and R (Purdy) v DPP: does the right to determine how one lives one’s private life (protected by Article 8 of the European Convention on Human Rights)  confer a right to have an assisted death?

Many factors have been said to be relevant to decisions about assisted dying. They include intractable pain (rather a weak criterion, given modern palliative methods), hopeless prognosis – likely to result in death in a short time –  and simple autonomy (‘It’s my right to determine where, when, and in what circumstances I end my life, and that’s an end of the matter’). One factor, commonly in the minds of patients asking for help in ending their lives, but rarely mentioned by advocates of assisted dying, is that the patient feels that she is a burden to her family and carers. Continue reading

The ethics of treatment for Charlie Gard: resources for students/media

by Dominic Wilkinson and Julian Savulescu

 

The case of Charlie Gard has reached its sad conclusion. However, it continues to attract intense public attention. It raises a number of challenging and important ethical questions.

The role of Practical Ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard, but agree on the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection.

We have collected together below some of the materials on the Charlie Gard case that we and others have written as well as some relevant resources from our earlier work. We will update this page as more material becomes available. (*Updated 10/11/17) Continue reading

Video Series: Professor Julian Savulescu argues in favour of an experimental treatment for Charlie Gard

The sad case of Charlie Gard and the rights *and wrongs* of experimental treatment

By Dominic Wilkinson @Neonatalethics

 

In a blog post published yesterday, Julian Savulescu argues that Charlie Gard should have received the experimental treatment requested by his parents 6 months ago. He further argues that “we should be more aggressive about trials of therapy where there are no other good options”.

I have previously argued (in a blog and in an editorial in the Lancet) that the requested treatment is not in Charlie’s best interests. In a forthcoming paper (co-authored with John Paris, Jag Ahluwahlia, Brian Cummings and Michael Moreland), we compare the US and UK legal approaches to cases like this, and argue that the US approach is deeply flawed.

Here are four areas where I agree with Julian

  1. In retrospect, it would have been better for Charlie to have received the requested treatment 6 months ago than to have a protracted legal dispute (with continued treatment in intensive care anyway)
  2. We should generally allow patients who are dying or severely ill, without other available treatment, to try experimental treatment if that is something that they (or their family) strongly desire
  3. If experimental treatments are unaffordable in public health systems but patients are able to pay for them privately, or have crowd-sourced funding for them, they should be made available
  4. Experimental treatments should not be provided where the side effects make that treatment highly likely not to be in the patient’s interests.

However, despite these areas of common ground, I reach starkly different conclusions from Julian. In my view, the doctors were right to oppose experimental treatment for Charlie in January, the judges were right to decline the family’s request for treatment in April, and it would be deeply ethically problematic to provide the treatment now, notwithstanding the recent intervention of the US president and the Pope. Continue reading

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment. Continue reading

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