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Dominic Wilkinson

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medical treatment for a seriously ill child, Justice Hayden in the High Court concluded that treatment should be withdrawn from toddler Alfie Evans against the wishes of his parents.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

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

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?

Read More »Medical Treatment Disputes and the International Second Opinion

Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important 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,1 2 but we agree on the key ethical principles as well as 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. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.Read More »Hard lessons: learning from the Charlie Gard case

Press Release – “The Worst Outcome” Prof Dominic Wilkinson

This afternoon the long-running, deeply tragic and emotionally fraught legal dispute over treatment of Charlie Gard reached its sad and sadly inevitable conclusion. Following further medical assessment of Charlie by several international experts, Charlie’s parents and doctors finally reached agreement that continuing life support and experimental treatment could not help him. This is the worst possible… Read More »Press Release – “The Worst Outcome” Prof Dominic Wilkinson

Press Release – “Vale Charlie” Prof Julian Savulescu

Vale Charlie

At some point in all of our lives, we have to let go. One can only admire Connie Yates and Chris Gard who fought so hard for Charlie.

 

However, we should continue to question the original decision, and the way in which these decisions are made. Even if it is too late for Charlie now, we should improve how we make these decisions for the future.

Read More »Press Release – “Vale Charlie” Prof Julian Savulescu

Medical tourism for controversial treatment options

By Dominic Wilkinson

 

Baby C’s parents had done their research. They had read widely about different options for C and had clear views about what they felt would be best for their child. They had asked a number of doctors in this country, but none were willing to provide the treatment. After contacting some specialists overseas, they had found one expert who agreed. If the family were able to pay for treatment, he was willing to provide that treatment option.

However, when C’s local doctors discovered that the parents planned to leave the country for treatment the doctors embarked on court proceedings and contacted the police.

One of the questions highlighted in the Charlie Gard case has been whether his parents should be free to travel overseas for desired experimental treatment. It has been claimed that the NHS and Great Ormond St are “keeping him captive”. Why shouldn’t C’s parents be free to travel to access a medical treatment option? When, if ever, should a state intervene to prevent medical tourism?Read More »Medical tourism for controversial treatment options

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)Read More »The ethics of treatment for Charlie Gard: resources for students/media

Burke, Briggs and Wills: Why we should not fear the judgment in Charlie Gard

In a blog post today, Julian Savulescu argues that in a parallel adult version of the highly controversial Charlie Gard case, a UK court might thwart an unconscious patient’s previously expressed desire for self-funded experimental medical treatment. He finds the Gard decision deeply disturbing and suggests that we all have reason to fear the Charlie Gard judgment.

I respectfully beg to differ.

Julian’s thought experiment of the billionaire ‘Donald Wills’ is not analogous to the real Charlie Gard case, his analysis of the UK legal approach to best interests cases for adults is potentially mistaken, his fear is misplaced.Read More »Burke, Briggs and Wills: Why we should not fear the judgment in 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.Read More »The sad case of Charlie Gard and the rights *and wrongs* of experimental treatment