Disability, Chronic Conditions and Rehabilitation

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?

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

By Dominic Wilkinson

@Neonatalethics

 

In the latest case of disputed medical treatment for a child, the family of Liverpool toddler Alfie Evans yesterday lost their last legal appeal. The family had appealed to the European Court of Human Rights to examine whether the UK courts’ decision (to allow doctors to stop life support) was contrary to the European Convention on Human Rights. The European Court (as it had in two other cases in the last 12 months) rejected the appeal. It is expected that the artificial ventilation that is currently keeping Alfie alive will be withdrawn in the coming days.

This decision, difficult as it is for his family to accept, is the right decision for Alfie. Medical treatment can no longer help him. As I wrote a month ago, it is time to stop fighting, time to let him go.

However, one important legal and ethical issue raised in this case, and in the case of Charlie Gard from last year, is about the basis for deciding when parents and doctors disagree. What ethical standard should apply?

Last week, the UK Supreme Court adamantly refused Alfie’s parents’ previous legal appeal, focused on this specific question.  I will argue that the court’s arguments fail and that the current UK legal approach is mistaken. (Though in fact, in the Evans case as in the case of Charlie Gard, it seems likely that the court would have reached the same decision about treatment even if it had applied a different ethical standard).

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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

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‘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

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. 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

The non-identity problem of professional philosophers

By Charles Foster

Philosophers have a non-identity problem. It is that they are not identified as relevant by the courts. This, in an age where funding and preferment are often linked to engagement with the non-academic world, is a worry.

This irrelevance was brutally demonstrated in an English Court of Appeal case,  (‘the CICA case’) the facts of which were a tragic illustration of the non-identity problem. Continue reading

Damages and communitarianism

By Charles Foster

The Lord Chancellor recently announced that the discount rate under the Damages Act 1996 would be decreased from 2.5% to minus 0.75%. This sounds dull. In fact it is financially tectonic, and raises some important ethical questions.

In the law of tort, damages are intended to put a claimant in the position that she would have been in had the tort not occurred. A claimant who, as result of negligence on the part of a defendant, suffers personal injury, will be entitled to, inter alia, damages representing future loss of earnings, the future cost of care and, often, private medical and other treatment.

Where damages are awarded as a lump sum, there is a risk of over-compensating a claimant. Suppose that the claimant is 10 years old at the time of the award, and will live for 70 years, and the future care costs are £1000 a year for life. Should the sum awarded be £1000 x 70 years = £70,000? (70, here, is what lawyers call the ‘multiplier’). It depends on the assumption one makes about what the claimant will do with the lump sum. If she invests it in equities that give her (say) an annual 5% return, £70,000 would over-compensate her.

In the case of Wells v Wells1, the House of Lords decided that, to avoid the risk of under-compensation, claimants should be treated as risk-averse investors. It should be assumed, said the House, that the discount rate should be fixed by reference to the return on index-linked gilts – Government securities. The rate was 2.5% from 2001 until February of this year. The reasons for the change to minus 0.75% are hereContinue reading

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