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 It is expected that life support will be withdrawn in the days ahead.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. Continue reading
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 outcome for Charlie’s family. They have had to accept the devastating news that their beloved son cannot recover and that their hopes for an experimental treatment cannot be realised.
There are important lessons to learn from this case. Cases of deep disagreement between parents and doctors about treatment for a child are rare. Where they occur, it is often possible with time, patience, and support to find common ground. Where agreement cannot be reached, there is an important role for the courts in helping to reach a decision. However, court review of cases like this is not ideal. It is adversarial, costly, and lengthy. In this case, Charlie has received months of treatment that doctors and nurses caring for him felt was doing him more harm than good.
We need to find better ways to avoid cases of disagreement from coming to court. There is an important role for mediation to help parents and doctors where they have reached an impasse.
We also need a fair, expedient way of resolving disputes. This would mean that patients can access early experimental treatment if there is a reasonable chance that it would not cause significant harm. It would also mean that futile and harmful treatment is not prolonged by a protracted legal process.
Medical tourism for controversial treatment options
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? 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 4/8/17) 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
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
Agreement and disagreement about experimental treatment. The Charlie Gard Appeal
by Dominic Wilkinson and Julian Savulescu
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
Debate Response: Charlie Gard, Interests and Justice – an alternative view
Dominic Wilkinson
Responding to Julian Savulescu
The sad and difficult case of Charlie Gard, which featured in the media last week, is the latest in a series of High Court and Family court cases when parents and doctors have disagreed about medical treatment for a child. Doctors regard the treatment as “futile” or “potentially inappropriate”. Parents, in contrast, want treatment to continue, perhaps in the hope that the child’s condition will improve. In the Charlie Gard case, the judge, Justice Francis, rejected Charlie’s parents’ request for him to travel to the US for an experimental medical treatment. He ruled that life-sustaining treatment could be withdrawn, and Charlie allowed to die.
Two reasons
As Julian Savulescu argues,there are two different ethical reasons for health professionals to refuse to provide requested medical treatment for a child. The first of these is based on concern for the best interests of the patient. Treatment should not be provided if it would harm the child. The second reason is on the basis of distributive justice. In a public health system with limited resources, providing expensive or scarce treatment would potentially harm other patients since it would mean that those other patients would be denied access to treatment.
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 here. Continue reading
The bright side of Brexit
Let’s suppose, entirely hypothetically and for the sake of argument, that Brexit is a disaster for the UK. Let’s suppose that sterling crashes; that foreign travel is punishingly expensive and that, if you can afford to go abroad, you’re a laughing stock. Let’s suppose that the Treasury’s estimates of billions of pounds of losses each year are reasonably accurate; that unemployment rises; that credit ratings plummet. Let’s suppose Brexit creates a corrosive tide of racism; that things that should never be said, and can never be unsaid, are shouted at high volume. Let’s suppose that there’s a torrential brain drain; that UK universities fall down the international league tables; that the innovative treatments prescribed (to private patients only, unfortunately – no money left for the NHS) by the UK’s (predominantly white) doctors are all devised in New York, Paris and Rome rather than London and Leeds. Let’s suppose that the environment, unprotected by EU legislation, is trashed, and that Scotland leaves the UK. Let’s suppose, too, that nervousness about all this creates an increasingly authoritarian style of government .
If all that happens, it’ll be great. At least if you’re a consistent utilitarian. The horror of the UK’s experience will strengthen the EU and prevent other countries from thinking that they should leave the Union – which would have similarly disastrous results for them and, if the EU itself dissolves, tectonic consequences for the stability of the world. Continue reading
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