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The final move in the legal battle over the life and probable death of 11-month-old Charlie Gard has taken place in London.
Should he receive experimental treatment, as his parents, US President Donald Trump and Pope Francis have urged? Or should his ventilator be removed, so that he can "die with dignity", as his doctors and all the courts to consider the case have so steadfastly maintained?
Charlie was born in August 2016 with a rare genetic disorder. It meant that the mitochondria, or the powerpacks of every human cell, do not work.
In September he became ill and was put on a respirator in intensive care. In December he began having fits.
In November, his mother Connie Yates made contact with the parent of a child with a related but milder form of the condition. This child had received experimental therapy in the US.
The experimental treatment was considered but Charlie's doctors decided his brain damage was irreversible. Charlie's parents, Connie and Chris, wanted a trial of treatment and began crowd sourcing funding to take him to the US. They raised $2.5 million.
Photo:
Baby Charlie with parents Connie Yates and Chris Gard in hospital. (Facebook: Charlies Fight)
Charlie's doctors at Great Ormond Street Hospital in London applied to the High Court for permission to withdraw the respirator and allow him to die with dignity.
Every UK doctor agreed that this was the right course to take, and the High Court took this view as well. So did the UK Supreme Court. The European Court of Human Rights rejected a plea from the parents to intervene.
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There was one lone dissenting voice, an independent expert on the experimental therapy, "Dr I" from the US.
He had treated nearly 20 patients with a related condition, with some effect, but he had not treated anyone with Charlie's more severe condition. He said the chances of improvement were low but not zero.
At the eleventh hour, a social media campaign, probably assisted by various interest groups, drew the case to the attention of Mr Trump, several members of the US Congress and the Pope. All have sided with the Gards.
Unexpectedly "new" evidence emerged and a letter involving seven experts in nucleoside replacement therapy was sent to Great Ormond Street Hospital urging it to reconsider. Dr I was no longer alone. The hospital agreed to present the new evidence to the High Court and ask it to alter its earlier decision. The case is now being heard.
The key issue is whether Charlie's life would so bad that it would be not worth living even after the experimental treatment.
Dr I had recommended three months of treatment and then a reassessment.
How can you tell if life is worth living?
To show that it is in someone's best interests to die, it is necessary to set out the criteria for when life is worth living, and provide an account of what makes it reasonable to take a chance of securing a life worth living.
Both of these are profoundly difficult ethical issues. Are we aiming at mere consciousness, a balance of pleasure over pain, some degree of social interaction, communication, ability to move, or some combination of these? You need to set the finishing line in order to decide how far you are from it.
There is general agreement among all clinicians, most ethicists (including us) and the parents that Charlie Gard's life is currently not worth living. The key disagreement is about what chance is worth taking of crossing the line to have a life worth living.
In March, Dr I, now joined by others in the Vatican Hospital, argued that it would be worthwhile to treat Charlie.
His brain structure at that time was normal, even though he had abnormal electrical activity. In our view, based on what appears to be credible unbiased expert testimony, it is uncertain whether such treatment is genuinely "futile" or not in Charlie's interests.
In the face of uncertainty, it is reasonable to gather more information. A trial of experimental treatment would provide more information about the prospects and nature of any possible improvement.
The only significant downside of such a trial (apart from cost, which in this case is irrelevant because the money has been raised privately for this purpose) would be the pain and discomfort of three further months of intensive care. But Charlie has already had six months of that.
If we had to consign Charlie to 10 years of life in his current state, we would agree with withdrawal of treatment.
But that is not what is being proposed: it is three more months of intensive care and reassessment of his progress and withdrawal then if there is no progress.
It is a value judgement (not a scientific judgement) whether the pain of three months of intensive care (minimised by sedation and analgesia) is worth taking to gather more information about the prospect of improvement with experimental therapy.
This is an issue on which there is reasonable disagreement. Many doctors and ethicists believe it is not, some doctors (such as Dr I, and now six other experts) and some ethicists believe it is worth taking this chance, even if it is a slim one.
In the face of such reasonable disagreement, we believe that we should accede to the wishes of the parents and err on the side of a chance of life. The alternative is certain death.
Julian Savulescu is Uehiro Professor of Practical Ethics at the University of Oxford and visiting professorial fellow at Murdoch Childrens Research Institute, Melbourne.
Peter Singer is Ira W. DeCamp Professor of Bioethics at Princeton University and laureate professor at University of Melbourne.
Topics: family-and-children, philosophy, medical-ethics, united-kingdom
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