Dominic Wilkinson, Consultant Neonatologist and Professor in Medical Ethics, argues that Charlie Gard should be allowed to die and that disagreement about this case is not necessarily ‘reasonable’ disagreement. He also explains what could possibly change his mind about the case.
The Case of Donald Wills
Donald Wills is a self-made man. He is billionaire British banker who has taken an interest in technology. He believes the Singularity is near and wishes to live as long as possible. He completes an advance directive to use his money to keep him alive at all costs, should he become ill and unable to express his wishes. He tells his wife about these desires.
Donald develops a rare condition where the mitochondria in all his cells stop working. The mitochondria are power packs for every cell. Donald’s muscles stop working and he is admitted to a famous London hospital and has to be put on a breathing machine. His brain is affected- he suffers fits which need to be controlled by medication. There is no known cure and he is going downhill.
Doctors call in his wife and explain his dismal prognosis. “It is,” they say, “in his best interests to stop this burdensome treatment in intensive care. He will never regain normal brain function but he is conscious at times and feels pain. He should be allowed to die with dignity.” After all, Donald is 75.
Read More »Burke and Wills, Bowen and Gard: The English Courts, Best Interests and Justice
Peter Singer has probably done more good than many of us will ever do. Despite this, he has received threats, people have protested to stop him from lecturing, his views have been compared to those defended by Nazis, etc. How has this affected him? Should we ever refrain from defending controversial views? Is it okay… Read More »Video Series: Peter Singer on the Pros and Cons of Defending Controversial Views
We know that groups are internally diverse. For any group you care to pick out (Brexit supporters, feminists, tea drinkers), we know intellectually that they will disagree among themselves about a great deal. When people identify as a group member, they may feel pressure to conform to the group view, but there are countervailing pressures in the other direction which limit the effects of group conformity. Disputes internal to groups are often as – or more – heated than those between them.Read More »How Social Media Distorts Our Perceptions of Groups.
Julian Savulescu and Peter Singer Charlie Gard should have been allowed to go to US for experimental treatment back in April (or better January when it was first considered) because there was some possibility of him having a life worth living after treatment. That possibility may have been slim, but it does not appear (to… Read More »Revised Press Statement: Gard Legal Decision Questionable on Secular Ethical Grounds
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
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
The tragic case of Charlie Gard has captured the imagination of social media, the Pope and President Trump. All of Charlie’s legal options appear to have been exhausted so, despite the tsunami of opinion, it looks like treatment will be withdrawn, barring some act of God or other authority.
I argued back in April and then in May that it would be reasonable to give Charlie a trial of experimental treatment for a fixed period, say 6 months. The treatment was not going to make him worse and there was a non-zero possibility of some improvement. At the end of 6 months, his progress could have been reviewed and a decision then made to withdraw treatment if no significant progress had been made. I argued that we can’t be certain that his life is not worth living and we can’t be certain treatment will lead to zero improvement. I argued that the costs – 6 months of sedation and analgesia, with limited amounts of suffering associated with medical procedures, was arguably worth taking. That course was not taken.
Worst of All Possible Worlds
Charlie was born in September 2016. He was admitted to hospital in October. By January 2017, his mother had identified an experimental treatment (nucleoside replacement therapy) available in the US.
By April 2017, the Gards had crowd-sourced £1.2million to take Charlie to the US for experimental therapy. However, a judge ruled life is not in his best interests. He must die. Numerous appeals were lodged, and lost, all the way up to the European Court of Human Rights. Now the Pope and President Trump have weighed in.
It is now over 6 months since Connie Yates , Charlie’s mother, identified and petitioned for an experimental treatment. During the whole of that time, Charlie has been ventilated in intensive care, receiving no therapy offering any prospect of improvement. If treatment had been started back in January, immediately, we would now have evidence presentable to the family, courts, media and doctors of whether it was yielding any improvement, or not.
Unless the treatment itself would have serious side-effects, or was expensive, there is no downside to it being provided, especially when Charlie is being kept alive anyway. Since the parents had raised funds to provide it themselves, there is no justice or resource allocation issue.
Not providing the experimental treatment at the outset is the very worst situation for everyone:
The reasonable course of action, given the time taken by the court process, would have been to immediately start nucleoside replacement therapy at the parents’ cost (if justice precludes stricken NHS funds being used for it), while petitions to court were made to withdraw active treatment. That would have meant we would have more information about what 6 months of therapy might be able to achieve, and Charlie would have been given his fair go. It would be a better position to be in for all concerned.
Read More »The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early
Written By Mitt Regan and Michael Robillard
Various aspects of the US targeted killing program have attracted considerable attention and some criticism in philosophy and international law. One important aspect of the program that deserves more attention is how targeted killing reflects how the growing number of conflicts involving non-state actors are eroding conventions regarding the use of violence. Those conventions are based on the paradigm of conflict between states waged by uniformed armed forces on segregated battlefields. In such conflicts, an individual’s status as a member of the armed forces makes him/her liable to lethal force without examining his/her specific conduct. Non-state actors, however, do not wear uniforms and seek to be indistinguishable from civilians. What, then, should be the basis for their liability?Read More »Targeted Killing and Black Boxes
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.Read More »The non-identity problem of professional philosophers
