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 us) to have been zero. The rational strategy was to give a trial of treatment, say 3 months, and agree with family to withdraw ventilation if there was no improvement. If this had been done, we would now have some information on whether there is any prospect of improvement..
The critical quote in the judgment of Justice Francis in the High Court back in April is from the independent US expert in nucleoside replacement therapy, Dr I:
“He said that he thought that the treatment, if administered, was unlikely to be of any benefit to Charlie’s brain. He described the probability as low, but not zero.”
Dr I said that if Charlie were his patient, he would push for a trial of treatment.
Is 3 months of suffering associated with intensive care worth taking for, say, a 1/10 000 of improvement? This is a value judgement about which there is reasonable disagreement. Sadly, Charlie has experienced the pains and discomforts of intensive care for more than six months, now without any treatment with any prospect of improving his condition.
The state should not have to pay for expensive experimental treatment with low prospect of success but Charlie’s parents have raised the funds. Charlie should have been allowed to go straight away (and saved hundreds of thousands of pounds of scarce British taxpayer funds which have been used to provide months of intensive care) provided a reasonable physician would treat him in the US. Dr I appeared to be a reasonable and responsible physician.
This is not a religious or right to life argument, or an argument based on compassion. It’s a secular ethical argument about the extreme complexity of judging someone’s life to be not worth living, or judging the prospects of having a life worth living to be not worth taking. The courts have deferred to one group of doctors who are experts in the facts, but they are not experts in the ethics.
More than six months have passed since experimental therapy was first considered. We don’t know how bad Charlie’s brain damage is now. Whether experimental therapy is still warranted depends on whether there remains any prospect of any meaningful life, and how that should be balanced against further intensive care. Perhaps the moment has passed.
Professor Julian Savulescu
Uehiro Chair in Practical Ethics
University of Oxford
Visiting Professorial Fellow
Murdoch Childrens Research Institute
Ira W. DeCamp Professor of Bioethics
University Center for Human Values
Princeton University
&
Charlie Gard Bibliography
Article
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31204-7/abstract
Blogs
Debate: The Fiction of an Interest in Death? Justice for Charlie Gard
Agreement and disagreement about experimental treatment. The Charlie Gard Appeal
The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early
A lucid and uncompromising commentary that honors English bioethics. Its logic and clarity contrast with the statements of the authorities.
Thank you Mauel, that is very flattering.
Well, the case for reconsidering Charlie’s situation is even stronger now that seven of the world’s experts in nucleoside replacement therapy (not just Dr I) have presented new evidence and petitioned Great Ormond St to review the case. It will now return to the High Court. If Charlie has not sustained further irreversible brain damage such that his chances of achieving a life worth living are now zero (not just low), then he ought to be given his chance. It is very hard to argue that someone would be better off dead, especially when there is in an intervention that offers the chance of improving their life. The best interests argument in death is a hard, almost impossible, one to make, especially when no one has defined or even come close to describing the line between a life worth living and not worth living. An argument of unjust use of limited resources would have been more promising, but it wasn’t pursued and at any rate, the Gards negated any possibility of it by raising their own funds. Let’s hope Charlie is in good enough shape to go to the US for a 3 months trial of nucleoside replacement therapy. And let’s hope the High Court gets it right this time.
Grateful for your valuable reply. We will use your comments in a report our Observatory is doing. Regards
Your articles on Charlie Gard have been spot on and it’s admirable that you do stand up for your informed beliefs. I think many would appreciate your views on the full checks, tests and balances that the courts use in cases like this.
The parents emotional attachment to thier son was seen as a bias in courts thus weakened their argument and the financial gain of the US hospital /doctor was considered a bias that weakened the claim that the nucleoside therapy may work. I am absolutely astonished that the judges did not test for bias in Great Ormond Street Hospital’s position. There are so many questions in this case. Would have Charlie received the experimental drug if it was developed by Great Ormond Street Hospital? Personally I believe that he would have been given any drug as long as Great Ormond Street Hospital had been working on it. And I am convinced that even with a miniscule chance of survival or recovery, Great Ormond Street Hospital would have fought to give their drug to this child even in the case that the parents disagreed on the same grounds that this hospital currently uses in court.
Thank you Maria. Here is the 4th last paragraph of the judgement of the High Court:
“127 Dr. I, who has not had the opportunity of examining Charlie, and who operates in what has been referred to as a slightly different culture in the United States where anything would be tried, offers the tiniest chance of some remotely possible improvement based on a treatment which has been administered to patients with a different condition. I repeat that nucleoside therapy has not even been tried on a mouse model with RRM2B. As Dr. I candidly said,
“It is very difficult for me never having seen him, being across the Atlantic and seeing bits of information. I appreciate how unwell he is. His EEG is very severe. I think he is in the terminal stage of his illness. I can appreciate your position. I would just like to offer what we can. It is unlikely to work, but the alternative is that he will pass away.”
My reading of Dr I’s evidence was of an informed, measured, considerate and careful clinician who had Charlie Gard’s interests in mind. The reference here, and elsewhere in the judgement, of a culture of “trying anything” seemed irrelevant to Dr I’s evidence. I don’t know why it was brought up in the conclusion. Some doctors in the US might “try anything” but I saw no evidence in the judgement that Dr I was one of them. Maybe I am wrong but he hits the nail on the head when he says “it is unlikely to work, but the alternative is that he will pass away.”
Thank you for your response. There may be a reason why it is in the conclusions but nonetheless I agree that the US doctor gave a balanced opinion. My main concern remains that Great Ormond Street Hospital’s potential bias has not been tested nor considered and whilst this is the case it is difficult to believe that Great Ormond Street Hospital actions since November 2016 were indeed in Charlie Gard’s best interest or not.
You do touch on the financial aspect of the life or death decisions with the view that it did not matter as the parents raised the necessary funds for Charlie’s experimental therapy. I dare to disagree and I would go as far as arguing that it is very likely that the cost of the US treatment played a major role in Great Ormond Street Hospital’s decision process. Given the public donations to the hospital and considering the contents of Great Ormond Street Hospital’s fundraisers they would have been obligated to pay for Charlie’s US medical treatment had they continued to back it up past November 2016.
I have now read the judgement, and it is clear that the parents (Connie Yates and Chris Gard) were not well served by their lawyers. I know that moderators at Practical Ethics will be nervous about any criticism of lawyers in Britain, who will so readily sue for libel. This itself is part of the problem: there is a tendency to self-censorship in discussing this case, because people fear the wrath of the elite.
Connie Yates and Chris Gard were represented in court by Sophia Roper and Pravin Fernando, of Serjeants’ Inn Chambers. They were ‘instructed’ by the law firm Bindmans, under the dual system used in complex cases in England. Bindmans has a reputation as activistic human rights lawyers, and they can’t be dismissed as unconcerned. Nevertheless, it is very hard to avoid the impression, that the parents of Charlie Gard have been disadvantaged in the legal system, by the fact that they are working class, white working class. I have looked at the social media outrage among their right-wing supporters, and I have seen a lot of accusations, but not that one, not yet. I am not saying the parents are blameless, far from it. They are the ones who choose to mount a right-wing social media campaign, they are the ones who sought the support of Nigel Farage, and so on.
That said, the more I read about the case, the more it is evident that elite contempt for ordinary people plays a central role. That is visible in the tone of the expert contributions at this blog, which ignore the many political and social factors in the case, and treat it as a pure medical ethics issue. A recent opinion piece in The Guardian by Gaby Hinsliff is another example of the arrogance which the case brings out in the well-educated. (The Charlie Gard case is heartbreaking, but society can’t shun its experts).
My concern about the legal representation provided by Bindmans and Serjeants’ Inn Chambers is that the lawyers are too preoccupied with their professional status, their career, and social contacts with their peers, and that as a result they were blind to the political aspects of the case, especially the controversial right-wing positions on Charlie Gard. They omitted to introduce these issues in court. They are frightened that their career and personal social life will collapse, if they talk about death panels, EU death sentences, EU genocide against whites, leftist death culture, and so on. So they approached the case from a position of deference to the elite, in the this case the medical authorities, and failed to challenge the assumptions of that elite, especially the assumption that this is a medical ethics case. It is not: the Charlie Gard case is pure politics, at least it is by now.
The most obvious missing issue is class discrimination: the parents would have been treated more deferentially, if they had been upper-middle-class professionals. Religious discrimination is also an issue: if they had been Muslims, the doctors and the courts would have been far more deferential to their values, because Islam is a recognised value system and belief system. They could have, for instance, called Islamic scholars to testify that Islam rejects the treatment philosophy of the doctors. Because they are not Muslims (and apparently not religious), they were denied the chance to present this expert evidence. Also relevant is that they were not informed by the hospital about the hospital’s values, in advance of the admission of their child. They were effectively denied the chance to choose a no-kill hospital.
Although I am not a lawyer, I have no difficulty in finding such flaws in the whole medical and legal process. I simply compare it to a hypothetical value-pluralist process, appropriate to a polarised western society. Western elites are resolutely hostile to value pluralism, since it undermines national unity. Nevertheless, it would allow individuals to seek medical treatment for their children, in accordance with their own values. In a hypothetical post-national Britain, for instance, there would be separate no-kill hospitals, to which parents could take sick children, knowing they would never be ‘put to sleep’. Even though that is only a hypothetical possibility, it serves as a counter-factual to analyse the present system: the current British National Health Service (NHS) has no no-kill option, but does not inform patients of that fact. The courts ought to consider such implicit policies, when judging cases such as that of Charlie Gard, but they won’t if no-one ever mentions them.
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