Discussion: The Sad Case of Charlie Gard and the Rights *and Wrongs* of Experimental Treatment

In a blog post, 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”.


Discussion: The Sad Case of Charlie Gard and the Rights *and Wrongs* of Experimental Treatment
OTJONLINE reproduces this blog post for the purposes of discussion, its contents may not reflect the opinions of the owners of this website.

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By Dominic Wilkinson @Neonatalethics

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.

Why the different conclusions? Here are two core areas of disagreement

  1. When doctors opposed the family’s request for treatment in January they could not have predicted that 6 months and 4 court judgments later treatment would still be continuing. Why? While there has been intense media attention to this particular case, most cases like this never reach the public. It is, sadly, not uncommon, for children to be diagnosed with severe illness that medicine cannot cure or aid. Every day, in intensive care units up and down the country, medical teams and families reach decisions together that life-sustaining treatment is no longer helping a child and decide to withdraw treatment. In the majority of cases, the family and health professionals reach agreement about treatment. Where there is disagreement, that is usually able to be resolved with patience, careful communication, sometimes with second opinions or ethics committee review. It is only rarely that cases need to go to court. Where such cases have gone to court in the UK (as in this case) the judges have, on the whole, agreed with a professional determination that treatment is not in the child’s interests. It is deeply distressing, for Charlie, for his family, and for the professionals involved, that this disagreement has continued for so long. However, that was not inevitable.
  2. Experimental treatment for Charlie Gard is associated with significant side effects such that it is highly likely not to be in his interests to provide it. Some have noted that the requested treatment – nucleoside therapy, is taken orally, without significant side effects. However, that ignores the very substantial harms of life support itself – and the requirement to continue intensive care for months to see if the treatment were doing anything at all. Back in April I noted that “Being kept alive in intensive care is not pleasant. Although we do our best to provide pain relief, sedation, care and comfort to gravely ill children and babies, that ability is finite and imperfect. Children on long-term ventilation often appear uncomfortable at least part of the time. They have frequent needles and invasive procedures.” In Charlie’s case, there is the additional complication that he is paralysed and unable to indicate (except indirectly through changes in his heart beat or blood pressure) if or when he is in pain.

Here, there are different views about the balance of risks and benefits. Which is right? How should we decide? If there is reasonable disagreement about what would be in Charlie’s best interests, I accept (and have argued as much) that we should defer to parents’ views. But it isn’t clear to me that this is a question of reasonable disagreement (or dissensus). Lurking behind some of the recent public statements on this case are two unreasonable arguments

i. Parents should be the ultimate decision-makers about medical treatment for their child.

This is the US legal approach, and seems to be the basis of much US commentary on the Charlie Gard case. However, it is ethically misguided. It either assumes that parents are infallible and always make the best decisions for their child. Or it assumes that children are the property of their parents, who may make whatever decisions they like about them. But both of those are mistaken. We do not think that parents can make just any decision for their children. Even with the best intentions, parents can make foolish or unwise decisions. Where parents’ decisions run a significant risk of causing substantial harm the state has a duty to the child to intervene.

ii. It is never acceptable to withdraw or withhold medical treatment from a patient if continuing treatment could keep them alive.

This is the right-to-life view. It assumes that life is always a benefit. It ignores the substantial burdens of life-sustaining treatment and of illness. However, this view is not the official view of any of the world’s major religions, nor is it shared by most people when contemplating treatment for themselves.

All medical treatment has risks and benefits. Often it will be helpful, but sometimes it will do more harm than good.

When we are thinking about a child, it is absolutely clear that sometimes providing life-support, or continuing life support is not in the child’s best interests.

How might we decide whether experimental treatment is a reasonable option for a particular child? One important step is to seek the views of professionals with relevant expertise – those who know the medical details of a specific case and understand the science and evidence behind the proposed treatment. Second, or third or further opinions may be useful. Then an impartial arbiter (someone with no vested interest and no agenda) should listen carefully to the views of the experts as well as the parents, and make a determination about whether this treatment should be provided, or whether, actually, it has no realistic prospect of helping while risking serious harm for the child.

But that, of course, is exactly what has happened in the Charlie Gard case. Justice Francis in the Family division of the High court listened carefully and compassionately to the request of the family and weighed carefully the expert evidence. He reached the view then that this treatment was not in Charlie’s interests, and his judgment was then upheld in the Appeals court, the Supreme Court, and in the European Court of Human Rights.

We should be guided by parents’ views about medical treatment for their child. But not in every case, and not in this case. We should generally be willing to allow dying patients access to experimental treatment. But not in every case. Not in this case.


Source: Practical Ethics



Discussion: The Sad Case of Charlie Gard and the Rights *and Wrongs* of Experimental Treatment

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