The ethical legacy of the Charlie Gard case

Earlier today, the parents of terminally ill baby Charlie Gard ended their legal challenge for him to be taken to the US for experimental treatment.

His mother, Connie Yates, said that “to let our beautiful little Charlie go” is “the hardest thing we’ll ever have to do”.

Professor Julian Savulescu is director of the Oxford Uehiro Centre for Practical Ethics. He explores about the ethical lessons we can take from this tragic tale:

"At some point in all of our lives, we have to let go. One can only admire Connie Yates and Chris Gard who fought so hard for Charlie.

However, we should continue to question the original decision, and the way in which these decisions are made. Even if it is too late for Charlie now, we should improve how we make these decisions for the future.

Back in January, there was an option for a trial of treatment that had some chance of success, a world leading doctor willing and able to provide it, and, by April, the funds had been raised to achieve it without public funds.

There were also the means to control and minimise Charlie's suffering. I believe that a limited trial of treatment was in Charlie’s interests back then, given the only alternative for him was death.

Doctors opposed this because of the low chance of success combined with fears that the extra time in life support would be too painful.

Four months of the legal process has left us with no trial of treatment, and no chance now for Charlie. Yet Charlie had to go through all the suffering (and more) of being kept alive on life support.

No-one wanted this outcome. No-one believes this outcome was in Charlie’s best interests. There has got to be a better process. It has been traumatic for all the doctors, who have genuinely had Charlie's interests at heart, and Connie and Chris, but most of all Charlie.

It has also raised other issues.

Charlie would have been the first to receive this treatment and some have said it risked Charlie being used as a guinea pig. Medicine won't progress without experiment and innovation.

Over the years processes have been developed to protect patients and ensure the best scientific results. Double blind placebo controlled trials are the gold standard. I have argued that, for rare and deadly diseases with no existing therapies, it is in the patient's interests to access potential treatments earlier and without placebo, provided they have a reasonable scientific basis.

There is little to lose and much to gain for this group of patients, and the protections that are in place can cause more harm than good for them.

A second issue is that social media has given power to the people. Over the five court hearings, Trump and the Pope, and thousands of others have weighed in. We have had to have these discussions about how and who should decide on what makes life worth living and what kinds of chances are worth taking.

The question of who should decide is legitimate. Some people have wrongly concluded that these decisions should only be up to parents, but at the same time it is right that doctors, scientific experts and the Courts should not be considered almighty, beyond question or account.

How much should the decision–making be left to parents? While most parents want to do the best for their children, parents can abuse their children, or can be radically mistaken. We do need oversight to ensure children are protected.

If Connie Yates and Chris Gard had requested ongoing intensive care for a herbal treatment with zero scientific evidence or rationale, that would be abuse. But they weren't. They were asking for a treatment with a clear scientific rationale and some relevant evidence, with the support of a relevantly qualified medical expert.

There have to be protections. But doctors should not activate these legal mechanisms, or stop parents travelling for medical care for their child, unless there is disagreement between the parents, or they are going to an unsafe place, or they are very confident the parents' choice is unreasonable.

That requires doctors to think ethically, as well as having all the scientific evidence. The problem is not who has the power, it is how it is used and the need for robust, and humble, ethical deliberation.

Some have seen this as a further attack on ‘experts’, a current hot topic. But this case was more about disputed values than disputed facts. What has been absent, and is absent from society, is a sound secular ethical approach to these life and death issues.

I haven't seen any substantial ethical discussion of the deep ethical issues in this case like what makes a life worth living or what kinds of chance are worth taking.

Debate has been shut down in monosyllabic ethical argument: treatment is futile or it is not futile. And we have again closed our eyes to the elephant in the room: resources and justice. The NHS may not be able to afford such experimental treatments for everyone who needs them.

We should have had a debate about resources and justice. These are difficult questions but ones that must be addressed openly. It goes beyond accepting the expertise of someone else.

This has been a clash of medicine, science, politics, ethics and religion. Yes, there is always a clash of values because many people hold different values and weigh facts differently. What matters is that people's values are reasonable and they don't seek to impose them on others, or other families.

It would have been very reasonable for Charlie's parents to choose to withdraw treatment; it was also very reasonable to choose a small chance of some improvement. I wouldn't choose experimental treatment if I were Charlie's parents but that does not mean they are wrong or unreasonable to do so.

We need a bit of humility about our moral views about the good life, and about how and when to live. In Charlie's case, his parents have been accused of prioritising their own interests over Charlie's in choosing to take their child for experimental treatment that might give him a chance to live.

The courts have intervened and stopped them. However it is a reasonable view of Charlie’s interests that his parents held. I hope that there will be a review of the basis of these decisions, and how they are decided in the light of this case."