Who decides what happens to Charlie Gard, and why?

Adrian Short · 10 July 2017

There are many myths and misconceptions about the Charlie Gard legal case.

At the heart of this is Charlie himself. He is 11 months old and gravely, terminally ill. He’s on ventilation, without which he’d die.

I’ve got no doubt that Charlie’s parents want the best for him and are doing what they think is best at an impossibly difficult time. Likewise, the healthcare professionals at Great Ormond Street Hospital, who have dedicated their lives to caring for sick (sometimes dying) children.

Being 11 months old, Charlie cannot give consent either for treatment (of any kind) to continue or to be withdrawn. So normally, as with every other similar situation, the parents give consent on behalf of their child to any treatment or discontinuation.

There is an entirely correct presumption (but no absolute right) that parents give consent according to what is right for their child. At the same time, doctors are bound by medical ethics and the law to provide appropriate treatment options in the patient’s interest.

It is commonplace, not unusual, for doctors to decide that there is no prospect of cure, recovery or improvement for a patient. Like all humans and human systems, sometimes doctors and hospitals get this judgement wrong. But they cannot avoid making these decisions.

Usually, doctors offer the parents of a sick child at least one option they consider to be acceptable. With Charlie that’s not the case. Charlie’s parents will not consent to the one option offered: withdraw life support and provide palliative care only until he dies.

Charlie’s doctors think that it would be wrong to prolong his life and suffering without a reasonable prospect of improvement. And they don’t think there is a reasonable prospect with the experimental therapy proposed. Charlie’s parents think it is justified to prolong his life in this condition even for a very small prospect of improvement.

There is no financial aspect to this. The legal issues would be the same even if Charlie was in private hospital with parents paying. Healthcare isn’t a consumer service. Patients can’t demand what doctors consider to be inappropriate treatment for themselves, nor can parents do that on behalf of their children. Try asking a private hospital for a leg amputation without medical cause and see what happens. They won’t care that you’re willing, nor that you’re prepared to pay for it. So the dispute between parents and doctors is over how large or small the prospects of improvements with the proposed experimental therapy are. And this factors into the “cost/benefit” calculation (in human terms not financial ones) as to which course is in Charlie’s best interests.

The court isn’t deciding whether Charlie’s parents’ or doctors’ wishes should necessarily prevail. Rather, the court is asking: If Charlie was able to give informed consent, what would he do?

There is no new principle of law here. It’s established that the patient’s best interests should prevail, regardless of anyone’s wishes. The court recognises that there is a general presumption to prolong life, but not in every case and at any human cost in terms of suffering. Prolonging life must be justified in the patient’s best interests, regardless of whether that delights or dismays anyone else, including the parents and the doctors.

And here we have a much overlooked but essential fact: The court has appointed a legal guardian to safeguard Charlie’s interests. Charlie’s guardian is represented by lawyers in court, along with those for the parents and hospital. Shamefully, Charlie’s parents’ lawyers are working for free as they can’t get Legal Aid. Without that they’d have no legal voice.

Regardless of what you think should be the outcome here, I hope everyone can see why it’s neither the parents’ nor doctors’ wishes in themselves that count. Not every parent is responsible or wise. Nor is every doctor. And to give either absolute rights over patients would lead to serious abuse.

Some people on either side of the argument have accused the parents or hospital of nefarious motives. I don’t agree with that. But if you suspect it, that’s all the more reason for an independent court to make the decision: What’s best for Charlie? Regardless of how you’d answer that question in this case, I know there are two definitely wrong answers: That parents should effectively legally own their children or that doctors should effectively legally own their patients.

Be thankful at least that the law puts first the best interests of patients of all ages who can’t consent for themselves. One day that could be you or I.

The only rights that count here are those of Charlie himself. Which is exactly how it should be.