The heartbreaking story of an 11-month-old baby boy, Charlie Gard, has dominated newspaper headlines in the UK, and more widely. In th last few weeks, Charlie’s parents, Connie Yates and Chris Gard, ended their legal fight to transfer their son to the USA for experimental treatment. After further court hearings to decide where Charlie should die, he was transferred to a children’s hospice. On July 28, Charlie died.

Reflections on why decisions about Charlie’s care ended up being made in court are important. Fundamentally, it was because no agreement could be reached between his parents and his clinical team. Charlie had a rare form of encephalomyopathic mitochondrial DNA depletion syndrome and was a patient in Great Ormond Street Hospital (GOSH).

There is no proven treatment for his disorder.

For most of his short life, Charlie was ventilated in the intensive care unit and in December, he began to have severe seizures. The GOSH team concluded that his brain damage was severe, and that his life support should be switched off. But Charlie’s parents disagreed, saying that he did not have irreversible brain damage and that he was able to respond to their touch.

With no agreement between his parents and his clinicians, GOSH applied to the High Court, and, on April 11, Mr Justice Francis ruled that it was in Charlie’s best interests to stop life support. Charlie’s parents then lost their appeal against the judgment, and pursued their fight in the Supreme Court, then in the European Court of Human Rights, to no avail.

In July, Pope Francis and President Trump offered support to Charlie’s parents. The doctor who had offered to give nucleoside treatment to Charlie in New York reviewed the case details and retracted his offer.

Meanwhile, staff at GOSH, their families, and Charlie’s parents all received abuse and threats.

At the heart of this sad story is a breakdown of trust and communication between Charlie’s parents and the clinical team at GOSH, but also fundamental disagreement over the extent of Charlie’s brain damage, and about who has the right to make decisions about his care. Since February, GOSH‘s position has been that every day that passed was a day that was not in Charlie’s best interests.

For Charlie’s parents, however, hope (perhaps given in vain) and love sustained their fight for their son. They believe that had their son received the experimental treatment sooner, he would have had a chance.

Overseas, the Gard case has been portrayed as a fight between parental rights and the State, yet that is to fundamentally misunderstand the legal argument. In the UK, parent’s don’t have rights, so much as they have responsibilities. The rights of the child must always come first and foremost. GOSH, the UK courts and the European Courts had all decided it was in the child’s best interest to allow him to die.

When the limits of medicine are reached, communicating those limits to parents falls to paediatricians or intensivists, and is undeniably difficult to do. Clinical decisions are rarely black or white, and communicating the shades of grey can be extraordinarily difficult, especially when a baby is involved. Finding the right time and place, allowing time to reflect, ask questions, and revisit the conversation are all essential, and it is a hard skill to learn. The level of pain and suffering, and whether any treatment can prolong life, has to be taken into account.

Faith-based considerations might be important to discuss, especially if either parent holds a strong religious point of view. Usually, agreement can be reached, and it is rare that lack of consensus ends with a court application.

Mediation between all parties might be valuable to consider as a step before coming to court, and the Judge in Charlie’s case suggested it should be compulsory, although at times it too may fail. The overriding principle in UK law is to consider what is in the best interests of the baby; this is not the case in all countries.

When no treatment for a disease exists, Dominic Wilkinson and Julian Savulescu in a Comment in this issue propose an ethical framework for deciding on access to experimental treatment. However, clinicians should avoid giving false hope. “The child first and always”, GOSH’s slogan, has to be at the heart of clinical decision making.

Amid the grief and sadness, there is, however, a value, indeed a need, to stand back and think about what we can learn. Consider a slightly different case:

A boy had suffered a catastrophic injury while being operated on: his neck had been broken. Though alert and talkative, he was paralysed. His parents had told his doctors that they wanted care to be withdrawn (he was on a ventilator) so that he could die peacefully. He wasn’t terminally ill, but they thought it best given what the future would hold.

Assume no precedent. What would your advice be? It seems clear that as a minimum, the parents’ views should not be the last word; the lawyers should go to court, ensure that the child was separately represented by a lawyer, and that the only question for the court was what was in the child’s best interests. The advice was followed in a NZ case. The child was made a ward of court, was cared for and lived on.

I’m sure that those who have involved themselves in the case of Charlie Gardwould applaud what happened in Auckland. But if they do, they would also have to acknowledge a number of things that have been part of our approach to the care of children since the 19th century. The first is the most fundamental: as a society, we must choose how to decide such heartbreaking cases. Of course each child is different, but do we accept that there should be principles and rules, whatever the circumstances, that guide us as we try to work out what’s best?

We can, of course, reject such a view and choose to go with the heart and emotions. But if we do, whose heart should prevail when there are conflicting views? Where there is conflict, how do you resolve it? Alternatively, we can reason our way through, cold as this may appear. We can accept the idea of principles and rules. And, if reason is to prevail, you need to analyse how to proceed.

These are the steps. The first is to recognise that children do not belong to their parents. Second, when a claim is made that parents have rights over their children, it is important to step back and examine the language used. We need to remind ourselves that parents do not have rights regarding their children, they only have duties, the principle duty being to act in their children’s best interests. This has been part of the fabric of UK law and society for a long time. Third, if we are concerned with the language of rights, it is, of course, children who have rights; any rights that parents have exist only to protect their children’s rights.

Now, in giving effect to a child’s rights, the parents’ views as to their children’s interests should usually be respected. But parents cannot always be the ultimate arbiters of their children’s interests. If parents, for example, insist on subjecting their child to a particular diet that, in the view of others with acknowledged expertise in the subject, will cause the child harm, we do not stand by. We intervene to safeguard the child.

When such concerns arise, there has to be a mechanism to decide the circumstances in which parents’ views should not prevail. That mechanism has to be a trustworthy and independent source of authority, sometimes a local authority, but ultimately, as ever in a civic society, a court. The court’s sole concern must be, can only be, for the child and the child’s interests. Evidence and views, particularly those of the parents, must be listened to. The court must then decide and, crucially, make its decision and reasoning public, exposing it to scrutiny and holding it to account. The court is not infallible. That’s why we allow for appeals; a kind of second thought. But, ultimately, we are not in the realm of there being a right answer. We are in the realm of judgment, reasoned judgment, and we look to the courts to provide this.

This process depends of course on acceptance of the supremacy of reasoned argument over passion and the acceptance of the independence and authority of the courts. Campaigns against the courts, whether led by tabloid newspapers, organised through social media or exploited by sectional and religious groups, are increasingly a feature of modern discourse. It is one thing to comment on or criticise a particular decision. It is a very different thing to attack the institution of the courts.

Here, in Charlie Gard’s case, the call has been to keep the courts out; they don’t understand. Only the parents should decide: let passion prevail. Those behind such calls should reflect on what they wish for in case they get it. A whole system designed to address dispassionately the rights and interests of children would be pushed aside. And perhaps they should think of that little boy in NZ.