Charlie Gard's short life pitched parents into turmoil and grief

For most of Charlie Gard’s short life, his anguished parents found themselves confronting a harsh and unfamiliar world of paediatric intensive care, the law courts and the media.

Trust between Connie Yates and Chris Gard and the health professionals treating their son appeared to have broken down, apparently irretrievably. The path led them to the adversarial conflict of the courtroom.

Disputes between parents and doctors over the treatment of a child are always emotionally fraught. Judge Francis, who oversaw Charlie’s tragic case, was clear in his hope that lessons could be learned. For Charlie’s parents, in their state of turmoil and grief, there should have been an alternative, he suggested.

“It is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other’s positions,” the judge said.

Total breakdowns of trust are rare. Cases that do reach the courts generate many headlines, notably the story of Ashya King, the five-year-old boy with a medulloblastoma whose parents sparked an international hunt when they went on the run with him to Spain after disagreeing with hospital doctors over his treatment.

Bad communication was usually at the heart of such disputes, said Sarah Barclay, the director of the Medical Mediation Foundation which has worked on similar cases and trains health professionals in how to avoid trust break down by using a “conflict pathway”.

Research by the MMF found triggers for conflict included inappropriate use of language and excessive medical jargon. “Parents will say, ‘I don’t feel they are listening to me’. Doctors also say, quite often, ‘I don’t feel they are listening to me’. So there is a communication block,” said Barclay.

“If it is not recognised and addressed early, the risk is that communication begins to feel very strained and tense. Then both sides can start avoiding having conversations. And actually, they are conversations that need to happen.”

When communication breaks down, positions become entrenched, said Barclay, adding: “You have, almost, the battle lines being drawn. The more conflict escalates, the more dehumanising it can become. And the more you get drawn into one of these really complicated conflicts, the more it feels like a battle and the more it becomes like a battle, however hard you try not to make it one.”

MMF’s research, based on extensive conversations with parents with direct experience, showed that “as that conflict tended to escalate, the child somehow got lost in the middle,” according to Barclay. “The focus of everybody was, somehow, on the winning of this battle, even if no one had intended it to become a battle.”

Although everybody wanted the best for the child, “the impact of these conflicts is that, somehow, it can become harder for everybody to keep the child at the centre of it”.

Nurses, junior doctors and consultants had all said their training had often not equipped them with the skills needed to have these difficult conversations, Barclay said, though “they all have training in how to break bad news, how to talk to bereaved families”.

Time constraint was often cited as an impediment to good communication, along with the lack of funding for communication skills training in the NHS, said Barclay. But getting people together in a room, away from the adversarial atmosphere of a courtroom, might be all that was needed for each side to better understand the other.

She said there was anecdotal evidence that therehad been an increase in the number of conflicts between parents and medics, partly due to high-profile cases and also due to the internet, which presented a challenge to professionals and raised difficult questions about how to handle expectations from experimental treatments.

Dominic Wilkinson, the professor of medical ethics at the University of Oxford and a consultant in newborn intensive care, said the internet was a “great power”. It gave families and doctors information about treatment options they might not know about that were being used elsewhere.

“For families, it is a way of redressing the imbalance in power, in knowledge,” he said. “Doctors have their authority, their training. It can be hard for families to know whether to believe or to trust. It can be hard for them to disagree. The internet give them access to information, sometimes correct information.”

With that, though, are the negatives, which, in the context of seriously ill children with rare conditions, included people offering treatments that are not relevant, for a variety of motives, with no scientific evidence to support them.

“Professionals had to be open minded, be willing to listen, explore and engage with families hopes and wishes, and then be able to empathically communicate that it isn’t a realistic option. That is the core challenge,” Wilkinson said.

Despite efforts to make courts accessible and less intimidating, he says they “are not easy or comfortable places to go”, were costly, financially and emotionally, and drawn out with “multiple layers of appeal”.

He said: “There are a number of things we can and should do. We need to look at ways to help doctors in communicating with families, learn to listen, be open to the families’ concerns, priorities and views about what treatment would be best for their child.

“We need to have ways to support difficult decisions. Clinical ethics committees in the UK are extremely under-resourced within the NHS. We need to explore and fund mediation to resolve disputes. The judge said all cases should have mediation first. That is an important step.”

General Medical Council guidelines state that doctors must consider the views of the parents when weighing up the benefits, burden and risk of treatment.

The GMC has said that doctors should always try to work in partnership with parents to provide the information and support that they need to make decisions, working towards a shared view about the best course of action.

Where there was significant disagreement, that could not be resolved through local processes, then an independent review by the courts played an invaluable role in providing reassurance that all relevant factors and options were considered before a decision with major consequences for the child and their parents was made, it said.