When Parents and the State Disagree Over a Child’s Medical Treatment

It almost sounds like the plot of a dystopian novel: a British couple was arrested in Spain and thrown in jail after they took their 5-year-old boy, who has a brain tumor, out of a British state hospital to seek alternative treatment abroad. The wrenching case has unleashed an international debate over parental rights, medical ethics and who should have the final word when it comes to the fate of an extremely ill child.

The boy, Ashya King, was diagnosed with a brain tumor in July. After a surgery to remove the tumor at Southampton General Hospital, in southern England, doctors recommended that Ashya undergo chemotherapy and radiotherapy. (The hospital told TIME that with such treatment, Ashya’s survival rate was between 70% and 80%.) But Brett and Naghmeh King weren’t comfortable with the idea of chemotherapy and began asking the doctors about proton-beam therapy, which is believed to target tumors more precisely than radiotherapy and is thought to be less physically devastating than chemo. According to Brett King, Ashya’s doctor told him that the treatment “would have no benefit whatsoever.” Yet the Kings, who had researched proton-beam therapy and had contacted a clinic in the Czech Republic that offered the treatment, felt differently. So, on Aug. 28, the couple took their son from the hospital and traveled to Spain, in order to sell their property to raise funds to pay for Ashya’s treatment privately.

Unbeknownst to them, the British hospital then contacted the authorities and notified them that Ashya’s life was in danger without proper medical supervision and the Kings were nowhere to be found. (Brett King later said he had told doctors he planned to take his son abroad.) Britain’s Crown Prosecution Services (CPS) issued a European arrest warrant for the couple on suspicion of neglect and cruelty to a child. It wasn’t long before the Kings were found and arrested by Spanish police, while little Ashya was placed alone in a hospital near Málaga, without his family to comfort him.

The ordeal made headlines across the U.K., where a lot of emphasis was placed on the family’s beliefs (they’re Jehovah’s Witnesses), and more than 130,000 people signed an online petition calling for the boy to be reunited with his parents. It was three days before the couple was released and CPS dropped their arrest warrant. The hospital has also suggested that they would now support the family’s decision to seek proton-beam therapy for Ashya.

On Monday Sept. 8, the family was able to transfer the boy to Prague’s Motol hospital where doctors will assess his condition before a potential move to a proton-therapy center. But the family’s ordeal has set raised a spate of questions. How did this happen? How did this couple — who are, by most accounts, loving, devoted parents that only want the best for their desperately ill child — end up being pursued by the authorities in not one, but two countries and thrown in jail? Why did a small boy find himself alone in a foreign hospital without his parents or siblings to comfort him? It’s a murky, complicated case and, for many reasons, it’s not clear just where the blame lies.

Despite the international police search and the arrest of the worried, loving parents of a sick child, British authorities have now admitted that Ashya wasn’t facing much danger. Though the CPS’s spokesman insisted in a statement that at the time the arrest warrant was issued authorities were convinced that there was a “serious risk of threat to [Ashya’s] life,” he also noted that investigators had later found that:

As for University Hospital Southampton Trust (UHS), which runs Southampton General Hospital, they stand behind the decision to alert authorities about Ashya, saying in a statement that it was “in line with Trust policy.” Michael Marsh, the medical director at UHS, also said in a statement on Sept. 1, “We very much regret that the communication and relationship with the King family had broken down in this way and that for whatever reason they have lost confidence in us.”

It’s clear that there was definitely a breakdown in trust and communication between the Kings and the doctors. What’s less clear is how that breakdown occurred. For his part, Brett King has said, in a series of YouTube videos posted online, his son’s doctor didn’t appear to be willing to discuss alternative treatments. “He said, more or less, that if I questioned him in anyway regarding his treatment they would get an emergency protection order and take [Ashya] away from me.”

Peter Haughton, a senior adviser in medical ethics and law at King’s College London, tells TIME that in most medical cases, “the law and the ethics are very clear. Both the parents and the doctors have a duty of care [to act in the child’s best interests] and the law backs that.”

But in this case, when the parents and the doctors weren’t seeing eye to eye about what was best for the boy, things spun out of control. Though Haughton maintains that the hospital was in line with “their duty of care” in alerting the police, he adds that it’s typically only when it “can be demonstrated that [the parents] aren’t acting in the best interest of the child that society steps in. One thinks of that [in terms of] neglect and those sorts of things, but this wasn’t neglect. This was actually the parents desperately trying to find the best treatment which they thought they were being denied.”

“Normally these things get resolved with a conversation, you find a common perspective,” he says.

Many have suggested that both the police and the hospital overreacted and stepped out of line. (Court disputes over the medical treatment of minors are rare in the U.K., let alone a full-flung police investigation.) Several high-profile figures have also spoken out in support of the Kings, with Prime Minister David Cameron going so far as to publicly state via a spokesman that he believed they were trying to “do the very best for” their son.

Others have suggested that prejudice might have played a part in the incident. Suzanne Moore, a columnist for the Guardian, wrote on Sept. 1 that the Kings “have been effectively criminalised for their distress. And possibly their faith.”

That’s a view shared by British author Ian McEwan, whose most recent novel, The Children Act, is about judge who has to decide whether to force a child to have a blood transfusion against the wishes of his parents, who happen to be Jehovah’s Witnesses. McEwan weighs in on the case in an interview with TIME, calling it an “almighty screwup” and adding, “I’ve got a strong suspicion that when the hospital and the police overreacted, it was influenced by the fact that the parents were Jehovah’s Witnesses.”

Though there was no indication that the Kings’ faith played any role in their decisions, the clash between doctors’ wishes and the beliefs of Jehovah’s Witnesses, who are generally not allowed to accept blood transfusions, has made headlines in the U.K. in the past. For their part, Southampton General Hospital denies that the King’s beliefs factored into their decision to alert the police.

Despite the arrest warrant being dropped, Ashya still remains a ward of the British court system and any subsequent decisions about his treatment must be approved by authorities. On Monday, Sept. 8, there will be a hearing in the U.K., where a judge will have the final say in Ashya’s course of treatment, if the Kings and the medical authorities are still in dispute. It seems likely that the Kings will be able to try proton-beam therapy in the end. But no matter the outcome, it’s hard not to feel that the intervention of the hospital and the state — all in the name of Ashya’s best interests — have worked against him and his parents all along.

— With reporting by Belinda Luscombe