LONDON >> A 12-year-old boy who had been in a coma for four months died in a London hospital on Saturday after doctors ended life-saving treatment his family had been fighting for.
Archie Battersbee’s mother, Hollie Dance, said her son died at 12.15pm, about two hours after the hospital began halting treatment. British courts had rejected both the family’s efforts to extend treatment and a request to transfer Archie to a hospice, saying neither move was in the child’s best interests.
“I’m the proudest mom in the world,” Dance said as she stood outside the hospital and cried. “Such a beautiful little boy and he fought until the very end.”
The legal battle is the latest in a series of very public British cases in which parents and doctors have argued over who is best qualified to make decisions about a child’s medical care. This has sparked a debate about whether there is a more appropriate way to settle such disputes outside of the courts.
Archie was found unconscious at home with a ligature on his head on April 7. His parents think he may have participated in an online challenge gone wrong.
Doctors concluded that Archie had died of the brainstem shortly after the accident and sought to end the long list of treatments that were keeping him alive, including artificial respiration, drugs to regulate his bodily functions and 24-hour nursing care. But his family objected, saying Archie had shown signs of life and wouldn’t have wanted them to give up hope.
The disagreement sparked weeks of legal arguments as Archie’s parents sought to force the hospital to continue with life-saving treatments. Doctors at the Royal London Hospital argued there was no chance of recovery and he should be allowed to die.
After a series of courts ruled it was in Archie’s best interests that he be allowed to die, the family sought permission to move him to a hospice. The hospital said Archie’s condition was so unstable that moving him would hasten his death.
On Friday, High Court Judge Lucy Theis dismissed the family’s request, ruling that Archie should remain in hospital while treatment is stopped.
“Their unconditional love and devotion to Archie is a golden thread that runs through this case,” Theis wrote in her decision. “I hope now that Archie will have the opportunity to die in peaceful circumstances, with the family that meant so much to him that he clearly does for them.”
The ruling was handed down on Saturday after the UK Court of Appeal and the European Court of Human Rights declined to take up the case.
But Archie’s family say his death was anything but peaceful.
Ella Carter, fiancée of Archie’s older brother Tom, said Archie was stable for about two hours after the hospital stopped all medication. That changed when the fan was turned off, she said.
“He turned completely blue,” she said. “There is absolutely nothing dignified about watching a family member or child suffocate. No family should have to go through what we went through. It’s barbaric.
Carter rested her head on Dance’s shoulder and sobbed as the two women hugged.
The hospital expressed its condolences and thanked the doctors and nurses who cared for Archie.
“They provided high quality care with extraordinary compassion for many months in often trying and distressing circumstances,” said Alistair Chesser, chief medical officer at Barts Health NHS Trust, which runs the hospital. “This tragic case not only affected the family and their caregivers, but touched the hearts of many people across the country.”
Legal experts insist that cases like Archie’s are rare. But some disputes pitting the judgment of doctors against the will of families have been fought out in the public eye, such as the 2017 court battle over Charlie Gard, an infant with a rare genetic condition. The parents fought unsuccessfully for him to receive experimental treatment before his death.
Under UK law, it is common for the courts to intervene when parents and doctors disagree over a child’s medical treatment. The best interests of the child take precedence over the right of parents to decide what they think is best.
Ilora Finlay, a professor of palliative medicine at Cardiff University and a member of the House of Lords, said this week she hoped the Conservative government would carry out an independent inquiry into the different ways of dealing with these cases. Deciding such disputes through an adversarial court process does not help anyone, she said.
“Parents don’t want to go to court. Doctors don’t want to go to court. The managers don’t want to go to court,” Finlay told Times Radio. “My concern is that these cases are going to court too quickly and too soon, and that we need another way to manage communication between doctors and parents.”
The difficulty for parents is that they are in shock and often want to deny there has been a catastrophic brain injury, Finlay said.
“When there’s a brain injury, often their child looks intact so their face is as it was before,” she said. “So understanding what happened inside the brain and the amount of injury is something that needs to be sensitively explained to parents, and that takes time.”
Archie’s family have been supported by Christian Concern, which campaigns on end-of-life issues and the role of religion in society. The group said it was a “privilege” to stand alongside the family.
“The events of the past few weeks raise many important questions, including questions about the definition of death, how these decisions are made and the place of family,” said Andrea Williams, chief executive of Christian Concern.