Afor four months died Saturday in a London hospital after doctors stopped life-sustaining treatment that his family had struggled to continue.
Archie Battersbee’s mother, Hollie Dance, said her son died at 12:15 p.m., about two hours after the hospital began withdrawing treatment. British courts rejected both the family’s effort to extend treatment and a request to move Archie to hospice, saying neither move was in the boy’s best interest.
“I am the proudest mom in the world,” Dance said as she stood outside the hospital crying. “Such a beautiful boy and he fought to the end.”
The legal battle is the latest in a series of highly public British cases in which parents and doctors have argued over who is best qualified to make decisions about a child’s health care. That has sparked a debate about whether there is a better way to resolve such disagreements outside of court.
Archie was found unconscious in his home with a ligature to his head on April 7. His parents believe he may have been participating in an online challenge gone wrong.
Doctors concluded that Archie had a dead brain stem shortly after the accident and sought to end the long list of treatments that kept him alive, including artificial respiration, drugs to regulate his bodily functions and 24-hour nursing care. But his family objected, claiming that Archie had shown signs of life and would not have wanted them to lose hope.
The disagreement sparked weeks of legal arguments as Archie’s parents tried to force the hospital to continue life-sustaining treatments. Doctors at the Royal London Hospital argued that there was no chance of recovery and that he should be allowed to die.
After a series of courts ruled that it was in Archie’s best interest to be allowed to die, the family sought permission to transfer him to hospice. The hospital said Archie’s condition was so unstable that moving him would hasten his death.
On Friday, Superior Court Judge Lucy Theis denied the family’s request, ruling that Archie should remain in hospital while treatment was withdrawn.
“Her unconditional love and dedication to Archie is a golden thread running through this case,” Theis wrote in her decision. “I hope that now Archie can have the opportunity to die in peaceful circumstances, with the family that meant as much to him as he clearly does to them.”
That ruling came on Saturday after both the UK Court of Appeal and the European Court of Human Rights declined to take up the case.
But Archie’s family said his death was anything but peaceful.
Ella Carter, the fiancee of Archie’s older brother Tom, said Archie was stable for about two hours after the hospital stopped all medications. That changed when the fan was turned off, she said.
“It turned completely blue,” he said. “There is absolutely nothing dignified about seeing a family member or child suffocate. No family should have to go through what we’ve been through. It’s barbaric.”
Carter put her head on Dance’s shoulder and sobbed as the two women hugged each other.
The hospital expressed its condolences and thanked the doctors and nurses who cared for Archie.
“They provided high-quality care with extraordinary compassion for several months in often difficult and distressing circumstances,” said Alistair Chesser, chief medical officer of 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 across the country.”
Legal experts insist that cases like Archie’s are rare. But some disputes pitting doctors against the wishes of families have been played out in public view, such as the 2017 legal battle over Charlie Gard, a baby with a rare genetic disorder. The parents unsuccessfully fought for him to have an experimental treatment before they died.
Under British law, it is common for the courts to intervene when parents and doctors disagree about a child’s medical treatment. The best interests of the child take precedence over the parents’ right 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 that she hopes the Conservative government will carry out an independent investigation into different ways of handling such cases. Deciding such disputes through an adversarial court process helps no one, she said.
“Parents don’t want to go to court. Doctors don’t want to go to court. 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 an alternative way to manage communication between doctors and parents.”
The difficulty for parents is that they are in shock and often want to deny that there has been a catastrophic brain injury, Finlay said.
“When there is a brain injury, often your child looks intact, so their face looks like it always has,” he said. “So understanding what has happened inside the brain and the number of lesions is something that needs to be delicately explained to parents, and that takes time.”
Archie’s family received support from Christian Concern, which campaigns on end-of-life issues and the role of religion in society. The group said it was a “privilege” to be around family.
“The events of the last few weeks raise many important issues, including questions about how death is defined, how those decisions are made and the place of the family,” said Christian Concern executive director Andrea Williams.