AFor four months, he died Saturday in a London hospital after doctors ended the life-prolonging treatment his family had fought to continue.
Archie Battersbee’s mother, Hollie Dance, said her son died at 12:15 p.m., about two hours after the hospital began ceasing treatment. British courts had rejected both the family’s attempt to expand treatment and a request to move Archie to a hospice, saying neither move was in the best interests of the child.
“I’m the proudest mom in the world,” Dance said as she stood outside the hospital crying. “Such a beautiful little boy and he fought to the end.”
The legal battle is the latest in a series of highly public UK cases in which parents and doctors have been sparring over who is better qualified to make decisions about a child’s medical care. That has sparked a debate about whether there is a more appropriate way to resolve such disagreements outside the courts.
Archie was found unconscious at home on April 7 with a ligature over his head. His parents think he may have entered an online challenge that went wrong.
Doctors concluded that Archie was brainstem dead shortly after the accident and sought to end the long list of treatments that kept him alive, including artificial respiration, medication to regulate his bodily functions and 24-hour nursing. But his family objected, claiming Archie had shown signs of life and wouldn’t have wanted them to give up hope.
The disagreement led to weeks of legal battles as Archie’s parents tried to force the hospital to continue life-prolonging treatments. Doctors at the Royal London Hospital claimed there was no chance of recovery and he would have to die.
After a series of courts ruled it was in Archie’s best interest 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, Supreme Court Justice Lucy Theis rejected the family’s request and ordered Archie to remain in the hospital while treatment was halted.
“Their unconditional love and devotion to Archie is a golden thread that runs through this case,” Theis wrote in her conclusion. “I hope Archie now has the chance to die in peaceful circumstances, with the family who meant as much to him as he clearly does to them.”
That ruling was carried out on Saturday after both the British Court of Appeal and the European Court of Human Rights refused to hear the case.
But Archie’s family said his death was anything but peaceful.
Ella Carter, fiancé to Archie’s oldest 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 all blue,” she said. “There is absolutely nothing dignified about watching a relative or child suffocate. No family should ever 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 had cared for Archie.
“They provided high quality care with extraordinary compassion for several months in often difficult and painful 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 its caretakers, but also touched the hearts of many across the country.”
Legal experts insist that cases like Archie’s are rare. But some disputes that pit doctors’ judgment against families’ wishes have been fought out in the public eye, such as the 2017 legal battle over Charlie Gard, a baby with a rare genetic condition. The parents fought in vain to get him to undergo experimental treatment before he died.
Under UK law, it is common for 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 she hopes the Conservative government will launch an independent inquiry into different ways of dealing with these cases. Resolving such disputes through adversarial process doesn’t help anyone, she said.
“The parents don’t want to go to court. The 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 coming to court too soon and too early and that we need an alternative way to manage communication between the doctors and the 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’s a brain injury, their child often looks intact, so their face looks like it always does,” she said. “So understanding what happened in the brain and the amount of injury is something that needs to be sensitively explained to parents, and that takes time.”
Archie’s family has been supported by the 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 next to the family.
“The events of the past 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 Andrea Williams, Chief Executive of Christian Concern.