LONDON — A 12-year-old boy, who had been in a coma for four months, died Saturday at a London hospital after doctors ended life-sustaining treatment his family was struggling to continue.
Archie Battersbee’s mother, Hollie Dance, said her son died at 12:15 a.m., about two hours after he started to leave treatment at the hospital. The English courts had rejected both the family’s effort to extend treatment and their request to send Archie to a nursing home, saying that no action was in the child’s best interest.
“I’m the proudest mom in the world,” Dance said as she stood in front of the hospital and cried. “He’s such a beautiful little boy and he fought to the end.”
The legal battle is the latest in a series of highly publicized British cases where parents and doctors disagree over who is more qualified to make decisions about a child’s medical care. This has sparked a debate about whether there is a more appropriate way to resolve such disputes away from the courts.
Archie was found unconscious at home on April 7. His family believes he may have entered an online contest that went wrong.
Doctors concluded that Archie’s brain stem died shortly after the accident, and they sought to end the long list of treatments that kept him alive, including artificial respiration, drugs to regulate bodily functions, and 24-hour nursing care. But his family objected, claiming that Archie was showing signs of life and wouldn’t want them to lose hope.
The dispute sparked weeks of legal debate as Archie’s parents tried to force the hospital to continue with life-sustaining treatments. Doctors at the Royal London Hospital argued that he had no chance of recovery and should be allowed to die.
After a series of courts decided that it was in Archie’s best interests to be allowed to die, the family asked permission to move him to a nursing home. The hospital said Archie’s condition was so unstable that moving him would hasten his death.
On Friday, Supreme Court Justice Lucy Theis denied the family’s request and ruled that Archie should stay in the hospital while treatment is withdrawn.
“Their unconditional love and devotion to Archie is the golden thread that runs through this case,” Theis said in her decision. “I hope Archie can now be given the opportunity to die peacefully with his family, which meant so much to him as well as to him.”
That decision was made on Saturday after both the UK Court of Appeals and the European Court of Human Rights refused to consider the case.
But Archie’s family said his death was nothing short of peaceful.
Ella Carter, Archie’s oldest brother, Tom’s fiancee, said Archie was stable for about two hours after the hospital stopped all medications. That changed when the ventilator was turned off, she said.
“It went completely blue,” he said. “There’s absolutely nothing honorable about watching a family member or a child drown. No family should go through what we went through. It’s barbaric.”
Carter laid her head on Dance’s shoulder and wept as the two women embraced.
The hospital offered its condolences and thanked the doctors and nurses who cared for Archie.
“They provided high-quality care with extraordinary compassion over several months, often in difficult and distressing conditions,” said Alistair Chesser, chief medical officer of the Barts Health NHS Trust, which manages 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 have been fought publicly, such as the 2017 legal battle against Charlie Gard, a baby with a rare genetic disorder, that put doctors’ decisions against the wishes of families. His parents fought unsuccessfully to get him experimental treatment before he died.
Under British law, it’s common for the courts to intervene when parents and doctors disagree over a child’s medical treatment. The child’s best interests precede the parents’ right to decide what they believe is best.
Ilora Finlay, professor of palliative medicine at Cardiff University and a member of the House of Lords, said this week she hopes the Conservative government will conduct an independent investigation into different ways of handling these cases. It’s no use to settle such disputes in a contentious court process, she said.
“Families don’t want to go to court. Doctors don’t want to go to court. Administrators don’t want to go to court,” Finlay told Times Radio. “My concern is that these cases go to court too quickly and too soon, and we need an alternative way of managing communication between doctors and parents.”
Finlay said the challenge for parents is that they are in shock and often want to deny that they have had a catastrophic brain injury.
“When they have a brain injury, usually their children look intact, so their faces always look the same,” he said. “So understanding what’s going on inside the brain and the amount of injury is something that needs to be delicately explained to parents, and it takes time.”
Archie’s family has been supported by Christian Concern, who has campaigned on end-of-life issues and the role of religion in society. The group said it was a “privilege” to stand with the family.
Andrea Williams, CEO of Christian Concern, said: “The events of the past few weeks raise many important issues, including questions about how death is defined, how these decisions are made, and where the family is.” Said.