LONDON – Archie Battersbee, a 12-year-old British boy whose livelihood was withdrawn after a legal battle between his parents and his doctors, died on Saturday, his mother said, ending another painful case over who makes life and death decisions for a seriously ill child.
Archie had been in a deep coma since his mother found him unconscious on April 7 at their home in Essex, in the south east of England, with something tied around his neck. His mother, Hollie Dance, has said he may have entered an online challenge.
In a series of decisions, the judges found that Archie had suffered severe brain damage and that the burdens of treating his condition “along with the total lack of prospects for recovery” outweighed the benefits of keeping him alive on a ventilator.
Archie’s family appealed the rulings, saying they wanted him to die at a time “chosen by God.” They argued that because of his Christian beliefs and thoughts expressed in the past, Archie’s intention would have been to continue on with sustenance.
Wednesday night, after unsuccessful appeals to three different courts in a week, the family requested that Archie be transferred to a hospice. Doctors at the Royal London Hospital declined due to the risks associated with moving him, saying they would most likely cause a “premature deterioration”, and the family’s legal efforts to overturn the decision were also rejected.
Ms. Dance had called the doctors’ decision to schedule a time when life support would be pulled a “choreographed execution of my son.” She asked why parents are “taken away from their decisions and their rights.”
In Britain, when parents and doctors disagree about what is in a child’s best interests, a court must make a decision. In recent years, similar high-profile cases have emerged, such as those of Charlie Gard and Alfie Evans. Pope Francis weighed in on both cases, and Donald J. Trump, when he was president, offered help from the United States for 11-month-old Charlie.
Experts said such painful dilemmas reflected a shift from when doctors made the final call, with the decisions seen as not only medical but also ethical. When parents disagree with doctors, almost impossible questions are asked, such as what kind of life is worth living and how serious a child’s condition must be before there is any chance of recovery.
In Archie’s case, doctors said they believed his brain stem was dead. However, due to the lack of response, doctors were unable to perform full brainstem tests, so he was not legally declared brain dead.
During hearings, judges sided with the medical evidence that supported the conclusion that Archie had no prospect of recovery. They ruled that the medical support “only serves to prolong his death, while he cannot prolong his life,” according to court documents.
Ms. Dance has said Archie’s condition was better than what the doctors described to the court. She said he was showing signs of improvement and added that he had even squeezed her hand.
Archie’s father, Paul Battersbee, has been less prominent in the legal battles, but he has supported efforts to continue life support.
Dominic Wilkinson, a professor of medical ethics at the University of Oxford, said the issue boiled down to a fundamental question.
“It’s about what drugs are for”” he said. “It is to make us better, to enable us to live and enjoy our lives. But sometimes all drugs can do is prolong the dying phase. And sometimes, frankly, medicine does more harm than good.”
But, he added, doctors and families sometimes disagreed on this issue.
“Families sometimes want to prolong life at all costs,” he said, “while health professionals recognize that medicine has reached its natural limits.”
Last week, after the UK Supreme Court refused to intervene to delay the withdrawal of life support, Ms. Dance submitted a request to the UN Committee on the Rights of Persons with Disabilities, a branch of the organization’s human rights group. The agency said it had asked the British government not to withdraw the treatment while the case was pending.
“All we’ve ever asked for is more time,” Ms Dance said in a statement at the time. “The urgency of the hospital and the courts is inexplicable.”
“I don’t believe there’s anything ‘dignified’ about planning Archie’s death,” she added. “Parents need support, not pressure.”
But on Monday, the court refused to extend a break until after noon on Tuesday, arguing that the Convention on the Rights of Persons with Disabilities, under which the United Nations Commission had made its request, issued an “unincorporated international treaty” and that the decision to withdraw life support could stand.
The family asked Tuesday to appeal to the Supreme Court, but that request was rejected. The next morning they filed a petition with the European Court of Human Rights, which refused to intervene.
On Saturday, not long after his ventilator was taken off at 10 a.m., Archie died.
“I wouldn’t want other parents to go through what we went through,” Ms Dance told Times Radio on Wednesday, adding that she plans to continue raising awareness about things like online challenges that children participate in, and “the story of Using Archie to hopefully save their lives.”
