Battle for baby sparks an ethical debate watched around the world
Instead, it revolves around an ethical debate about what’s best for the child.
Under British law, it is normal for courts to intervene when parents and doctors disagree on the treatment of a child — such as cases where a parent’s religious beliefs prohibit blood transfusions. The rights of the child take primacy, rather than the rights of parents to make the call. It is a principle that applies even in cases where parents have an alterna- tive point of view, according to Britain’s Court of Appeal.
And Britain’s courts have been consistent in this case. Three courts agreed that the experimental treatment would be futile and may “well cause pain, suffering and distress to Charlie”. The parents then took their case to the European Court of Human Rights, which refused to intervene and endorsed the British judges’ decision.
“This was a decision about what is best for this child,” said Claire Fenton-Glynn, an academic at the University of Cambridge who studies children’s rights. “This is an incredibly difficult decision for the court, and it’s not one that the doctors or the court have taken lightly,” she said. “It’s this terrible, terrible situation. It’s a horrible thing to have to decide.”
In the US, such disputes are normally negotiated between parents and doctors, according to Arthur Caplan, head of the division of bioethics at New York University Langone Medical Centre in New York City. A family’s ability to afford endless care usually poses a bigger obstacle than ethical disagreements.
Even the Vatican had difficulty with Charlie’s case, as was clear in the conflicting messages that at first came from the Holy See. The Pope’s top bioethics official initially suggested that while the parents’ wishes should be respected, they must also be helped to accept the limits of medicine.
After an outcry from conservatives, Pope Francis issued a statement of his own, insisting on the need to respect the wishes of the parents to “accompany and treat” their son to the very end.
Caplan said Charlie’s situation is a reminder that medicine and technology can’t fix everything, even in wealthy countries with cutting-edge technology.
“It is a strong belief in the US and UK that medicine has one more trick up its sleeve,” Caplan said. “It’s like an article of faith. But it’s almost never true at the end of life.”