Why People Are Debating Taking This Baby off Life Support

July 7th 2017

Kyle Jaeger

There are no simple solutions in the Charlie Gard case. The 11-month-old is suffering from a terminal illness from which he's expected to die soon, and while his parents hope to get their son into experimental treatment, medical experts and ethicists aren't so sure that'd be in Charlie's best interest.

charlie gard

Charlie has a rare genetic disorder known as mitochondrial depletion syndrome, which has damaged his brain and prevents him from breathing or moving on his own. Because the brain damage is irreversible and Charlie's condition will continue to deteriorate, the Great Ormond Street Hospital in London decided that ending his life support would be the most humane thing to do.

His parents disagree. For months, they've challenged the hospital's decision in British and European courts, fighting for the right to transfer their son to hospitals willing to administer experimental treatments and pushing Charlie's case into the international spotlight.

Though the hospital agreed to extend Charlie's life support in light of "fresh evidence" about an experimental treatment option on Friday, the debate over who should have the final say is ongoing.

charlie gard

Jonathan Moreno, a professor of medical ethics at the University of Pennsylvania, told ATTN: that while he sympathizes with the parents and understands their desire to pursue all options, the doctors advocating for Charlie's removal from life support are adhering to fundamental ethical principles.

"The preference for babies and small children [on life support] is of course to let their parents determine what the best interests of the child would be," Moreno said. "But it is generally thought that there's a point beyond which reasonable people would not disagree."

Besides accounting for potential suffering, Charlie's doctors are also obliged to consider whether he'd improve from experimental treatment and "what discomfort would be involved in the treatment itself." There must be "only a minor increase over a minimal risk to the child" from a medical ethics standpoint, Moreno said.

The consensus view in the medical ethics community is that Charlie's doctors are right to recommend he be taken off life support. That said, Raanan Gillon, a medical ethicist based in London, told The Associated Press that he dissents from that popular opinion.

"I think the main ethical consideration," he said, "is who should be making the decision about Charlie’s best interests and my own view—though I have to say that most people disagree with me so far as I can find in the ethics world—my own view is that it should be the parents who decide."

Moreno said "Gillon is emphasizing the process part of it" and that he'd respond by asking if there was "any point at which parents are barred from making decisions about their baby."

"There are decisions that could be considered by you and me as abusive and neglectful—some crazy intervention that would very definitely cause pain and suffering," he said. "Surely we wouldn't want the doctors to step aside and wash their hands. It can't be, in general, that parents can do anything they want with respect to their dying child."