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When Parents and Doctors Disagree on What Futile Means

4 minute read
Alice Park is a senior health correspondent at TIME. She covers the COVID-19 pandemic, new drug developments in cancer and Alzheimer's disease, mental health, HIV, CRISPR, and advances in gene therapy, among other issues in health and science. She also covers the Olympics, and co-chaired TIME's inaugural TIME 100 Health Summit in 2019. Her work has won awards from the New York Press Club, and recognition from the Deadline Club. In addition, she is the author of The Stem Cell Hope: How Stem Cell Medicine Can Change Our Lives.

He’s only 11 months old, but Charlie Gard commands an army of the impassioned that numbers in the hundreds of thousands and includes a Pope and a President. This online platoon, including 350,000 people who have signed a petition on his behalf, is rallying behind his parents’ singular mission — for Charlie to stay alive. A far smaller but equally committed group, including a hospital and a court, is fighting back, defending the medical community’s right to decide when enough treatment is enough and to allow the baby to die with dignity and in peace. It’s a moral argument with a challenging perception problem, as doctors are aligning to essentially stop the care they are committed to provide. And no matter what happens to Charlie, the questions raised by his case will endure.

Charlie was born last August with a rare mitochondrial depletion syndrome that renders his cells unable to pull energy from his body. The disorder has left parts of his brain so damaged that he can’t breathe on his own or hear. For the majority of his short life, he has lived in the neonatal intensive-care unit at Great Ormond Street Hospital in London, relying on machines to breathe for him. He can’t move his arms and legs and suffers from seizures that require medications to control. This spring, the hospital determined that nothing more could be done to help him and that his life of tubes and monitors doesn’t have the quality a human deserves. Removing him from life support would be, in its opinion, the most humane option for him.

His parents Connie Yates and Chris Gard disagree. While they recognize their son’s medically precarious state, they have staked their hope on an experimental therapy that has never before been tested on humans with Charlie’s condition. If there is a chance that Charlie could get better, even if he doesn’t recover completely, then they should have the right to take it, they say. “He’s our son. We feel it should be our right to decide to give him a chance at life,” Yates said to British broadcasters. “We don’t know until we try. He’s still fighting, and we’re still fighting.” So why would a hospital take a moral stand against treatment and against parents’ wishes?

Doctors aren’t obligated to provide treatment that they feel is inhumane or ineffective. Before recommending that Charlie be taken off of life support, his doctors considered the experimental therapy but concluded that his brain had been so damaged that he wasn’t likely to improve if he received it. “Doctors in this case could have said, He’s going to suffer, it’s going to be really unpleasant and painful for him, but what the hell, it’s not our problem,” says Jonathan Moreno, a professor of medical ethics at the University of Pennsylvania, about acceding to the parents’ wishes. “Would we want our doctors to think that way and wash their hands of that obligation? I don’t think so.”

Parents apply a very different emotional calculus to the notion of futility, says Dr. Margaret Moon, a pediatrician from the Johns Hopkins Berman Institute of Bioethics. For some, there is no such thing as futile medical care, given that their only priority is keeping their child alive. That’s the position the parents of Baby K took when they insisted on continued life support for their daughter, who was born with only a partial brain and had trouble breathing on her own. For others, like Charlie’s parents, the threshold of futility is reached only when they have exhausted every possible treatment option, however uncertain the outcome.

In the U.S., such conflicts are generally resolved in favor of the parents. When doctors don’t feel medically and ethically able to continue futile treatment for a child, they offer parents the opportunity to find other hospitals that would. “In the U.S. we have created a culture where everybody should get whatever health care they want,” says David Magnus, director of the Center for Biomedical Ethics at Stanford University. “As long as neither neglect nor abuse is involved, we give parents tremendous latitude in making decisions for their children.”

That’s not the case in the U.K., in large part because of the country’s single-payer national health system. It’s more routine for the medical community, and the courts, to make decisions about what’s acceptable care, what’s excessive care and even, as in Charlie’s case, when care should stop.

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