“The time has come for your baby to die,” a doctor told the grieving parents of a catastrophically ill baby. No, this wasn’t the ongoing Charlie Gard case—so prominent in the news today—in which United Kingdom doctors and judges have told Charlie’s parents that their son’s life support will be removed, no matter what they want. (Charlie has a rare terminal mitochondrial disorder.) Rather, that blunt declaration was uttered in 1994 in Spokane, by a doctor to the parents of Ryan Nguyen, who—born at just twenty-three-weeks gestation—was on kidney dialysis and struggling for his life.
Then as now, doctors declared that further life-sustaining treatment of the child was “futile” and would only prolong his suffering. Then as now, desperate parents sought court relief against their son’s being pushed into the grave sooner rather than later. But then, unlike now, a court in Ryan’s case temporarily blocked the removal of treatment, pending trial.
The court never decided who had ultimate say over Ryan’s care, his parents or medical professionals, because his treatment was transferred to a different doctor who did not view his case as futile. Ryan was soon weaned off dialysis and survived for more than four years, a time in which he was a generally happy, if sickly, child who liked to give “high fives.” Had his original doctors successfully imposed their futile-care philosophy on their patient and his parents, Ryan would have died before he’d truly had a chance to live.
Before Baby Ryan’s ordeal, the parents of “Baby Terry”—also born after twenty-three weeks gestation—faced a similar ordeal. The ethics committee at the Hurley Medical Center in Flint, Michigan weighed in on August 9, 1993, opining that to honor the parents’ desire to continue Baby Terry’s treatment “would be contrary to medical judgment and to moral and ethical beliefs of physicians caring for the patient” (my emphasis). In other words, when it came to choosing between the values of the parents—based in large part on their religious faith—and the values of doctors and hospital bioethicists, the state argued that only the latter matters.
On that basis alone, a judge found Terry’s parents unfit to make health-care decisions for Terry and stripped them of their parental rights. He awarded temporary custody to the maternal great-aunt, who had previously stated her willingness to obey the doctors. Before that could happen, the infant died in his mother’s arms, aged two-and-a-half months.
In 2011, a similar struggle hit the headlines. Ten-month-old Joseph Maraachli was diagnosed with a terminal and progressively debilitating neurological disease. He was being cared for in a London, Ontario ICU when doctors told his parents, Moe Maraachli and Sana Nader, that they were going to withdraw all life-sustaining care.
Moe and Sana vehemently disagreed, and a bitter dispute erupted between them and the hospital’s doctors and administrators over continuing Joseph’s care. There were two areas of disagreement. First, there was the hospital’s stated intention to end all life-sustaining treatment. Second, when Moe and Sana asked doctors to perform a tracheotomy so that Joseph could be taken home, the doctors refused, claiming such a procedure was medically and ethically unwarranted.
Litigation ensued. The bitter impasse was broken when the American nonprofit organization Priests for Life paid to transfer Joseph to a hospital in St. Louis that was willing to perform the surgery. The operation was a success, and Joseph was brought home, where he died peacefully in his sleep five months later.
These, Charlie’s, and many other similar cases I could recite, involving profoundly ill people of all ages, are examples of what is known in the bioethics trade as “futile care” or “medical futility”—or, as I call it, futile-care theory. FCT authorizes doctors to refuse or withdraw wanted life-sustaining medical treatment over the objections of family and patients when the doctors and/or a bioethics committee believe that the patient’s quality of life makes that life not worth living—or, lurking in the subtext, not worth the resources required to sustain it.
A couple of important points need to be made: We are not talking about an intervention without a potential physiological benefit to the patient—a medical determination. Rather, FCT constitutes a value judgment. As bioethicist Dr. Stuart Youngner once put it, “futility determinations will inevitably involve value judgments about: 1) whether low probability chances are worth taking; and 2) whether certain lives are of a quality worth living.”
Worse, FCT empowers strangers to make medicine’s most important and intimate health-care decisions. Deciding whether to accept or reject life-sustaining care is one of the most difficult medical choices. Under FCT, a patient’s decision—whether it be the desire of an infant patient’s guardians or written in an adult patient’s advance directive—matters less than institutional and professional opinions.
Given all that, Charlie Gard’s heartbreaking situation is not surprising. However, until Charlie’s case, the patient or family has always had the option of finding alternative care. The hospital refusing Ryan’s dialysis did not seek to prevent his transfer. Neither did the hospital in the Baby Joseph controversy.
This is where Charlie Gard’s case is breaking new and even more authoritarian ground. Not only are doctors and judges forcing Charlie off life-support; they are also declaring that their ethics rule over Charlie’s life, even if the parents—Chris and Connie Gard—find alternative care. As far as I know, this is unprecedented in futile-care controversies.
Chris and Connie have raised more than $1 million through crowdfunding to pay for Charlie to be flown to the United States for an experimental treatment that has shown some potential in other mitochondrial conditions. If that course proves impossible, they just want to take their baby home so he can die there instead of in a pediatric ICU. But the hospital administration refuses to permit Charlie to be discharged! And the courts have agreed, based on a determination of what doctors and lawyers believe to be Charlie’s “best interests.”
The only silver lining in this tragedy is that a very sick baby’s life still has the power to move hearts. Not only have Chris and Connie received tremendous popular support internationally, but they are also being backed by two of the most visible leaders in the world: Pope Francis and Donald Trump.
The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing. And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies—and others facing futile-care impositions—ultimately owned by the hospital and the state?