Monday, July 17, 2017

Whose Baby is Charlie Gard, Anyway?

Futile-Care Theory (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.


“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.

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