Wesley J. Smith writes about the difficult and heart-breaking Charlie Gard case and the potential ramifications of the UK court’s decisions. The precedent being set in this case (and similar cases discussed by Smith, including ones in the USA) is chilling regardless of whether you think you’d make the same decisions as Charlie Gard’s parents. Read the entire article at First Things.
… 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…
… 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?
The UK medical center fought in court to disallow the parents to take Charlie elsewhere for care when at one point he was offered care in the USA, and Congress offered them citizenship to do so, AND they raised $1.5 million for his care. The UK medical establishment and courts wouldn’t even let the parents take Charlie home to die in the peace of his home if death were going to be the only option allowed to him. In these difficult cases, it can be very hard to know what is the right thing to do. BUT having the medical center and court overrule the family’s (or individual’s) choices and force someone to die? And die in the hospital too? It is sickening. And terrifying.