The parents of little Briton Charlie Gard continue to fight against his hospital and the United Kingdom’s health service to have their son approved to travel to the United States to try experimental treatments for his congenital condition. U.S. hospitals have volunteered to provide him care, some even free of charge, and the family has raised millions of pounds to fund experimental treatment.
In the wake of his case, the question of who gets to determine the welfare of a child only grows in importance. The Charlie Gard case is only one of several high-profile cases of parental decision-making being overruled in the name of “medical futility,” “quality of life,” or “death with dignity” considerations—some of which have occurred in our own country.
A year ago, I wrote a piece for the Public Discourse about a pro-life, pro-parent bill originating in the Kansas Senate. Christened “Simon’s Law,” the bill primarily sought to combat the troubling trend of medical providers secretly placing Do Not Resuscitate (DNR) orders in the medical charts of very sick children, unbeknownst to their parents. Now, a year after its introduction, “Simon’s Law” has finally passed, making Kansas the first state to sign this important legislation into law. If the Charlie Gard case shows us anything, it’s that more states need their own Simon’s Law.
‘Medical Futility’ is Often Invoked Improperly
Like little Charlie Gard, Simon Crosier—for whom the eponymous Kansas law is named—suffered from a serious congenital illness, and required life-sustaining medical treatment. Doctors were quick to label Simon’s condition as “incompatible with life,” and unbeknownst to his parents, placed a DNR order in his medical chart. The Crosiers watched on in horror as one day, three-month-old Simon’s oxygen saturation levels dropped and doctors stood by, doing nothing to intervene.
In the wake of his death, the Crosiers were finally able to view their son’s medical chart, and were shocked to find the unauthorized DNR. They were also greatly troubled to find that only “comfort feeds” had been authorized by Simon’s medical providers, despite their hopes that he would eventually be eligible for corrective heart surgery if he grew large enough. Simon died three days before his scheduled surgical consultation.
Increasingly, the word “futile” is used erroneously in medical discourse to describe the treatment of very sick children like Simon and Charlie. To be considered truly futile, a procedure or intervention must have no chance of achieving the outcome or effect for which it was designed or intended. Therefore, while some may consider it useless to, say, provide a tracheotomy for a terminally-ill infant with breathing trouble, it is not truly futile if it eases the patient’s breathing, and allows for the reasonable goals of caring for the patient—in the famous case of Baby Joseph, to be cared for (and eventually die) at home—to be achieved.
Providers and parents may reasonably disagree over the value of such an intervention (whether the burdens outweigh the benefits), but invoking the language of futility in such a case is simply incorrect. Nevertheless, providers continue to erroneously use this inherently technical term to improperly justify what are actually value-laden judgments.
Objective ‘Quality of Life’ Does Not Exist
Certainly, “quality of life” judgments lead to as many intractable conflicts as does the rampant misuse of the word “futile.” As healthcare is a limited resource, quality of life discussions surrounding terminally ill or disabled patients may take on a coldly utilitarian air, especially in environments—like the UK’s National Health Service—where public funds are at stake.
As Wesley J. Smith puts in First Things, while the judgment that a patient’s life is “not worth the resources required to sustain it” may never be voiced aloud, it is often “lurking in the subtext” of a quality-of-life based refusal of costly life-sustaining treatment. One wonders whether London’s Great Ormond Street Hospital’s refusal to allow Charlie’s transfer to “the Pope’s Hospital” was done less out of concern for Charlie’s ability to “die with dignity” (which, troublingly, is also the favored phrasing of the pro-euthanasia contingent), and more out of an attempt to dampen accusations that cost-containment motivates their decision to withdraw Charlie’s costly life-sustaining treatments.
Regardless, the idea that an unrelated third party should be given the authority to decide what “quality of life” or “dignity” means for another individual—both inherently subjective judgments—should rightly rankle anyone concerned with both protecting patients’ rights (and by extension, the rights of their surrogate decision-makers), and with combating the overreach of medical paternalism.
Why Every State Needs Simon’s Law
Because minors are often incapable of making their own complex medical decisions (“incompetent” in medical discourse), surrogate decision-makers are required. In the case of very young children, the standard employed is called the “best interests standard,” and it is generally accepted that parents should be the surrogates authorized to employ it in medical decision-making for their children. In some circumstances, parents may not be competent decision-makers for their children, but in a free, democratic society that recognizes the primacy of parental authority over their child’s wellbeing, such parents would be the exception that proves the rule.
It is precisely because value judgments regarding burdens and benefits of specific interventions can vary so drastically between providers and patients (or their medical decision-makers), and because motivations and intentions vary amongst these stakeholders, that the authority of those individuals who naturally have their children’s best interest at heart (i.e., their parents)—should be given the highest deference in medical decision-making for those children. As I wrote for the Public Discourse, “it is the parents who suffer the biggest impact of their child’s disease, and the ones who will be hurt the most by their child’s death. In this way, parents are perhaps the greatest stakeholders in scenarios involving very young, very sick children.”
As both a new parent and pro-life advocate, I have followed the Charlie Gard with abject horror. “What would I do?” I’ve often wondered over the past few weeks, as the drama of Charlie’s tragic life has unfolded on the international stage. Given the choice, I know now that I would rather live in a state with Simon’s Law than one without; I believe it is an important piece of legislation which justly recognizes parental authority, and which seeks to enshrine it more securely during an era in which the values of life and family have been cheapened and defaced.
Therefore, I urge parents across the nation to join in petitioning their respective state legislatures to implement their own Simon’s Laws—and other pro-life, pro-parent legislation as soon as possible—before the stories of Charlie Gard and Simon Crosier become those of our own children.