NRL News

Surprise admission that “futility” is a “value judgment framed as a medical judgment”

by | Aug 18, 2017

By Dave Andrusko

trisomy-13-babiesEditor’s note. My family and I will be on vacation through August 25. I will occasionally add new items but for the most part we will repost “the best of the best” — the stories our readers have told us they especially liked over the last ten months.

Perhaps I am overstating the significance but I don’t think so. Let me explain.

Thaddeus Pope is Director, Health Law Institute, Mitchell Hamline School of Law, in St. Paul, Minnesota, and author of the hugely influential “Medical Futility Blog.” He is a major player in the field of bioethics and a fervent believer in (as the title of the blog suggests) medical futility, as elastic (and deadly) a term as you could imagine.

Wesley J. Smith, a frequently sparring partner with Pope, explains how this works its way out in practice:

Futile Care Theory claims that doctors and hospital bioethics committees should be empowered to refuse wanted life-sustaining treatment based on their beliefs that the patient’s life is not worth living or too expensive to maintain (or both).

Bluntly put, you would (or at least I would) rarely expect Professor Pope to come down on the right side of anything. But you–and I–would be wrong.

Regular readers of NRL News Today may recall a piece I posted earlier this month under the headline, “New study finds outcomes for babies born with trisomy 13 and trisomy 18 ‘not as lethal as docs once said.’”

Pope picks up on the editorial in the Journal of the American Medical Association [“Trisomy 13 and 18–Treatment Decisions in a Stable Gray Zone”] which commented on the findings of the study. Pope’s one-sentence introduction is absolutely accurate:

John Lantos shows that what was long framed a “futile” is really just a value judgment framed as a medical judgment.

Yes, yes, yes, and yes.

Pope then quotes the opening two paragraphs:

“Thirty years ago, pediatric residents were taught that trisomy 13 and 18 were lethal congenital anomalies. Parents were told that these conditions were incompatible with life. There was a tacit consensus that life-sustaining treatment was not medically indicated. Clinical experience usually was consistent with this self-fulfilling prophecy.”

“But with social media, this changed. Parents share stories and videos, showing their happy 4 and 5 year old children with these conditions. Survival, it turns out, is not as rare as once thought.” While median survival is just 12 days, 13% of children with trisomy 12 survive to 10 years. And they “smile and laugh.”

Pope’s response?

I am on the same page with Lantos and even with my frequent adversary Alex Schadenberg on this one. [Alex is the International Chair of the Euthanasia Prevention Coalition.]

One more time– “Just a value judgment framed as a medical judgment.” That holds true not just for babies with Trisomy 13 and 18 but also for so many vulnerable populations, a pool of potential “discards” that grows by the week.

Pope no doubt would find this a gross over-simplification. I don’t. You either subscribe to the sliding scale “quality of life” ethos or to the equality of life ethos in which every life has inherent, intrinsic, and inviolable value.


If you subscribe to the latter, nobody is ‘better off dead’ and no one has to meet the standards established by the Bioethics Establishment. You reject their formulas and to-do lists that consciously create a hierarchy of human life in which you are in, if you possess certain qualities, and you culled from the herd, if you don’t.

Pope doubtless will continue to disagree on most everything else but long-term, it is crucial that (in least in the cases of Trisomy 13 and 18) he understands that too often we mask prejudice as a “medical judgment.”

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