Saving Preemies: Why Healthcare-Heroism Can Be Hell
One of the week’s stable of “government healthcare systems are evil” headline hits on the Drudge Report was this heartbreaker about a mother named Sarah Capewell pleading for UK doctors to save her 21 week-old preemie.
The doctors, playing right to Drudge’s surface-level script of heartless, conscience-free bureaucrats, refused, allowing the two-hour old infant to die. The horrified mother is now suing for a change in the country’s medical guidelines, demanding that all premature infants be afforded emergency care, at the very least on maternal request.
But as always, look a little deeper, ruminate a little more, and the story becomes one of those deep ethical dilemmas that’s not at all well-served or represented by a passing partisan summary.
What we have here is a clash between idealistic heroism and the statistical reality of what a given set of “standard” policies will result in. Capewell and her allies, like MP Tony Wright, point to rare cases like that of Amillia Taylor, a preemie that survived after being born at only 21 weeks herself (the doctors in that case misjudged her gestational age, and made efforts they otherwise would not have).
But therein lies the dilemma: they’re pointing to a miracle to define what should be regular practice. It is always possible, as Capewell alleges, that medical science has misjudged this: that technology has improved since the last time anyone checked and a higher percentage of preemies could survive if every last intervention was attempted in every case. That the Taylor case represents not a fluke, but a hidden possibility for improvement. Maybe, but at this point, decidedly unlikely.
Instead, as even the Daily Mail article notes, almost all infants born prior to 23 weeks (the recommended cutoff in the UK) will not survive no matter what is done: heroic intervention in such cases results in prolonged and painful infections, organ failures, and so on: a very brief life, artificially extended (if even that) only so that the infant can suffer a little longer. Even the later-term preemies who do have a chance face the likelihood of severe physical and mental disabilities along with a similarly grim long-term prognosis.
And yet still: some do occasionally defy the routine. Some, for whatever happy set of circumstances, might even make it mostly whole and healthy. There’s always a chance, no matter how slim, that we could be wrong about this one case. Or that some ingenious medical discovery or advance will, in the nick of time, suddenly swoop in and make things better. We can’t know if we don’t try, right? And that’s compelling enough for some. Can’t we make a policy that reflects hope? Affirms life?
But focusing on extremely rare cases and ignoring what that might mean for the conventional ones is deeply problematic as a guide to what’s right. Doctors, who see hundreds of cases in a year, and entire medical systems, who treat hundreds of thousands, have a very different perspective. They can put actual faces to the overwhelmingly larger number of preemies and families that don’t, won’t, and can’t make it: faces that loom just as big as any cherry-picked healthcare headline. They know that clinical-sounding words like “futile care” represent unbelievable amounts of suffering. That sometimes pouring on every last drug or piece of medical technology doesn’t “affirm life” at all: it tortures and mangles it, distills it down to a mere quantity of heartbeats, regardless of the physical or emotional cost to purchase each additional one. And doctors know that there is an often brutal trade-off between making efforts to briefly prolong life at all costs and providing peace and comfort through the inevitable (painkillers like morphine, for instance, can provide comfort but often at the cost of weakening respiration and shortened survival).
Those are the costs of making it standard practice to hold out for miracles. And there’s just no way anyone should be glib about them. Capewell and every other mother has every right and reason to pray for special intervention in their own case. But we just can’t have the occasional miracles without all the cases in which we’ll expend incredible amounts of time, effort, money, and, most of all, suffering… only to end up with a worse outcome. As far as I can tell, that’s exactly what Capewell and her allies are ultimately calling for: the inevitable price of an expanded policy of unrealistic heroism. Thousands and thousands more mangled, abused preemies, doomed nevertheless to die, oftentimes without measures that could lessen the pain. All in the hope that one or two might survive a little longer.
I’m still not sure it’s an easy ethical call. But take a long, deep breath before calling anyone a monster for coming down on either side of it.
Addendum: Shouldn’t mothers, regardless of anything else, have the final say, even to the point of demanding what is likely futile care? Yes and no. They certainly have the final say, outside of the realm of criminal child abuse, over what is done to their children. And it would be hard to deny anyone their emotional need to never give up.
But just because they can demand doesn’t mean that other people are required to provide. Neither doctors nor medical systems are legally or ethically obligated to provide care that they believe to be futile, especially when doing so violates their own consciences. This is, again, just one of those sticky questions where someone has to make a hard call about what the standard of care is going to be.
Update: Reality Rounds makes the same case I have, but with far more immediate authority: they know, in graphic detail, what even post-viability preemies often have to endure. Don’t look away.
I have cared for many infants at the edge of viability. It is always emotionally draining. There is no justice to it. The extreme measures involved to keep a 22-23 week infant alive is staggering, and it is ugly. I once had a patient who had an IV placed on the side of her knee due to such poor IV access. When that IV infiltrated, I gently pulled the catheter out, and her entire skin and musculature surrounding the knee came with it, leaving the patella bone exposed. I have seen micro-preemies lose their entire ear due to scalp vein IV’s. I have watched 500 gram infants suffer from pulmonary hemorrhages, literally drowning in their own blood. I have seen their tiny bellies become severely distended and turn black before my very eyes, as their intestines necrose and die off. I have seen their fontanelles bulge and their vital signs plummet as the ventricles surrounding their brains fill with blood. I have seen their skin fall off. I have seen them become overwhelmingly septic as we pump them with high powered antibiotics that threatened to shut down their kidneys, while fighting the infection. I have seen many more extremely premature infants die painful deaths in the NICU, then live.