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Abstract
Neonatal intensive care units represent simultaneously one of the great success stories of modern medicine, and one of its most controversial developments. One particularly controversial issue is the resuscitation of extremely preterm infants. Physicians in the United States generally accept that they are required to resuscitate infants born as early as 25 weeks and that it is permissible to resuscitate as early as 22 weeks. In this article, I question the moral pressure to resuscitate by criticizing the idea that resuscitation in this context “saves” a human life. Our radical medical advancements have allowed us to intervene in the life of a human before it makes sense to say that such an intervention “saves” someone; rather, what the physician does in resuscitating and treating an extremely preterm infant is to take over creating it. This matters, I argue, because “rescues” are much more morally urgent than “creations.”
Notes
1. This article was born out of many discussions with Renee Boss; I am grateful for her thoughtful feedback on early versions of this project, and for her many patient discussions with me concerning NICU medicine. My thanks also to Yoram Unguru, who provided feedback on an early draft, and to Miriam Shapiro, who spent many lunch hours helping me to work through the ideas in this article (and, importantly, how to communicate those ideas to clinicians). Finally, my appreciation to the Hecht–Levi Postdoctoral Fellowship Program, which supported my research during AY 2014–2015.
2. Although there is some variation, this general framework of moral latitude is fairly widely endorsed. Prominent examples of this sort of guideline are provided by the Neonatal Resuscitation Program (NRP), the American Academy of Pediatrics (AAP), and the Nuffield Council on Bioethics, and the language of moral obligation and permission is used explicitly by Lantos and Meadows (Citation2006). I do, however, note in the following discussion on prognostication that this focus on simple gestational age has been criticized (Tyson et al. Citation2008).
3. Although the distinction between saving and creating has been raised in this context by Janvier and Mercurio (Citation2013), their more particular suggestion is that physicians may actually be more reluctant to resuscitate extremely preterm infants, as doing so makes them feel responsible for “creating a disabled child.” In offering this analysis, Janvier and Mercurio claim that such a psychological sense of responsibility would be merely an explanation of behavior, and would not justify actually treating preterm infants differently from other children. Although I do not deal in this article with the particular concern that what NICU physicians are responsible for is creating “disability” or “disabled children,” it's possible that the Janvier/Mercurio observation reveals a deeper ambivalence by physicians concerning whether they ought to intervene in a life in order to create rather than save. If this were right, then the saving/creating distinction noted by Janvier and Mercurio may have been pointing to the one that I discuss here, so my efforts could be seen as attempting to establish precisely the justification that Janvier and Mercurio said was missing.
4. The language of resuscitation may not be obvious to those who have not spent time in a NICU. The issue here is that 23-week infants do not have sufficiently developed lungs to breathe on their own, so will die upon delivery if not given life-sustaining therapies.
5. This case study is not a description of any one actual patient, but of a type of patient. Many thanks to Renee Boss for authoring the case.
6. The presence of suffering is unambiguous in the case of Baby Boy N, due to his survival for months. It is worth noting, however, that an additional complication concerns when an infant is able to perceive pain. This is a much-contested topic, and there is not agreement as to whether a 23-week infant experiences pain or not. There is no disagreement, however, as to whether a child who lives as long as Baby Boy N experiences pain for much of that time.
7. In a study of more than 4400 infants born between 22 and 25 weeks gestational age, increased birth weight (per 100-g increment), the use of antenatal corticosteroid therapy, female sex, and singleton birth were each associated with a benefit similar to increasing gestational age by approximately 1 week (Tyson et al. Citation2008, 1679).
8. Recent predictions relying only on gestational age suggest that babies born at 23 weeks survive approximately 23.6% of the time, and survive without moderate or severe impairment 11.3% of the time (Rysavy et al. Citation2015). Physicians also sometimes consult a neonatal survival calculator, like the one at the NICHD Neonatal Research Network. Plugging in Baby Boy N's data (including all of the relevant factors identified by Tyson and colleagues) yields the result that similar infants survive 18% of the time, and that 9% of the time, they survive without profound neurodevelopmental impairment (4% without moderate to severe impairment). The calculator can be found online at https://www.nichd.nih.gov/about/org/der/branches/ppb/programs/epbo/Pages/epbo_case.aspx (accessed December 20, 2016).
9. Much of what follows is a discussion of the “procreative asymmetry,” which Wilkinson discusses briefly, but with a focus on an asymmetry between harms and benefits for newborns. See especially Wilkinson (Citation2011a, 23–24). He discusses the issue further while investigating child “replacement” (allowing a child to die so as to have a different, healthier child) (Wilkinson Citation2011b).
10. Indeed, practitioners are instructed to think in terms of this equivalency, by the American Academy of Pediatrics (Citation2011) and the Nuffield Council on Bioethics (Citation2006).
11. In practice, we may even err on the side of overweighting possible benefits, or taking them to justify more than we would for adults (or ourselves). As NICU and PICU (pediatric ICU) physicians have told me in conversation, parents often instruct physicians to “do everything,” even if there is a very small chance that a given intervention will be successful, and despite the suffering that prolonged life entails. This suggestion is rejected by Janvier, Bauer, and Lantos (Citation2007) and Janvier, Leblanc, and Barrington (Citation2008), who argue that neonates are systematically disvalued in our judgments about rescue cases. However, the data referenced to support this claim comes from studies in which participants are asked to make judgments in a hypothetical case about resuscitating preemies, newborns, and adults, rather than observing real judgments in the NICU, so it is unclear whether we should take such data to be reliable indicators of what parents would do for their children. My thanks to Miriam Shapiro for discussion on this point.
12. In 2011, Frieda Mangold was born at 21 weeks and 5 days and survived to leave her German hospital to go home with her parents. Frieda is widely taken to be the youngest surviving preemie. Her story was reported in the United States by Time Magazine at http://healthland.time.com/2011/05/27/baby-born-at-21-weeks-survives-how-young-is-too-young-to-save (accessed December 20, 2016).
13. For those wanting a more theoretical exploration, see careful, creative defenses of asymmetric intuitions by Elizabeth Harman (2004) and Melinda Roberts (Citation2011a; Citation2011b). Perhaps the most thorough criticism of theoretical defenses of The Asymmetry is McMahan's (Citation2009). Arguments related in interesting ways can be found in Parfit's classic discussion of the Nonidentity Problem (Citation1984), David Benatar's famous argument against procreating at all (Citation2006), and Seanna Shiffrin's discussion of “wrongful life” accusations (Citation1999).
14. For a thorough (if technical) articulation of the gradualist view, see Warren Quinn's seminal (Citation1984).
15. Sentience here meaning the ability to perceive pleasure and pain. Thus, a sentience view of moral status would typically be held by a hedonic utilitarian.
16. Most prominently, a conception view is held by Thomistic, or Natural Law, thinkers, and therefore also by many Catholics.
17. I should note, however, that Wilkinson's argument (2011a) suggests that even full-term newborns require special moral reasoning, and that asymmetric reasoning may be part of the explanation for this. While it's beyond the scope of this article, it is worth investigating further whether full-term newborns really generate only rescue reasons, or whether they, too, may still be in the process of being created, and so also fall “in the middle” of the normative spectrum. My thanks to Dominic Wilkinson for raising this point.
18. One of the real moral puzzles concerning preterm resuscitation is its relation to viability, which is often (as it is in the United States, by virtue of the ruling in Roe v. Wade) tied to the legal permissibility of abortion. The Nuffield Council on Bioethics suggests that the “margin of viability” for a preterm infant should be tied to our best estimate of when a child's chance of survival falls below 50%, with at least some survivors experiencing little or no disability (Nuffield Council on Bioethics Citation2006). According to at least some current data, this would locate the margin of viability as low as 24 weeks, when infants survive approximately 55% of the time (with around 30% surviving without moderate or severe impairment) (Rysavy et al. Citation2015, Table 2). In U.S. discussions of abortion, viability is often said to occur between weeks 24 and 28. On either account, resuscitating a 23-week infant resuscitates a baby that, were it still in the mother's womb, could be legally aborted. The tension here is obvious, and leads many to be uncomfortable both with early resuscitations and later abortions.
19. This would be analogous to arguments that we should weight risks significantly more heavily than benefits in our reasoning about uncertainty, so as to arrive at a relatively cautious decision theory.
20. Although it should be noted that even if he survived, it was very likely that Baby Boy N would be exposed to a long period of high-intensity medical intervention. According to Tyson and colleagues, those boys who are born at 23 weeks who are fortunate enough to survive without profound impairment average 135 days on a ventilator, and 272 days in the hospital. Thus, even the very best case for Baby Boy N would likely not have been without significant hardship (2008, Table 4).
21. For an elegant argument to this effect, see Little (Citation2005).
22. According to the data in Rysavy et al. (Citation2015, Table 2), approximately 72% survive, with 44.3% surviving without moderate or severe impairment.
23. It may well be the case that the vast majority of parents in such a case request that “everything be done,” and thus their wishes are not often set against current norms. However, it still matters whether we take parents to have the authority to decide otherwise. It certainly matters for any (perhaps rare) case in which the parents do decline resuscitation, but it also matters in setting up how the issue is approached in the first place. Medical teams should have a substantively different discussion with parents if resuscitation is morally optional rather than obligatory. My thanks to an anonymous referee for raising this point.