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08/03/2017

What We Do When We Resuscitate Extremely Preterm Infants

by Jeremy R. Garrett, Brian S. Carter & John D. Lantos

This editorial is made available on bioethics.net. The editorial along with the target article and open peer commentary is available via tandfonline.com

Neonatal intensive care is one of the most successful medical innovations of the last half century. Every year, in the United States alone, nearly 500,000 babies are born prematurely. Before neonatal intensive care, most of those babies died, and those who survived often suffered significant life-limiting impairments. Today, most preemies survive without impairments.

In spite of this success, neonatal intensive care unit (NICU) care has always been viewed as ethically problematic. The objections to this care have taken different forms at different times.

Economists questioned whether neonatal intensive care was cost-effective. Careful studies showed that it was more cost-effective than any other form of intensive care, and even more cost-effective than many modalities of preventive care (including, for example, Pap smears).

Some parents claimed that doctors were not honestly informing them of the potential long-term sequelae of NICU care, and that, if honestly informed, many parents would choose palliative care. Careful studies showed that these parents were unusual. Most parents want more intensive care than even doctors and nurses think is appropriate, and they want it even when informed that survivors might be left with significant disabilities.

Bioethicists and doctors argued that neonatologists were playing God, that premature babies were not full-fledged persons, and that saving disabled babies was like an ill-conceived military mission. Each of these attempts to undermine the commitment made by parents, doctors, and society to saving preemies has been met with hard questions and strong rebuttals. But people just keep trying to find reasons why we shouldn’t offer treatment that might save the lives of tiny babies.

The argument that Travis N. Rieder makes in his target article—that extremely preterm infants are not “fully created” persons, and hence that a less demanding ethics of creation supplants an ethics of rescue—is another in this long line of attempts to find some philosophical formula to show why so many people’s instincts and conclusions are just wrong. It is as earnest as the rest but, like them, fundamentally flawed.

Reflecting on the litany of objections to neonatal care for the tiniest babies, one can discern a clear pattern. Neonatal intensive care either is deemed inappropriate (1) regardless of the moral status of the preemie (e.g., it’s too often futile, it’s not often cost-effective, it’s “playing God,” etc.) or (2) because of the moral status of the preemie (e.g., extremely preterm infants are not persons). Rieder’s “creating rather than saving” argument clearly fits this second strand of argument. Importantly, however, Rieder seems to reject the underlying premise of previous personhood objections—namely, the presupposition that personhood is a bivalent, all-or-nothing property that a being or entity either possesses or lacks. Instead, Rieder reconceptualizes personhood as a creative process that gradually unfolds over the course of a normal term pregnancy. On this account, preemies at the borderline of viability (i.e., 24 weeks or earlier) are partially created persons. As a result, he suggests, their moral status is neither that of a fully created human person nor that of inanimate matter. Hence, the relevant moral question in regard to these hybrids is not whether a person should be saved, but instead whether neonatologists have a right or an obligation to direct the remaining process of creating a person.

Rieder’s argument depends on the plausibility of three kinds of claims:

        1.

Factual claim: Human creation is a process.

2.

Conceptual claim: Neonatologists engage in the act of “creating” rather than “rescuing” persons.

3.

Normative claim: Decision making for partially created persons, including extremely preterm infants, should be guided by “creation ethics” rather than “rescue ethics.”

All three raise objections not sufficiently addressed by the author. The factual claim, while plausible on its face, is not sharply defined or adequately supported. Thus, it is unclear when and under what conditions that process has culminated and a human person is “fully created.” Meanwhile, the normative claim depends on the factual claim and so inherits its problems. What is worse, the normative claim implies that not only preemies but, presumably, all not-yet-fully-created persons lack the moral status to which an ethics of rescue applies. By Rieder’s logic, this could apply to term newborns, infants, toddlers, or preschoolers, all of whom are in the process of becoming fully formed adult persons. If Rieder wants to limit his normative claim to only babies of some gestational age, he must explain why, and do so in the terms of his continuum of creation. At what stage of the creation process is one created enough to deserve rescue? And why?

These problems are serious and would require significant revision to resolve. Even then, any detailed, substantive account of the process by which personhood obtains is likely to be deeply controversial. In fact, we find Rieder’s conceptual claim to be the most dubious of the three. He fails to consistently distinguish between “creating persons” in the purely biological sense of producing new human beings and “creating persons” in the morally significant sense of rendering such beings with the moral status of personhood. This equivocation is objectionable in its own right, but especially because Rieder’s argument depends centrally upon the claim that neonatologists are creating persons in the moral sense. We reject the idea that neonatologists “create” persons not because we think that it is mothers who do this work instead, but rather because we deny that any human agent can “create” the moral status of personhood in the first place. Indeed, to hold that moral personhood itself is “created” through intentional human action of any kind is to make a category mistake. Personhood is not a biological, psychological, or purely relational category, and it does not obtain because someone deliberately and with full control of the process brought it about. Neonatologists cannot create nor confer moral personhood through technological intervention any more than mothers can do so through biological means. Legally, of course, we can take or withhold the legal status of citizenship. We can give or take away legal rights from some categories of persons. But as a moral category, personhood is innate, rather than created or conferred.

So, if neonatologists are not “creating” persons when they resuscitate extremely preterm infants, what exactly are they doing? Our answer is simple, but at the same time rich with moral significance: Neonatologists are, at the most relevant and general level of description, doing precisely the same basic work as all other physicians. Neonatologists balance their goal of helping patients and families with the recognition that there is always a risk of harm. Newborns, like other patients, are sick people in need of medical care. Parents can be helped to understand the risks and benefits of treatment and then to make decisions for their premature babies as they would for other loved ones who cannot make decisions for themselves. That, at the most general level, is what neonatologists do when they resuscitate extremely preterm infants.

More specifically, though, neonatologists simultaneously engage in acts of “creation” (though not the creation of moral personhood) and “rescue” throughout the course of care provided to infants and families. Through their careful attendance and skillful application of life-supporting technologies, they create an opportunity to sustain the lives of the fragile newborns who are their patients. An ongoing process of rescue extends into the NICU, where expert care by doctors, nurses, respiratory therapists, and other highly trained professionals allows babies to live, grow, and develop.

Along with these technical interventions, the neonatologist must quickly create a therapeutic alliance with the parents predicated on trust and a shared commitment to the patient. As with all doctor–patient–family interactions in situations of critical illness, there may be disagreements or uncertainties about the goals of intervention and likelihood of reaching those goals. The neonatologist must not only care for the baby’s medical needs but also, at the same time, try to understand the family’s hopes, fears, goals, and values.

Contrary to Rieder’s account, NICU care is all about rescuing, rather than creating, persons. The specific reasons for rescue may vary in each clinical situation, each day, and with each new medical complication. At each stage, the mutual commitment to ongoing rescue efforts requires an ongoing process of shared decision making by parents and doctors. Sometimes it becomes apparent that the chances of rescue are low, and the likelihood of ongoing harm is high. At that point, doctors, nurses, and parents should pause, recognize that a major turn of events has transpired, and reassess the goals of treatment.

Importantly, however, these are the same fundamental responsibilities borne by physicians throughout the hospital. None of these agents have the power to “create” persons, nor do many aspire to such status. Indeed, not only would most neonatologists recoil from Rieder’s characterization of their actions as “hubris,” they likely would not even accept the term “co-create”. They are not “creating” a person. They are working with a critically ill and desperately needy patient and with a family that, in almost all cases, has made a connection with and a commitment to the patient.

Resuscitating and treating extremely preterm infants is rife with uncertainty. But the same is true of transplantations, treating aggressive cancers, and myriad other medical interventions. There are no givens about how any particular newborn will respond to resuscitation or treatments in the NICU, how long she will abide in the NICU, how her parents will love her, or how her community will receive her upon discharge weeks to months later. There is only a choice at the moment of delivery about what may be possible with resuscitation and continued support in the NICU, and what is certain if it is not provided—the baby’s death and the irreversible shattering of family aspirations.

In our considered judgment, then, it is time to stop viewing premature babies as less than human. Nothing in Rieder’s argument gives us pause about this conviction. For those NICU exceptionalists who claim that the decision to resuscitate preemies in the NICU is fundamentally different from decisions about all other medical interventions, the search for justification continues. We hope to have convinced a few to abandon this mission.

 

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