Optimizing Decision-Making in the Gray Zone at Birth.

Abstract

A provocative Target Article in this issue of AJOB proposes a new approach to decision-making for babies born in the “gray-zone” at the margins of viability. Titled “Postponed Withholding: balanced decision-making at the margins of viability,” (Syltern et al. 2022) it addresses a well-known problem in neonatal bioethics. Doctors and parents often agonize about what to do since treatment is neither clearly futile nor clearly beneficial and a decision about providing or foregoing life-prolonging treatments must instantly be made (Janvier et al. 2017). In this “gray zone,” many options are legal, reasonable people disagree about the right thing to do, and a decision must be made. The proposed approach may not be the ultimate solution to these dilemmas but, for reasons that I will show, it should help us think about what is at stake in different approaches to these complicated decisions. Janicke Syltern et al. start by explaining why these decisions are medically, ethically and emotionally so complex. They argue that, given this complexity, the parents are the legitimate owners of decisions in the gray zone and shared decision-making (SDM) is the appropriate process. In practice, however, the emotional stress and ethical complexity can inhibit a truly shared process of decision-making. As these authors note, parents are often overwhelmed by the invitation to participate and the need to make a rapid decision. This is why they propose a 3-part strategy to improve the process by which physicians work with parents to make these decisions. The aim of this strategy is to give the parents enough time to become competent, empowered decision-makers and promote SDM. The proposed strategy is that: (1) life-sustaining treatment should be started as a default for all extremely preterm infants in the gray zone; (2) this should be labeled a non-decision and considered as only a temporizing delay in decision making; (3) a planned decision about further intensive care should be made at one week; At that point, the default action should be to redirect to compassionate care and cease life-prolonging measures for infants who still fall in the gray-zone unless parents explicitly ask for continued life-support. The authors refer to this as “the postponed withholding approach” (PPWH) because it allows the parents to opt for intensive care, or not, after a week. The approach tries to capitalize on the phenomenon that, for many people, withholding treatment feels preferable to withdrawal of treatment. PPWP is presented as a practical and well-considered way of dealing with two problematic realities at the bedside that are familiar for all healthcare providers and parents involved in NICU-care. First, for babies in the gray zone, it is impossible to know each baby’s outcome and so it is uncertain whether resuscitation or comfort care is the best choice. Second, although SDM is preferred, the unexpected nature of preterm birth and the need for an immediate decision make it often impossible to adequately inform and involve the parents. The approach is not perfect. In the Open Peer Commentaries, both health care providers and parents raise prescient objections and reservations at PPWP. They point out that sometimes there is enough time for proper counseling and default resuscitation is not appropriate; that a week of intensive care may not be the right time-frame; that withdrawal aversion in parents and HCP’s may not be universal; that ongoing evaluation may be better than default redirection of care; and that PPWP terminology could be more confusing than terms like “trial of therapy” or “informed non-dissent.” If nontransparent or confusing, PPWP could cause physicians’ moral distress and could influence parental trust in their doctors. Other nuances could and probably should be added. Clearly, the PPWP approach is not the holy grail to decision-making about premature newborns in the gray zone. But it is valuable. Decisions at birth are