In a crisis, societal needs take precedence over a patient’s best interests. Triage guidelines, however, differ on whether limited resources should focus on maximizing lives or life-years. Choosing between these two approaches has implications for neonatology. Neonatal units have ventilators, some adaptable for adults. This raises the question of whether, in crisis conditions, guidelines for treating extremely premature babies should be altered to free-up ventilators. Some adults who need ventilators will have a survival rate higher than some extremely premature babies. (...) But surviving babies will likely live longer, maximizing life-years. Empiric evidence demonstrates that these babies can derive significant survival benefits from ventilation when compared to adults. When “triaging” or choosing between patients, justice demands fair guidelines. Premature babies do not deserve special consideration; they deserve equal consideration. Solidarity is crucial but must consider needs specific to patient populations and avoid biases against people with disabilities and extremely premature babies. (shrink)

Policies and position statements regarding decision-making for extremely premature babies exist in many countries and are often directive, focusing on parental choice and expected outcomes. These recommendations often state survival and handicap as reasons for optional intervention. The fact that such outcome statistics would not justify such approaches in other populations suggests that some other powerful factors are at work. The value of neonatal intensive care has been scrutinized far more than intensive care for older patients and suggests that neonatal (...) care is held to a higher standard of justification. The relative value placed on the life of newborns, in particular the preterm, is less than expected by any objective medical data or any prevailing moral frameworks about the value of individual lives. Why do we feel less obligated to treat the premature baby? Do we put newborns in a special and lesser moral category? We explore this question from a legal and ethical perspective and offer several hypotheses pertaining to personhood, reproductive choices, “precious children,” and probable evolutionary and anthropological factors. (shrink)

The extremely preterm infant, born before 28 weeks of gestational age, has been the focus of much ethical discussion. These infants have a significant risk of mortality and morbidity, and it is not...

Background: It is not known how neonatologists address the affective and cognitive loads on parents deciding whether to resuscitate infants born extremely preterm. This study explores expert neonatologists' views on these decision-making processes and their own roles in counseling parents. Methods: Semistructured interviews asked internationally recognized experts to share their perspectives on perinatal consultations. Their responses were subjected to thematic analysis. Results: Eighteen of 22 invited experts participated. Approximately equal numbers reported employing a physician-driven approach, a parent-driven approach, and a (...) combined approach during these consultations. Those who followed a physician-driven approach typically focused on conveying standard information about adverse outcomes. Those who followed a parent-driven approach typically focused on addressing parents' information requests, guiding their decision making, and providing affective support. Nearly all experts, in each group, endorsed addressing the child's quality of life, in terms of functionality, when discussing long-term outcomes. Although many believed that families adjusted to life with a disabled child, few discussed the topic during prenatal consultations. Most, in each group, reported trying to alleviate future “decisional regret” for parents whose premature infants subsequently became disabled. None spoke to parents about possible decisional regret after deciding to forgo resuscitation. Conclusions: Expert neonatologists are deeply concerned that parents understand the decision facing them. However, they differ on what information they offer and how they balance parents' need for cognitive and affective support. They expressed more concern about parents' decisional regret should their child survive resuscitation, but have severe disability, than about decisional regret after foregoing resuscitation. (shrink)

For a minority of children managed in the NICU, there is a need for more complex technologic assistance in order to sustain life, mitigate a more chronic debilitation from a pervasive life-limiting condition, or provide a bridge from life-sustaining therapy to a more semi-permanent treatment such as organ transplantation. This chapter will address two major types of technology assistance for infants and children—tracheostomy and assisted home ventilation, and dialysis—and the myriad complications and considerations that they raise. Some attention to why (...) clinicians may be so inclined to impose technology as a solution to life-limiting conditions will be noted, as well as why some parents may seem to insist on pursuing technology. (shrink)

Five years ago, remarkable animal experiments on artificial womb technology (AWT) at Children’s Hospital of Philadelphia (CHOP) got us thinking about the ethical for premature babies. We recognized...

Volume 20, Issue 7, July 2020, Page 13-14.

The American Journal of Bioethics, Volume 11, Issue 11, Page 18-20, November 2011.

Moral distress is prevalent within the neonatal intensive care unit (NICU) and can negatively affect clinicians. Studies have evaluated the causes of moral distress and interventions to mitigate it...