Life-sustaining treatment is sometimes withdrawn or withheld from critically ill newborn infants with poor prognosis. Guidelines relating to such decisions place emphasis on the best interests of the infant. However, in practice, parental views and parental interests are often taken into consideration.In this paper I draw on the example of newborn infants with severe muscle weakness (for example spinal muscular atrophy). I provide two arguments that parental interests should be given some weight in decisions about treatment, and that they should (...) be given somewhat more weight in decisions about newborns than for older children. Firstly, the interests of the infant and of parents intersect, and are hard to separate. Parents’ views about treatment may be relevant to an assessment of the infant’s interests, and they may also affect those interests. Secondly, the interests of the infant in her future are relatively reduced by her developmental immaturity. In some situations parents’ welfare interests outweigh those of the infant. However, I argue that this would not justify treatment limitation except in the setting of severe impairment. (shrink)

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support int...

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: (...) the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion—indeed, a full reimagining—of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally. (shrink)

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.”. (shrink)

In 2017, Partridge et al. published remarkable experimental results concerning the use of a new artificial womb technology (AWT) with lambs, developed at Children’s Hospital of Philadelphia, called...

In this paper, a personalist ethical perspective on end-of-life care of severely ill newborns is presented by posing two questions. (1) Is it ethically justified to decide not to start or to withdraw life-sustaining treatment in severely ill newborns? (2) Is it ethically justified, in exceptional cases, to actively terminate the life of severely ill newborns? Based on five values—respect for life and for the dignity of the human person, quality of life, respect for the process of dying, relational autonomy, (...) and justice—an ethical assessment is conducted that brings us answers to the two ethical questions. (1) Noninitiation or withdrawal of life-sustaining medical treatment in severely ill newborns is ethically acceptable, and might even be a moral duty, when initiation or continuation of medical treatment can be considered futile or even harmful. (2) However, according to the personalist approach, it is not ethically acceptable to actively terminate the life of a severely ill newborn. (shrink)

BackgroundMultidisciplinary study groups have produced documents in an attempt to support decisions regarding whether to resuscitate "at risk" newborns or not. Moreover, there has been an increasingly insistent request for juridical regulation of neonatal resuscitation practices as well as for clarification of the role of parents in decisions regarding this kind of assistance. The crux of the matter is whether strict guidelines, reference standards based on the parameter of gestational age and authority rules are necessary.DiscussionThe Italian scenario reflects the current (...) animated debate, illustrating the difficulty intrinsic in rigid guidelines on the subject, especially when gestational age is taken as a reference parameter for the medical decision.SummaryConcerning the decision to interrupt or not to initiate resuscitation procedures on low gestational age newborns, physicians do not need rigid rules based on inflexible gestational age and birth weight guidelines. Guidance in addressing the difficult and trying issues associated with infants born at the margins of viability with a realistic assessment of the infant's clinical condition must be based on the infant's best interests, with clinicians and parents entering into what has been described as a "partnership of care". (shrink)

Background: Relatively little is known about neonatologists' roles in helping families navigate the difficult decision to attempt or withhold resuscitation for a neonate delivering at the threshold...

ObjectiveTo present (1) the ethical concepts related to the debate on resuscitation of extremely premature infants (EPIs) as they are described in the ethical literature; and (2) the ethical arguments based on these concepts.DesignWe conducted a systematic review of the ethical literature. We selected articles based on the following predefined inclusion/exclusion criteria: (1) English language articles (2) presenting fully elaborated ethical arguments (3) on resuscitation (4) of EPIs, that is, infants born before 28 weeks of gestation.AnalysisAfter repeated reading of articles, (...) we developed individual summaries, conceptual schemes and an overall conceptual scheme. Ethical arguments and concepts were identified and analysed.ResultsForty articles were included out of 4709 screened. Personhood, best interest, autonomy and justice were concepts grounding the various arguments. Regarding these concepts, included authors agreed that the best interest principle should guide resuscitation decisions, whereas justice seemed the least important concept. The arguments addressed two questions: Should we resuscitate EPIs? Who should decide? Included authors agreed that not all EPIs should be resuscitated but disagreed on what criteria should ground this decision. Overall, included authors agreed that both parents and physicians should contribute to the decision.ConclusionsThe included publications suggest that while the best interest is the main concept guiding resuscitation decisions, justice is the least important. The included authors also agree that both parents and physicians should be actively involved in resuscitation decisions for EPIs. However, our results suggest that parents’ decision should be over-ridden when in contrast with the EPI’s best interest. (shrink)