Shifting boundaries of premature birth: Ethical implications of periviability

Since the 1960s, the gestational age at which babies can survive outside the uterus, called periviability, has decreased by one week per decade. The intrinsic biological determinants of pulmonary development have not changed, but many extrinsic factors have increasingly influenced viability, primarily the progress in neonatal intensive care. Periviable infants do not survive without life-sustaining interventions immediately after delivery, and the availability of resources will generate outcome differences.

Besides neonatal care, the single most important intervention available to improve the health outcomes of preterm newborns is the maternal administration of corticosteroids. The extent of benefit derived from this intervention is inversely proportional with gestational age; however, it is conditional on survival capacity and associated morbidity.

The concept of a limit of viability is clinically vague and simplistic. Still, for every practical purpose, the limit has been frequently decided based on observational data indicating a benefit on mortality and morbidity after exposure to antenatal corticosteroids. For several decades, the earliest gestational age for antenatal corticosteroids applicability was 24 weeks.

Following the publication in 2011 of a retrospective cohort study analyzing mortality and morbidity data collected by the National Institute of Health and Human Development (NICHD) Neonatal Research Network, antenatal corticosteroids started to be widely used even for impending delivery at 23 weeks gestation.

In 2022, the NICHD Neonatal Research Network published a retrospective cohort study using prospectively collected data from 2016 to 2019, finding increased survival to hospital discharge and increased survival without major morbidities even in infants born at 22 weeks gestation after exposure to antenatal corticosteroids and post-natal life support. The findings were consistent with three previous publications between 2018 and 2021. On such evidence, in 2021, the American College of Obstetricians and Gynecologists (ACOG) stated that antenatal corticosteroids could be considered at 22 weeks gestation when active postnatal management is desired.

Witnessing this progressive trend toward earlier and earlier intervention, one must recognize that even with the coordinated provision of antenatal corticosteroids and active postnatal care, survival at 22 weeks is still a toss-up (38 to 53%). Survivors face a high probability of neurodevelopmental impairment (77 to 96%) and other long-term adverse health outcomes. Consequently, periviability care has emerged as one of the greatest challenges of bioethics.

In the case of periviability, there is considerable uncertainty about whether interventions result in a greater balance of clinical good over harm. When the likelihood of survival is small, treating with the knowledge that the effort will often be unsuccessful and that it may inflict suffering on the majority of neonates and their families might be unjustified. However, accepting this does not resolve the moral uncertainty about who should make these decisions and on what basis.

Since fetuses and newborns do not have decisional autonomy, these decisions must be negotiated between physicians and surrogate decision-makers – the parents. Both have a moral duty to act in the best interest of the patient. However, during periviability, an infant’s best interest is an ambiguous, incoherent and unknowable standard. Different people may interpret the best interest of the infant differently.

With more advanced gestation, when treatment is reasonably expected to be beneficial, in my opinion, the infant’s right to treatment outweighs the parent’s right to make medical decisions for their child. However, when there is uncertainty and controversy about the expected benefit of intervention at earlier gestational ages, the parents’ moral obligation to authorize it decreases and their authority to refuse increases. When establishing a prognosis is largely speculative, ACOG and the American Academy of Pediatrics endorse parental discretion in these cases. At the same time, parental choice should only be respected within the limits of what is medically feasible and appropriate. Providers have no ethical obligation to abide by futile treatments that do not prolong life.

When disagreements between parents and physicians occur, how can consensus be achieved? Legal action should be used as a last resort. Preferably, local ethics committees or clinical ethics consultants should be involved. Ethics committees and consultants do not have decisional authority; they can only provide a recommendation. However, ethicists can function as moderators during counseling and discussions between parents and the healthcare team.

Family counseling is an important component of periviability discussions. Ideally, it should take place before birth, and decisions regarding resuscitation should not be conditional on a newborn’s appearance at birth. A wait-and-see approach is outdated. ACOG and the American Academy of Pediatrics note that family counseling should be coordinated, evidence-based counseling methods should be incorporated, and a discussion of the benefits and risks should be included, along with a plan for follow-up counseling as clinical circumstances evolve. They also call for more research and educational curricula on the care and counseling of families facing the birth of a periviable infant.

Regardless of the decision, it is important to assure ante- and postnatal care coherence. It has been reported that when there is a lack of agreement between obstetricians and neonatologists, there is a 2.4-fold increase in mortality in the first 24 hours of life of extremely preterm infants. In the not-so-rare occasion when preterm delivery is emergent and the available obstetrical information is limited, one should resuscitate first, evaluate and talk later. Initiation of life support is the only reversible action; death is not.

At the end of the day, who should be the final decision-maker in cases of persistent disagreement between parents and physicians in periviability situations? Even in countries like the U.S., where professional guidelines suggest that in conditions of prognostic uncertainty, interventions should be based on parental informed preferences, the translation in practice of such provisions varies, and, in my experience, there is no clearly established standard of care.

Among surveyed neonatologists in New England, 24% would still resuscitate in the delivery room against parental wishes, while 100% would resuscitate at parental request. In another survey of neonatologists in New Jersey, the rate of neonatal resuscitation against parents’ wishes was markedly influenced by gestational age: 80% at 24 weeks, 15% at 23 weeks and 0% at 22 weeks. Still, at 22 weeks, 25% of neonatologists would attempt resuscitation at the parents’ request.

Navigating the periviability interval requires a delicate balance of medical expertise and ethical consideration. Early involvement of the obstetric and neonatal team is pivotal to put forward a coherent, non-confusing, non-paternalistic, and balanced plan of care. Following appropriate counseling with the parents, the physicians will frame the information disclosed during counseling based on the local standards, local outcome data and local availability of periviable neonatal support.

This blog is based on a paper, The Ethics and Practice of Periviability Care.

By Dr. Alex C. Vidaeff, professor in the Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology at Baylor College of Medicine and Texas Children’s Hospital Pavilion for Women