Borderline Viability: Controversies in Caring for the Extremely Premature Infant

Key points

Legal conflict with guidelines?

It is rare that when physicians and family agree on a plan there are any legal ramifications. Although it is beyond the scope of this article to review in detail the pertinent legal cases that might have an impact on this issue, there are at least four cases that deserve mention. One case is that of a father who withdrew support on his 26-week gestation infant after he was resuscitated against parental wishes. The father was acquitted of wrong-doing.¹⁹ A second case involved a physician who

Argument 1 against guidelines: a trial of assessment and treatment for all

The emergency claim that would require a trial of assessment and treatment of all periviable newborns is based on four premises²⁵: (1) assessment of gestational age after birth is more accurate; (2) assessment of vigorousness adds prognostic information; (3) testing treatment responses in first hours to days provides more facts or certainty to help determine long-term prognosis and therefore decreases speculation; and (4) treatment withdrawal is ethically equivalent to withholding, from the

Preterm birth can be but is most often not an emergency situation

The science and ethics support that there are factual problems with each premise of emergency trial of assessment and treatment mandate. What is distinctively different in the perinatal care environment is that in most cases there are reasonable and accurate data on the fetus (gestational age, sex, weight, maternal steroids) that can help with prognosis, and time to counsel families about these issues before initiation. Perinatal data from surveys that include births at the margin of viability

Argument 2 against guidelines: they are discriminatory and lack ethical and scientific basis

Several authors have challenged the ethical and scientific basis for setting up these thresholds, claiming they set up too simple of rules for a complicated ethical decision.51, 52, 53, 54, 55 They argue that preterm infants seem to have a different moral status than everyone else. There are few to no other policy statements in the literature regarding resuscitation from an age perspective for any other life-threatening situation (eg, head trauma, near-drowning, meningitis, stroke, or burns).⁵²

Argument 3: doctor knows best

Often the real moral controversies come up on a case-by-case basis at the borderline viable newborn. Batton⁵¹ acknowledged the difficulty for the American Academy of Pediatrics (AAP) Committee on Fetus and Newborn in formulating guidelines because of individual personal convictions. The goal in this article cannot be to change anyone’s mind. However, thinking about constructs of pediatric surrogate decision-making, and recognition of conflicting interests and uncertainties, might help

Best interest

All consensus statements, and all those who have concerns about those consensus statements, would likely agree that the goal of neonatal medicine is to minimize undertreatment and overtreatment of the extremely premature infant. All advocate that the decision-making process ought to be based on the concept of the infant’s best interest. The best interest standard, theoretically a beneficence-based decision for the patient whose wishes are unknowable, is the core ethical principle in neonatal

Constrained parental autonomy

Another construct for pediatric decision-making is that of constrained parental autonomy.⁶⁴ In this construct, the infant’s interests are not taken in isolation, but within the framework of an intimate family. If the self-regarding interests of a child conflict with the family goals or interests, the parents may compromise the interests of the child, as long as it is not sacrificing the child’s basic needs. The constraining of parental autonomy is based on respect for persons. Respect is (1)

Uncertainty and harm

When making a decision for an extremely preterm infant there are actually many levels of uncertainty.⁶⁰ On one level there is medical prognostic uncertainty. What complicates predictions includes variations in an individual’s genetic or physical susceptibilities, their psychological ability to cope with the physical, neuroplasticity, and the environment. These help determine experiential uncertainty; how happy or unhappy will the survivor be, how difficult will they find their outcome, how much

Debate about counseling

NICUs have moved toward the concept of family-centered care. Much of this was in response to parent advocates voicing concerns about families being at the mercy of accelerated technology. Although it is easy at some level to think about family-centered care as supporting parental involvement through education and understanding of their infant and child, it’s basis was about being involved in decision-making.72, 73 It seems the acceptance of the concept of family-centered care, combined with the

Debate about cost

The issue of cost often arises during discussions regarding the resuscitation of the borderline viable infant. Writings on the ethics of extreme prematurity frame this as a complex issue of balancing interests of infants, parents, professionals, and society. The United Kingdom’s Nuffield Council on Bioethics states “There is now much broader public awareness of the need for difficult choices to be made by the providers of national healthcare… Contentiously, this has caused questioning of

Summary

Although there continues to be ethical discussion about extremely premature infants, it is not clear there are many hotly debated controversies. There is a broad consensus on guidelines that are available as just that, guidelines. There are excellent conversations in the literature about counseling and how it can be improved, in how to provide data, and how to assess values. The real controversies regarding the borderline viable neonate are when an individual physician may disagree with the