Infants of borderline viability: The ethics of delivery room care

Summary

For more than half a century neonatologists and ethicists alike have struggled with ethical dilemmas surrounding infants born at the limits of viability. Both doctors and parents face difficult decisions. Do we try to save these babies, knowing that such efforts are likely to be unsuccessful? Or do we provide only comfort care, knowing that, in doing so, you will inevitably allow some babies to die who might have been saved? In this paper, we review the outcome data on these babies and offer ten suggestions for doctors: (1) accept that there is a ‘gray zone’ during which decisions are not black and white; (2) do not place too much emphasis on gestational age; (3) dying is generally not in an infant's best interest; (4) impairment does not necessarily equal poor quality of life; (5) just because the train has left the station doesn't mean you can't get off; (6) respect powerful emotions; (7) be aware of the self-fulfilling prophecies; (8) time lag likely skews all outcome data; (9) statistics can be both confused and confusing; (10) never abandon parents.

Introduction

For over half a century neonatologists and ethicists alike have struggled with ethical dilemmas surrounding infants born at the limits of viability. The odds are against such babies. Most die, and the majority of survivors have long-term chronic health problems. Both doctors and parents face difficult decisions. Do you try to save them, knowing that such efforts are likely to be unsuccessful? Or do you provide only comfort care, knowing that, in doing so, you will inevitably allow some babies to die who might have been saved? The decisions are not black or white. Thus, this domain of clinical decision-making is often referred to as ‘the gray zone’.

The delineation of the gray zone has shifted over time. Today, in most developed countries, babies born at 22–24 weeks are considered to be in the gray zone.

Over the last 30 years, survival rates at every gestational age down to 22 weeks have improved but the percentage of survivors with disabilities of one sort or another has remained stubbornly unchanged [1]. How, then, should doctors and parents weigh the evidence, the probabilities, and the uncertainties and arrive at a decision together? In this paper, we review the available literature on outcomes for extremely premature infants, on the neurocognitive outcomes for survivors, and on the impact of prematurity on the family unit. Finally, we review available guidelines and practice variation across the globe and conclude with our own recommendations.