10 - Extreme Prematurity: Truth and Justice

Summary

In this chapter I will consider some of the ethical issues that surround the management of the extremely preterm infant (EPTI). Such infants are characterized by a gestational age (GA) of less than 28 weeks. However, in practice, within this group, those who give rise to the most ethical concern are the ones who are born at less than 26 weeks. The issues raised by this group are discussed in several chapters in this book and include, in particular, parental rights and responsibilities; the forgoing of life-sustaining treatment; and the usefulness or otherwise of such words as “best interests,” “benefits,” “burdens,” and “futility,” which, incorrectly used, can both cloud and taint a coherent moral approach. I will not repeat these topics, but rather I will highlight the lack of use, misuse, and misinterpretation of empirical data to shape and drive ethical and medical management. This will include perceptions concerning prognosis, delivery room resuscitation, and justice, both distributive and personal.

There is an ongoing concern that continuing to care for and save the lives of EPTIs comes at the inevitable expense – to some babies, families, and society – of disability, emotional trauma, and financial cost. Because mortality and morbidity increase with decreasing GA and weight, it is argued that a line should be drawn on the basis of these measures, such that the provision of active care to a baby born at less than 25 weeks or 600g should be optional. But not only is there uncertainty about the outcome for the individual child, there is also poor understanding of the types of disability that may occur and the accuracy of predicting GA and weight.