Kennedy Institute of Ethics Journal

Dominic Wilkinson, a neonatal physician and medical ethicist, has written a searching, moving, and philosophically sophisticated book about the [End Page E-4] ethics of life and death decision making in the neonatal intensive care unit. Although I will devote much of this review to criticism, I want to say at the outset that Death or Disability represents interdisciplinary work at its very best. Wilkinson’s exposition is both rich in detail and uncompromising in its ethical analysis. He spares the reader none of the clinical, psychological, and moral complexities and uncertainties of the decisions made daily in the neonatal intensive care unit (NICU).

I especially recommend this book to moral philosophers and practical ethicists worried that their debates on issues like time-relative interests and non-identity are ingrown and academic. Wilkinson explains the relevance of these and other seemingly arcane issues to the real, wrenching decisions that parents, physicians, and the larger society must make about the treatment of newborns at risk of very severe impairment.

After briefly outlining the structure of the book and some of its complex arguments, I will focus on three of the few areas where Wilkinson’s thorough, painstaking analysis strikes me as incomplete: the role of impersonal considerations in decisions about continuing or ending the lives of impaired neonates; the implications of the time-relative interest account Wilkinson adopts for balancing potentially conflicting interests in the neonate’s survival; and the role of physicians in helping to make neonatal treatment decisions under the threshold framework Wilkinson proposes.

The book begins with two prologues about imagined visits to learn the fate of a sickly neonate: one to the Roman Temple of Carmentis in 30 AD, the other to The Carmentis Machine in 2030. These prologues are vivid and engaging, but a bit disorienting. They give the reader the impression that Wilkinson will be focused on the implications of prognostic technologies that enable physicians and parents to reliably predict a neonate’s development. But the book is not, or is much more than, an exercise in speculative bioethics. The second, longer half is devoted to decision making under the prognostic uncertainty that we will continue to face in the near future. Moreover, the first half focuses on (relative) certainty only about significant neonatal impairments certainty that current physicians and parents can sometimes achieve. Wilkinson does not discuss the issues that would be raised by information about minor health conditions and nonmedical characteristics, which the Carmentis Machine would reveal. Those issues are interesting in their own right, but they would distract from his intense focus on the dilemmas posed by severely impaired neonates. [End Page E-5]

Wilkinson begins his analysis by explaining how the contemporary NICU forces painful decisions on parents and physicians: it keeps alive 23-28 week-old neonates who would have previously died, but who face extremely severe physical and cognitive impairments once they leave the unit. He illustrates the difficulties with detailed accounts of real and composite cases, to which he refers back throughout the book. In chapter 2, he considers the prevailing standard for making those decisions: with reference to “the best interests of the child.” He questions how, or even whether, neonatal decision makers can assess those interests, or judge that a neonate will have a life “not worth living.” He argues that they make those judgments, albeit with an uncomfortable degree of speculation, by balancing the expected benefits and harms of the neonate’s continued life. But he departs from the best-interests standard in arguing that the interests of parents, siblings, and others should also be taken into account.

Chapter 3 argues that impersonal considerations, concerning the effect of a decision about neonatal treatment on aggregate well-being, do not have a significant role to play in making those decisions. This chapter raises a number of philosophically interesting claims that I discuss below. Chapter 4 concludes Part I with a richly detailed review of the potentially...