© Springer Science+Business Media Dordrecht 2016
Eduard Verhagen and Annie Janvier (eds.)Ethical Dilemmas for Critically Ill BabiesInternational Library of Ethics, Law, and the New Medicine6510.1007/978-94-017-7360-7_1111. Making Tough Ethical Choices in a Morally Pluralistic World
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Children’s Mercy Bioethics Center, Department of Pediatrics, University of Missouri-Kansas, Columbia, Kansas City, MO 65211, USA
Abstract
This book uses neonatal intensive care as an example of the complex decisions that must be made as we try to harness ambiguous technology to human ends. The answers that we have come to about decisions in the NICU are not settled or final. The process of coming to moral consensus is iterative, non-linear, and ongoing. Scientific discoveries change the way we think about what it means to be human and what it means to live in community. Each story of scientific discovery and innovation is a story of the struggle to find the balance between the new emerging possibilities for human flourishing, and the risks and dangers that are held within it.
This book presents discussions of difficult dilemmas in neonatal bioethics. There are many issues about which reasonable people disagree. The process of hammering out a moral consensus within pluralistic, diverse, democratic societies is a messy one. It requires discussion and debate among scholars in fields as diverse as economics, moral philosophy, law, literature, disability studies, epidemiology, psychology, communication studies, theology, sociology, political science and anthropology. Discussions take place with families and doctors at the bedsides of critically ill babies, in the media, in film and literature, in scholarly journals, in the courts, in profess and in government advisory committees and task forces. This complicated discussion has allowed us, as a society, to clarify our understanding of and commitment to certain moral obligations to premature babies.
As the various chapters in this book show, there is still plenty of debate and discussion. Some people view today’s policies and practices as inadequate or morally problematic in all sorts of ways. Some argue that parents’ rights are violated by the current approach that focuses on the independent rights of baby. Some think we spend too much money on neonatal intensive care and that we should spend more on prevention. Some think that all of neonatology is a vast medical experiment being conducted without the consent of the research subjects and without appropriate research methodology. Such debates and disagreements are necessary because neonatal care, like all health care, is a collective effort.
The medical care of critically ill newborns and the research to improve that care are collectively financed. The mechanisms for governance of this multidisciplinary enterprise are not straightforward. Decisions are made and policies adopted as a result of the collective pushing and pulling of multiple interest groups, hundreds of lobbies, thousands of micro-markets, and millions of people expressing needs or desires of one sort or another.
The answers that we have come to about decisions in the NICU were not in any way obvious at the start. The fundamental question at the center of all bioethical debate is a question of value. Which efforts are worth the economic and psychological cost? We have limited financial and moral and psychological and intellectual resources. How should we allocate them?
One way to understand the ways in which we’ve made such allocation choices is to look at alternative choices that were considered but not adopted in our effort to meet our moral obligations to critically ill babies. As an example, an alternative approach to our current approach might have been to fund more preventive prenatal care, rather than funding neonatal intensive care. Many people argued for this approach. Some studies suggested that better prenatal care would reduce the need for intensive care. Wilson and colleagues studied the costs of prematurity and concluded that, “…had all women with inadequate prenatal care received Medicaid-covered adequate prenatal care, expenditure for this care would yield more than a two to one return in savings in NICU costs.” [1]. Gorski and Colby came to similar conclusions, “For each additional $1 spent on prenatal care, $2.57 in medical care costs would be saved.” [2].