Children, Families, and Health Care Decision Making

Children, Families, and Health Care Decision Making

Children, Families, and Health Care Decision Making

Children, Families, and Health Care Decision Making


ISSUES IN BIOMEDICAL ETHICS General Editors: John Harris, University of Manchester; S(ren Holm, University of Copenhagen. Consulting Editor: Ranaan Gillon, Director, Imperial College Health Service, London. North American Consulting Editor: Bonnie Steinbock, Professor of Philosophy, SUNY, Albany. The late twentieth century has witnessed dramatic technological developments in biomedical science and the delivery of health care, and these developments have brought with them important social changes. All too often ethical analysis has lagged behind these changes. The purpose of this series is to provide lively, up-to-date, and authoritative studies for the increasingly large and diverse readership concerned with issues in biomedical ethics--not just health care trainees and professionals, but also social scientists, philosophers, lawyers, social workers, and legislators. The series will feature both single-author and multi-author books, short and accessible enough to be widely read, each of them focused on an issue of outstanding current importance and interest. Philosophers, doctors, and lawyers from several countries already feature among the contributors to the series. It promises to become the leading channel for the best original work in this burgeoning field. this book: Lainie Friedman Ross presents an original and controversial examination of the moral principles that guide parents in making health care decisions for their children, and the role of children in the decision-making process. She opposes the current movement to increase child autonomy, in favour of respect for family autonomy. She argues that children should be included in the decision-making process but that parents should be responsible for their children's health care even after the children have achieved some threshold level of competency. The first half of the book presents and defends a model of decision-making for children's health care; the second half shows how it works in various practical contexts, considering children as research subjects and as patients, organ donorship, and issues relating to adolescent sexuality. Implementation of Ross's model would result in significant changes in what informed consent allows and requires for paediatric health care decisions. This is the first systematic medical ethics book that focuses specifically on children's health care. It has important things to say to health care providers who work with children, as well as to ethicists and public policy analysts.


My purpose in writing this book is to examine how decisions should be made for children, with a focus primarily on health care decisions. I argue that in a liberal society, decisions about a child's health care should be made by his or her parents. In order for parents to make health care decisions for their child, they must balance the child's health needs, his or her needs for other primary goods, and the needs and interests of other family members. To make these decisions in a way that reflects their values and beliefs, parents need wide latitude. I reject the present 'best interest of the child' standard in favour of a standard that allows parents more flexibility. I propose a standard that is based on the principle of respect for persons modified to accommodate the child's developing personhood.

In the first half of this book, I propose a decision-making model for children that emphasizes parental autonomy constrained by respect for the child's developing personhood. I call this model 'constrained parental autonomy'. In the second half, I show how this model works in various health care settings.

2. Background: The Child, the Family, and the Liberal State

Liberalism is a political theory of limited government which provides institutional guarantees of personal liberties and basic rights for its adult members. Adults are free to devise and implement their own life plans. This includes the freedom to form and raise a family according to their own conception of the good. Less clear-cut is how liberalism deals with children.

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