Health care ethics and health law in the Dutch discussion on end-of-life decisions: a historical analysis of the dynamics and development of both disciplines

Abstract

Over the past three or four decades, the concept of medical ethics has changed from a limited set of standards to a broad field of debate and research. We define medical ethics as an arena of moral issues in medicine, rather than a specific discipline. This paper examines how the disciplines of health care ethics and health care law have developed and operated within this arena. Our framework highlights the aspects of jurisdiction (Abbott) and the assignment of responsibilities (Gusfield). This theoretical framework prompted us to study definitions and changing responsibilities in order to describe the development and interaction of health care ethics and health law. We have opted for the context of the Dutch debate about end-of-life decisions as a relevant case study. We argue that the specific Dutch definition of euthanasia as ‘intentionally taking the life of another person by a physician, upon that person’s request’ can be seen as the result of the complex jurisdictional process. This illustrates the more general conclusion that the Dutch debate on end-of-life decisions and the development of the two disciplines must be understood in terms of mutual interaction.

Introduction

Within the span of just a few decades we have seen dramatic change in the way moral issues in medicine are regarded and addressed. Up until the 1960s, medical ethics remained largely a matter of professional moral codes; today medical ethics has been swallowed up by bioethics, a new and broad field of societal debate engaging lawyers, ethicists, theologians, social workers and others. The “veto” on bioethical matters is now the shared professional property of many disciplines. How did this transformation take place and what are its implications for the way bioethical problems are framed and resolved?

In an effort to explore this change, most analysts have looked at the social context and cultural meaning of medical ethics (Weisz, 1990, De Vries, 1995, De Vries and Subedi, 1998); they have studied why and how medical ethics developed and became bioethics (Rothman, 1991, Jonson, 1998). For example, in his analysis of experiments with humans and the development of medical ethics, Rothman focuses on the social context of the transformation of medical ethics. He posits that in The United States—a society concerned with ‘underdogs’—we would expect special interest in the rights of research subjects to emerge. Rothman goes on to show how the concern with medical experiments involving human beings served to attract many ‘outsiders’ to the field of medical research, including jurists and ethicists.

In contrast to Rothman and other similar studies, we study bioethics as a developing field of several disciplines, in this case health care ethics and health law. We explore the relation between these two disciplines as they develop rather than between disciplines and society. We consider bioethics as an arena of actors from different disciplines who create boundaries between ‘good’ and ‘bad’. In particular we are interested in the way the interaction between the many disciplines of bioethics has shaped both the field and the way moral problems come to be defined. Our focus is on health care ethicists and health lawyers in the Netherlands. Using the Dutch euthanasia debate as a case study,² we look at how these two disciplines/professions managed their competing claims of competence and show how a particular moral issue interacts with the development of professions within bioethics.

The transformation from physician control of normative problems to shared control of these problems by the professions of bioethics can be understood as a contest over jurisdictional boundaries between professions. Abbott’s model for a comparative and historical study of relations between professions presupposes that jurisdictional boundaries between professions are perpetually in dispute (Abbott, 1988). The concept of jurisdiction—defined as the link between an occupation and its work—is an instrument to analyse professions as functioning in an interdependent system. Since one profession can pre-empt another’s work, the histories of professions are inevitably interdependent.