Book Review

End-of-Life Decision Making: A Cross-National Study

N Engl J Med 2006; 354:1654April 13, 2006

Article

End-of-Life Decision Making: A Cross-National Study
(Basic Bioethics.) Edited by Robert H. Blank and Janna C. Merrick. 266 pp. Cambridge, Mass., MIT Press, 2005. $32. ISBN: 0-262-02574-4

Death has become a worthy subject of study only late in the development of modern medicine. Until the 1970s, dying was considered to be mainly a private issue, embedded in specific social, cultural, and religious contexts. End-of-life decision making is now an essential part of medical practice, since medicine has turned many previously lethal diseases into chronic diseases, has the capacity to relieve the suffering of terminal illness, and faces completely new ethical arenas, such as those associated with brain death and organ transplantation. At the same time, well-informed citizens want to be involved, both in their individual end-of-life decisions and in public policy regarding these issues.

Until now, medical and public debate on these subjects was limited to rich countries with widespread availability of modern medical care. But there are good reasons to take a much wider perspective by looking at countries with a low per capita gross domestic product (GDP). In these countries, advanced medical care generally is available only to small groups within the population — a situation that often creates a serious confrontation with established convictions and practices around death and dying. Many of these countries are also confronted with large health problems, such as AIDS, that entail end-of-life issues. And a comparison of practices that are rooted in a wide range of social, cultural, and religious contexts tends to enlighten the ethical debate.

Opening up a wide perspective is precisely what Blank and Merrick have done in this book. They invited ethics and policy experts from 12 countries to give an overview of end-of-life policies within each of the countries, to analyze which country-specific factors influence these policies, and to describe how terminally ill patients are treated by the respective health care systems. In order to maximize comparability, they gave the authors a framework consisting of 12 topics, including a number of quantitative issues. The countries selected were Brazil, China, Germany, India, Israel, Japan, Kenya, the Netherlands, Taiwan, Turkey, the United Kingdom, and the United States — nations that represent extremes not only in per capita GDP (the United States vs. Kenya and India) and the directly related topics of infant mortality and life expectancy, but also in population size (China vs. Israel). At least as important is that the countries represent a wide range of religions and philosophies of life: Buddhism, Christianity, Confucianism, Daoism, Hinduism, Islam, Jainism, Judaism, Shintoism, and Sikhism.

The results make for fascinating reading for both experts and nonexperts. Inevitably, the contributions vary in quality and scope, and the envisaged quantitative information remains thin. But the book illustrates convincingly that culture, religion, and social structure will remain the primary determinants of the choices that people and societies make with respect to end-of-life issues. There is no single concept of, or pathway toward, a good death, and views on the role of medicine and the choices of patients — for instance, to refuse life-sustaining treatment — differ widely. Understandably, the legal and ethical regulation of end-of-life decision making is in very different stages and follows different pathways in these 12 countries. At the same time, the book makes clear that the large inequalities in health care between (and within) the countries limit the relevance of a discussion of medicine's contribution to the quality of dying. What the book certainly also makes clear is how international comparative bioethics can illuminate matters of life and death.

Paul J. van der Maas, M.D., Ph.D.
Erasmus University Medical Center, 3000 CA Rotterdam, the Netherlands