From The New England Journal of Medicine
In 1985, Norman Daniels published Just Health Care, which articulated the first useful, nonutilitarian ethical principle for distributing health care resources. Daniels claimed that health care was important because it helped to ensure "normal human functioning," which in turn enhances people's opportunities to pursue their life plans. In Daniels's view, a just health care system tries "to make sure that individuals maintain normal functioning, where possible" -- an ethically valuable way to ensure equality of opportunity. Although Daniels's fair-opportunity principle was an important advance, it became clear that it had problems. First, it appeared to justify the provision of almost all available health care services, since almost everything physicians can do is aimed at maintaining normal functioning and enhancing people's opportunities. In this sense, it hardly seemed to be a way to set priorities; rather, it seemed to be a way to justify doing nearly everything medically possible. To his credit, Daniels was among the most perceptive critics of his own principle and identified other limitations, such as its inadequacy for helping to determine whether priority should be given to lifesaving interventions for a few patients or to services that improve the quality of life for many. In this new book, Daniels and James E. Sabin offer another approach. They argue that in Western democracies, there is no agreement on substantive principles for the distribution of health care services. Consequently, the challenge is to define the conditions under which it is ethically acceptable for institutions to set limits on health care. They propose four conditions, collectively termed "accountability for reasonableness": first, publicity (decisions to limit health care and their rationales must be publicly accessible); second, relevance (the rationales invoked must be based on evidence, reasons, and principles that fair-minded persons would affirm); third, appeals (mechanisms for challenging allocation decisions must exist); and fourth, regulation (public procedures must ensure the fulfillment of these three conditions). Daniels and Sabin believe that requiring the use of public, explicit decisions "will improve the quality of decisions making" and will improve public confidence that decisions are made for ethical and not self-interested reasons. Daniels and Sabin devote the second half of their book to studies of how accountability for reasonableness works in the real world. They examine approaches to last-chance therapies, ways in which various managed-care organizations have confronted lung-volume-reduction surgery, and the problems of pharmacy benefit design. One conclusion of Setting Limits Fairly is that, because of limited resources and nonmedical priorities, justice does not entitle people to all effective medical services. Another is that justice does not entitle every person to the same set of medical services. Different health care plans might well come to different determinations, for example, about whether to cover the cost of an artificial heart or the latest migraine medication. Consequently, one person might be entitled to an artificial heart, but his or her neighbor might not be. Yet if the plans' procedures for determining these distributions fulfill the conditions of accountability for reasonableness, both determinations might be ethical. People are entitled not to the same set of services but, rather, to determinations made through fair procedures. Daniels and Sabin note that agreement on substantive principles for allocating medical resources is unlikely; defining fair procedures for priority setting should be the goal. What is at issue is whether accountability for reasonableness is the right approach. In my opinion, this approach is too passive. Powerful health care institutions make the decisions and provide the reasons, and persons subjected to the decisions merely have the right of appeal. There are, however, avenues for influencing the distribution of resources, such as participation in debates about funding priorities, communication with political representatives, and formation of political associations to lobby and advocate. Fair procedures require the empowerment of those who must live with the medical services that are covered. To augment Daniels and Sabin's four principles, we need at least three additional principles: first, fair consideration (there must be mechanisms to assess and incorporate every person's interests and preferences); second, empowerment (there must be mechanisms for persons to influence decision makers and to participate in the decision-making process); and third, impartiality (those formulating and implementing decisions about resource allocation should not have a conflict of interest). In the next decade, every country will face very hard choices about how to allocate scarce medical resources. There is no consensus about what substantive principles should be used to establish priorities for allocations. Instead, we will need fair procedures. Debate will focus on what those procedures should be. Daniels and Sabin's accountability for reasonableness and illuminating case studies will be invaluable in furthering that debate.
Ezekiel J. Emanuel, M.D., Ph.D.Copyright © 2002 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.
Review
"In the next decade, every country will face very hard choices about how to allocate scarce medical resources. There is no consensus about what substative principles should be used to establish priorities for allocations. Instead, we will need fair procedures. Debate will focus on what those procedures should be. Daniels and Sabin's accountability for reasonableness and illuminating case studies will be invaluable in furthering that debate."--the New England Journal of Medicine, Ezekiel J. Emanuel, M.D., Ph.D.
"...keeps the reader engaged and helps the understanding of the criteria."--Doody's
"...offers a detailed procedural approach to limit setting where primarily the question of legitimacy is settled."--Nursing Ethics