In late 2006 I began to think seriously about the potential clinical and administrative challenges for my hospital should the predictions about an impending influenza pandemic turn out to be accurate. This brought me front and center up against the many problems associated with scarce-resource rationing. I was then fortunate to be asked to serve on a multi-disciplinary statewide task force on pandemic flu convened by the North Carolina Institute of Medicine, an organization created and funded by the state legislature to investigate and issue reports on a wide assortment of health-related topics of concern to the people of the state. These reports could contain a range of policy, regulatory, and statutory recommendations to the legislature and governor. This group brought me into contact with a large number of professionals (and only a couple of ethicists) from a wide variety of professions and areas of expertise, and truly expanded my intellectual and social horizons. Ensconced in both the academy and clinic as I am, I had never before had the opportunity to meet and interact with representatives of professions as diverse as the nuclear energy and power industry, emergency services (including state and local law enforcement), banking, and county public health officials, to name but a few. It was a significant eye-opener and demonstrated the broad array of stakeholders with their parochial interests that wanted to have a seat at the table in any discussion and debate on what should happen. All had their unique viewpoints about how rationing could affect their constituencies. We were fortunate that reasonable discussion and compromise were made the order of the day and we were able to agree on almost all topics, even the especially difficult ones that could potentially involve significant sacrifices for some. Everyone knew the stakes involved and that "grown-up" behavior was expected, that decisions and concrete recommendations were called for, and that all could not get everything they may have wanted.
The report was issued in the spring of 2007 and was comprehensive but contained significant gaps, especially in the area of clinical decision making. The latter task was remanded to the ethics committee of the North Carolina Medical Society by the state health director under the aegis of the governor's office. Our mandate was to develop a detailed algorithm for the rationing of intensive-care resources that could be coordinated throughout the state. In essence, we were asked to create a standard of care in which rationing would be explicit as the norm for medical decision making and the allocation of critical resources. Not surprisingly, this was a major clinical and ethical challenge, but after much discussion and gnashing of teeth a document describing our recommendations was crafted and sent to the governor. There it sat unpublicized and even unopened as far as I know. Perhaps this was not unexpected considering the contents, which included very specific flowcharts on how to allocate scarce beds and ventilators. The document also provided other guidelines on removing patients from life support if they did not improve in a specified amount of time, so as to free machines and supplies for what was anticipated to be an overwhelming number of desperately ill patients. This last part, along with the list of preexisting conditions that would preclude access to ICU care (like advanced cancer, severe dementia, New York Heart Association Class 4 heart disease, etc.), was the most controversial and potentially inflammatory. But the predicted severe pandemic never occurred and so our need to use this plan was unmet. But my interest in rationing was piqued.
This experience made me acutely aware of what could happen with necessary draconian rationing with finite supplies of a given resource, something that occurs every day with organ transplants and potentially with shortages of drugs. But what is most fascinating about these real-life examples, and what could have been the case with pandemic influenza (hopefully we will never know, although pandemics do occur every thirty to forty years or so), is that the fractious, libertarian-inclining, fiercely independent American public accepts what has to be done as a matter of course, even when the consequences of not receiving a medical resource can be death. And, as the North Carolina Institute of Medicine Task Force showed, a group of forty or so individuals with widely disparate backgrounds, interests, constituencies, and goals could come together to discuss what needed to be done and reach a consensus without rancor. Why should the rationing of dollars and the healthcare they can buy be all that different?
Few would disagree with the conclusion that the healthcare system in the United States is a mess. Even with the phasing in of the provisions and benefits of the Affordable Care Act, many millions will still lack health insurance (although the number should be significantly decreased from the unconscionable level it is today), and chances are slim that it will contribute substantively to stabilizing or even lowering the incredible amount per capita that we spend on healthcare. With the looming retirement and aging of the baby boomers leading to a massive influx of Medicare recipients, all demanding what they feel is their rightful benefit, it is probable that unless something drastic is done to rein in healthcare costs, these costs will continue to spiral out of control. Of course that means that this part of our GDP will drain resources from other needs that are also demanding to be met such as education, infrastructure, and the like. The only recourse is rationing in some form. We must limit what is available or what can be had.
But the very word rationing evokes fear and engenders visions of "death panels," or the dreaded socialized medicine with big-government bureaucrats rather than doctors and their patients making medical decisions. Or people think about long lines and waiting months to get a hip replaced or a coronary bypass operation as they envision to be the case in Canada and England (it is closer to the truth in the latter country). But that is wrong. It is certainly correct to state that under some conditions of rationing—which I describe in detail in chapter 2 of this book—there is no question that the decisions about the allocation of finitely scarce medical resources are the consensus outcome of committees consisting of both healthcare professionals and laypeople, and that people can wait a long time for a kidney or a heart transplant and most never receive one. But that is only one side of the rationing coin. I argue that in a liberal, wealthy, and culturally diverse democracy like the United States, rationing can only be done in a manner that is both generous and fair so that virtually no one would have to do without what they need and that the availability of healthcare interventions would be both abundant and more easily accessible than it can ever be today. Hence, rationing does not have to be a four-letter word; indeed, rationing is what people would sensibly and rationally choose.
This book would not have been possible but for the help and generosity of a number of people. I would first like to thank Tony Hope of Oxford University, who, during many fruitful discussions while were both resident fellows at the Brocher Foundation in Hermance, Switzerland, encouraged me to embark on a book-writing venture; Alex Rosenberg of Duke's Philosophy Department, for his constant encouragement; Kevin Sowers, who, first as the chief executive officer and now as president of Duke University Hospital, has supported my career both financially and with enthusiasm for what I have tried to do; Peter Ubel and Gopal Sreenivasan, for extremely useful critiques of my ideas; Elizabeth Delong from Duke's Department of Biostatics and Bioinformatics, for her suggestions about continuous variables; Mark Leary of Duke's Department of Psychology and Brain Sciences, for directing me to the studies on "scarcity effects"; and my many colleagues on the Duke University Hospital Ethics Committee, who have been exceedingly gracious and understanding as I have tried out some of my arguments in this book. I also owe a large debt of gratitude to the anonymous reviewers for the MIT Press, whose criticisms and suggestions have improved and honed my thinking about these issues and led to a significantly improved final product. I had the good fortune to have Elizabeth Judd assigned to me as my copy editor. There is no question that the book has benefited immeasurably by her relentless (but always thoughtful, magnanimous, and helpful) cuts and suggestions. My acknowledgments would not be complete without recognizing the contribution of my dog, Sara, whose many long walks with me gave me numerous quiet hours during which most of the ideas discussed in this book were both born and nurtured. Finally, I would like to thank my wife, Dona Chikaraishi, whose patience and encouragement have enabled me to finish this work.

Series Foreword ix

Preface xi

1 The "Evil" of Healthcare Rationing 1

2 Existing Rationing Systems: Organ Transplantation, Scarce Drugs, and Oregon 35

3 Fairness 61

4 The Cutoff Problem, or Where and How to Draw the Line 93

5 Losers 129

6 Limits to Fairness in a Democracy 157

7 Summing Up 185

Notes 221

References 267

Index 307

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