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John von Neumann and Oskar Morgenstern (Theory of Games and Economic Behavior, 2nd ed. [Princeton, NJ: Princeton University Press, 1947]) presented a normative model with rational decision making based on a set of axioms. The model was influenced by game theory and posited a so-called rational actor who applies Bernoulli’s formula for maximizing expected utility. Traditional decision analysis in medicine provides a series of decision trees to structure the choice, with defined probabilities for each outcome and patient values, typically using the methods of time trade-off or standard gamble. See Stephen G. Pauker, Jerome P. Kassirer, “Decision analysis,” NEJM 316 (1987), pp. 250–258; Gary Naglie et al., “Primer on medical decision analysis: Estimating probabilities and utilities,” Medical Decision Making 136 (1997), pp. 136–141; Thomas Goetz, The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine (New York: Rodale Books, 2010).

149 We have discussed in detail the complexity of forecasting in chapters 3 and 5. Please see endnotes for detailed references. A lively and engaging popular book by an expert in the field is Daniel Gilbert’s Stumbling on Happiness (New York: Vintage Books, 2007). Gilbert concludes: “Yes, we should make choices by multiplying probabilities and utilities, but how can we possibly do this if we can’t estimate those utilities beforehand? The same objective circumstances give rise to a remarkably wide variety of subjective experiences, and thus it is very difficult to predict our subjective experiences from foreknowledge of our objective circumstances. . . . The simple lawful relationships that bind numbers to numbers and words to words do not bind objective events to emotional experiences.”

CHAPTER 8: END OF LIFE

153 President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, “Deciding to forgo life-sustaining treatment,” Library of Congress card number 83-600503, March 1983; this report can be accessed via http://bioethics.georgetown.edu/pcbe/reports/past_commissions/deciding_to_forgo_tx.pdf.

154 Cancer of the biliary tract is often incurable, and survival is measured in months to years. Occasionally there are dramatic remissions, like the one that Mary Quinn experienced. See Jerome Groopman, The Anatomy of Hope: How People Prevail in the Face of Illness (New York: Random House, 2004), for a similar narrative of a physician who faced choices after a diagnosis of biliary cancer.

157 The SUPPORT study is found in SUPPORT Principal Investigators, “A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT),” JAMA 274 (1995), pp. 1591–1598.

158 The finding that advance directives in the SUPPORT study were not consistently informative is Christina M. Puchalski et al., “Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP,” Journal of the American Geriatrics Society 48 (2000), pp. S84—S90. The research from Dr. Terri Fried of Yale University on how preference is changing: Terri R. Fried et al., “Inconsistency over time in the preferences of older persons with advanced illness for life-sustaining treatment,” Journal of the American Geriatrics Society 55 (2007), pp. 1007–1014. Also see Terri R. Fried et al., “Prospective study of health status preferences and changes in preferences over time in older adults,” Archives of Internal Medicine 166 (2006), pp. 890–895. The article by Dr. Rebecca Sudore with Dr. Fried is found in Rebecca L. Sudore, Terri R. Fried, “Redefining the ‘planning’ in advance care planning: Preparing for end-of-life decision making,” Ann Intern Med 153 (2010), pp. 256–261. Also see Rebecca L. Sudore, Dean Schillinger, Sara J, Knight, Terri R. Fried, “Uncertainty about advance care planning treatment preferences among diverse older adults,” Journal of Health Communication 15 (Suppl. 2) (2010), pp. 159–171.

159 The commentary