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asked to generate numbers on clinical conditions using time trade-off or standard gamble methods that we described in chapter 5. Dolan criticizes this strategy since healthy people, as we have previously discussed, can’t accurately imagine life with a medical condition they have never experienced. The Nobel laureate Daniel Kahneman likened QALY measurements to the attempts by nineteenth-century physicists to measure the viscosity of the “ether” in the universe, an ether that did not exist. Despite such serious criticisms, numerous experts in the public and private sectors are now proposing QALYs to guide expenditures as part of American health care reform.

Surrogates find guidance in the ethical principles of autonomy, beneficence, and nonmaleficence. We believe that further insight may be gained by considering the vocabulary that reflects the mind-sets of the many patients we spoke with: believers and doubters; maximalists and minimalists; a naturalism orientation or a technology orientation.

For example, Dr. Veysman is a believer, a maximalist, with a technology orientation; he believes that modern medicine can succeed even against long odds. Omar and his doctors were of the same mind-set; they were also maximalists and believers in science and technology; they didn’t view as futile the many intensive measures needed to keep Omar alive before and through his liver transplant. Ayesha as the surrogate “representing Omar” also adopted this mind-set. Other incapacitated patients may have taken a different approach to their health during their lives, as doubters or minimalists or with a naturalism orientation.

By considering the patient’s life story, surrogates and physicians can separate their own mind-sets from the patient’s. This way, they can better choose for the patient who can’t decide for himself.

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Conclusion

Every patient carries her or his own doctor inside.

—ALBERT SCHWEITZER

If medicine were an exact science, like mathematics, there would be one correct answer for each problem. Your preferences about treatment would be irrelevant to what is “right.” But medicine is an uncertain science.

Studies and statistics can tell us that one or two in a group of one hundred women like Susan Powell with high cholesterol will have a heart attack. But which ones ? Similarly, we can’t identify with certainty the one or two women out of three hundred who will benefit by taking a statin drug. Even genetic information like BRCA testing provides only an estimate of cancer risk. No one can say which women will develop breast cancer and when. Nor can we say with certainty what impact atrial fibrillation or prostate cancer or any other condition will have on an individual’s life or how someone will experience the side effects from a particular treatment. Each of us is unique in the interplay of genetic makeup and environment. The path to maintaining or regaining health is not the same for everyone.

Choices made in this gray zone are frequently not simple or obvious. For that reason, medicine involves nuanced and personalized decision making by both the patient and the doctor.

This essential truth is often overlooked by experts who seek to standardize treatments rather than customize them to the individual. Although presented as scientific, formulas that reduce the experience of illness to numbers are flawed and artificial. Yet insurers and government officials are pressuring physicians and hospitals to standardize care using such formulas. Policy planners and even some doctors have declared that the art of medicine is passé, that care should be delivered in an industrialized fashion with doctors and nurses following operating manuals. They contend that doctors and patients can’t be relied upon to decide what is best. While they insist that their aim is “patient-centered care,” in fact it is “system-centered care.”

Recently, we heard from a colleague at another hospital that an administrator sits in the clinic and times how long it takes for a patient to move from the