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guiding framework for surrogate decision making in bioethics and law, because it protects the principle of patient autonomy. However, considerable research indicates that even when surrogates have had prior discussions with a patient about his or her preferences or have the patient’s advance directive in writing, they often fail to choose the option that corresponds to the patient’s wishes. In an analysis of more than a dozen studies constituting nearly twenty-six hundred surrogate-patient pairs presented with hypothetical scenarios that required them to make choices about treatment, the surrogate failed to correctly predict the patient’s preferences a third of the time. Further complicating the surrogates’ task is the fact that patients’ preferences aren’t fixed, so what the patient would actually choose in the future is hard to predict.

Dr. Alexia M. Torke, a prominent researcher in geriatrics and medical ethics at the Regenstrief Institute and the Indiana University Center for Aging Research in Indianapolis, wrote about substituted judgment, “Since the theoretical framework for surrogate decision making was developed, research has shown that the concept of substituted judgment rests upon false assumptions and is unable to meet the standard goals of maintaining patient autonomy.”

A second principle may be invoked when the patient can’t make his or her own decisions: “beneficence.” This principle dictates that doctors and other medical personnel have the obligation to act in the patient’s own “best legitimate interests.” While the principles of patient autonomy and beneficence may coincide, there are times when what a patient said she wanted in an advance directive or what family surrogates imagine she would want clashes with what the treating doctors believe is in her best interests. In such cases, the courts and the majority of ethicists have concluded that autonomy trumps beneficence.

Yet a study done by Dr. Torke and colleagues reveals that physicians often do not make the wishes of the patient or the surrogate their top priority when formulating decisions about care. In a survey of 281 physicians, although nearly three-quarters of doctors endorsed patient preferences as the most important ethical standard for surrogate decision making, only 30 percent said patient preference was the primary factor in their most recent real-world decision. While these doctors considered the principle of autonomy, they more frequently ranked as most important what they viewed was in the best interests of the patient—the principle of beneficence. Even when the patients had prepared advance directives or living wills, these doctors viewed patient preference as the key factor in their decisions less than half the time.

Torke offered several possible explanations for these findings. As we noted in the previous chapter, advance directives or prior conversations with the patient about care may not apply to the clinical situation at hand. In addition, although physicians are taught that autonomy should be given priority in patient and surrogate decision making, they may perceive that acting in the patient’s best interests is at least equally important; many doctors feel a sense of duty to determine and promote the patient’s best interests. Furthermore, Torke wondered whether physicians may make “global assessments” that include both best interests and patient preferences.

As the need for a transplant became ever more urgent, Ayesha pressed Omar to give her guidance about her role in treatment decisions, since she would be his surrogate.

“I want you to do anything that the doctors say is acceptable,” Omar stated.

Ayesha promised she would.

Omar had developed a sense of trust and confidence in his transplantation team. He believed that this team of doctors and nurses would be focused on him, that his best interests were at the forefront of their thinking. Despite his extensive research into the technical aspects of liver transplantation, Omar had decided that for him, the principle of autonomy could be secondary to the principle of