Complicating the Story

Both articles in this issue of the Hastings Center Report try to complicate the standard view of how health care decisions are made at the end of life. In that view, health care decisions rest on one of two values. Patient self-determination is much the most important value, and we try to bring as many decisions under it as possible. Ideally, the patient expresses his preferences directly, in response to questions, but if that's not possible, then we allow that the patient may express preferences indirectly, by indicating earlier in his life what he wants or would want done in the situation that has now arisen. If there is no indication of what the patient wants, then self-determination gives out, and somebody else must make the decision on the basis of what appears to be in the patient's best interest.

In the lead article, philosopher Daniel Brudney argues that self-determination cannot do nearly as much work as the standard view supposes. If the patient is not able to say directly, in person, what he wants, then it is rare that self-determination can be the basis for the decision. (Very rare, cautions Rebecca Dresser, in the editorial on the opposite page.) Brudney argues that many of the decisions that on the standard model are viewed as special instances of patient self-determination are actually based on a third value, which he calls "authenticity." Whenever we rely on our sense of what a patient would have wanted, then patient authenticity is the paramount value. Alternatively, we may rely on our sense of the patient's best interests, and indeed, best interests is probably more important than the standard view allows, since if the decision is not made directly by the patient, then best interests is not competing with self-determination, which is valued very highly, but only against patient authenticity.

In the second article, the legal scholar Robert Burt argues that even when the patient can express preferences directly, decision-making should be much more complex than the standard model allows. As Burt describes it, the standard model is dyadic: there is the physician, telling the patient what the medical choices are, and the patient, telling the physician what he wants. But this model distorts health care decisions (and potentially health care policy); other people need to be invited into the decision-making, bringing with them values other than that of unrestrained self-determination. In Susan Sontag's case, her own wild hopes of cure—unleavened by the cautions her son or her physicians might have expressed, had they been allowed to voice their views about what was in her best interests—drove her to make decisions that were deeply injurious to herself as well as to her son, whose role was only to look on and confirm Sontag's decisions.

In short, Brudney introduces more values, and Burt introduces both more values and more people. Neither calls for throwing out self-determination, though; they complicate the picture, but they both still put the patient's own decision-making front and center. Perhaps the take-home point, at least from Burt, is that self-determination should never mean that one is by oneself. Others should be nearby, offering their views and their help. Elsewhere in this issue, Franklin Miller offers a moving study of this kind of patient decision-making in an essay about his sister's decision to end her life a few years after an accident that paralyzed her from the neck down. It is, as Miller says, "an autonomy story." But it's not a story about a patient left to think things out alone.