Real-life Bioethics

My academic training is in philosophy, and I tend to see the problems in bioethics as philosophical problems. And so they often are. What are moral values? What is the nature of rationality? These are certainly philosophical problems. But at the same time, they are not strictly philosophical problems, insofar as they are not the special purview of the field of philosophy. They require a broader treatment, and that broader treatment might even lead us to believe that the standard philosophical treatment is unsatisfactory.

In one way or another, several items in this issue of the Hastings Center Report raise questions about the standard philosophical answers to issues in bioethics. The challenge is most explicit in Barry Hoffmaster’s article, “The Rationality and Morality of Dying Children.” Hoffmaster launches a frontal assault on the typical philosophical understanding of ethics, applied ethics, and bioethics. “There is more rationality in our lives than there is in our philosophy,” he begins. The usual take in philosophy on rationality “hides the real nature and extent of the rationality and the morality in our lives because it denigrates, if not ignores, our experience and our creativity.” Closer attention to our experience is therefore needed, and Hoffmaster tries to take a step in that direction by considering anthropological research on how children dying of leukemia learned about their condition and then dealt with that knowledge.

The lead article, by Tony Hope and three coauthors, questions standard philosophical approaches to decision-making in a different way. Hope and his colleagues consider whether the concept of authenticity is useful for exploring how patients with anorexia nervosa understand their condition and deal with that knowledge. Further, they ask, if the concept is important for people with anorexia, should it be important for clinicians, who sometimes need to make decisions on behalf of those women? Arguably, they explain, “in respecting autonomy, it is the authentic wishes that should be respected. This would be to give the idea of authenticity a role analogous to that of capacity (competence).”

Hope and colleagues are skeptical that “authenticity” can help others make decisions on behalf of women with anorexia nervosa. There is no good way of deciding which decisions would count as “authentic.” But thinking about how to make decisions is not the full extent of bioethics. As the essay by Rebecca Dresser emphasizes, attempting to understand the patient’s experience of illness is another and important part of bioethics, even though bioethicists themselves do not always see it that way. “At times,” writes Dresser, “work in our field conveys the impression that seriously ill patients and their families would be in good shape if clinicians would only do things like give patients the proper information, respect patients’ choices, and follow advance directives.” Just as Hope and colleagues argued for attending more closely to the concept of authenticity, Dresser argues for attending to concepts like dignity, mortality, and grief. These concepts “may be difficult to incorporate into bioethical analysis, but they are the sorts of concerns that matter to people dealing with serious illness.”

A bioethics that dealt better with them would still be a philosophical bioethics, but certainly not just a bioethics of philosophy. It would be what Dresser calls a “real-life bioethics.” —GEK [End Page 2]