What differences make a difference?

Four years ago The Hastings Center initiated a “pluralism project.” That project gave the Center staff a chance to explore one swath of the theoretical literature concerning how members of democratic regimes ought to think about and respond to the differences among themselves. Much of that literature, produced by philosophers like Charles Taylor, Martha Nussbaum, and John Kekes, is wonderfully articulate about difference in general. But it is nearly silent about how particular categories of difference actually make a difference in the lives of particular individuals negotiating particular institutions. When we began our exploration of some of the theoretical issues, Barbara Koenig, Executive Director of the Stanford University Center for Biomedical Ethics, had already for some time been doing empirical research on the role ethnicity plays in end-of-life decisionmaking. In particular, she was studying the extent to which ethnicity made a difference for how people execute advance directives. Upon hearing about the Hastings Center’s pluralism project, Koenig invited several of us to California to talk with her and her colleagues about their research. Before arriving in California, I had a chance to read transcripts of interviews that Koenig and her team did with Chinese-speaking, Spanish-speaking, and English-speaking San Franciscans who were making end-of-life decisions. The first thing that struck me about those interviews now seems so obvious that I am astonished I hadn’t noticed it earlier: advance directives presuppose a very particular conception of the self, or what it means to be a person. The creators of these directives seem to presuppose, for example, that persons, even in the face of death, are and ought to be “rational,” that, even in the face of death, persons want to speak and hear the truth about their condition, and that persons largely want to make treatment decisions by and for themselves. The second thing that struck me was that not all of the Anglo patients seemed to have the sort of self that the inventors of advance directives had presupposed. They didn’t all seem to want to rationally and independently grapple with the truth of their impending demise. Moreover, not all of the “Chinese” and “Latino” patients seemed to possess the sort of self that those same inventors seemed to have in mind when they did speak about “others.” Some of these “others” did not seem, in the throes of emotion, to turn their decisions over to family members. Some of these “others” did not seem to want to leave the truth about their diagnoses unspoken. Not all of the Anglos were acting like Anglos and not all of the “others” were acting like “others.” In short, the transcripts from Koenig’s project suggested to me that the category of ethnicity was neither as transparent nor useful as I had imagined.