Guest Editorial What Differences Make a Difference? ERIK PARENS Four years ago The Hastings Center ini- tiated a “pluralism project.” That project gave the Center staff a chance to ex- plore one swath of the theoretical liter- ature concerning how members of democratic regimes ought to think about and respond to the differences among themselves. Much of that literature, pro- duced by philosophers like Charles Tay- lor, Martha Nussbaum, and John Kekes, is wonderfully articulate about differ- ence in general. But it is nearly silent about how particular categories of dif- ference actually make a difference in the lives of particular individuals negotiat- ing particular institutions. When we began our exploration of some of the theoretical issues, Barbara Koenig, Executive Director of the Stan- ford University Center for Biomedical Ethics, had already for some time been doing empirical research on the role ethnicity plays in end-of-life decision- making. In particular, she was study- ing 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 Cali- fornia to talk with her and her col- leagues 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 ear- lier: 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 pre- suppose, 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. More- over, not all of the “Chinese” and “La- tino” 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 unspo- ken. Not all of the Anglos were act- ing 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 cat- egory of ethnicity was neither as trans- parent nor useful as I had imagined. Cambridge Quarterly of Healthcare Ethics (1998), 7,1–6. Printed in the USA. Copyright © 1998 Cambridge University Press 0963-1801/98 $9.00 + .10 1 https://www.cambridge.org/core/product/0A8C6D4958FEA30CD229B8FA4DAC934C Downloaded from https://www.cambridge.org/core . IP address: 54.191.40.80, on 14 Jul 2017 at 09:35:44, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms .