The Public Context of Private Medical Decisions

Abstract

Normative standards powerfully affect the course of our lives. They guide our everyday behavior--how we drive, how we teach our students, how we respond to strangers and intimates. Our expectations about others rely on these standards as well. We assume the actions of people we encounter will fall within a range of appropriate conduct. So much do we take this for granted that we notice it only in the rare instances when our expectations are in error, or when we visit another community or country where the standards are different. In our country, standards of normative conduct permit wider variation than at other times and in other places. We are a pluralistic and diverse nation, and our standards must accommodate this. On many fronts, contemporary U.S. society is struggling to achieve the level of unity and agreement necessary to maintain effective normative standards without unduly suppressing the variety of cultures and individulas that constitute this nation. Normative standards generally operate as unspoken, implicit forces shaping the individual's private thoughts and action. They typically enter the public realm when a perceived breach becomes the subject of informal social sanctions, civil or criminal legal proceedings, media attention, legislative or political activity, or public opinion polls. The standards are constructed at both levels, however. Public pronouncements delineating the standards influence private ideas on the boundaries of acceptable behavior; in turn, private views determine what juries, judges, voters, poll participants, and other players publicly label beyond the pale. Though by no means problem free, the significant strength of normative standards is their connection to real people negotiating the challenges and responsibilities of everyday life. After the fundamental moral prohibitions are set, normative standards delineate which of the remaining actions should be permitted as reasonable, and which are unacceptably deviant. For a variety of reasons, we have devoted insufficient attention to delineating the normative standards governing administration of life-sustaining treatment. For the most part, the courts, legislatures, and other entities setting policy in this area have sought to minimize public involvement and maximize private discretion in treatment decisionmaking. Accordingly, they speak of the right to privacy, the right to determine without external interference whether to accept the burdens of modern medicine in exchange for a chance at obtaining its benefits. When they do engage in normative standard setting, they disavow this function, claiming instead to ground their decisions in patients' individual preferences. But the goal of keeping quality of life, resource allocation, and other relevant value choices completely at the private level is ill-suited to the contemporary health care environment. …