After the Genome: A Language for Our Biotechnological Future

11. Technologies of the Self at the End of Life: Pastoral Power and the Rhetoric of Advance Care Planning

193 Lisa Keränen technoloGies of the self At the end of life Pastoral Power and the Rhetoric of Advance Care Planning 11 introduction: “tAkinG responsiBility for deAth” Following the Patient Self-Determination Act (PSDA) of 1990, health care providers and advocacy groups stepped up their efforts to persuade Americans to specify their end-of-life treatment preferences through advance health care plans before the onset of incapacitating illness.1 nearly thirty years later, in the midst of a protracted debate about his proposed health care legislation, Barack Obama became the first U.S. president to publicly endorse advance health care plans as “sensible” in a tele-address before the American Association of Retired Persons.2 “i actually think it’s a good idea to have a living will,” he assured his audience, “i’d encourage everybody to get one.”3 More recently, when the Supreme Court was considering arguments about the constitutionality of President Obama’s controversial health care plan, Never Say Die author Susan Jacoby published a New York Times op-ed, “Taking Responsibility for Death,” in which she lamented the number of Americans who lack clear advance directives regarding their wishes for medical care at the end of life. “[E]nd-of-life planning is one of the few actions within the power of individuals who wish to help themselves and their society,” she opined: “too few Americans are shouldering this responsibility .”4 President Obama’s and Susan Jacoby’s arguments in favor of adopting advance directives mirror widely circulating public claims that advance care planning documents help health care professionals and family members to honor a patient’s wishes at the end of life.5 Even in the face of persistent criticism about the utility of advance directives, advocacy groups extensively endorse their use.6 194 g After the Genome i begin this chapter with Obama’s and Jacoby’s statements in favor of advance care planning because i seek to turn our attention to the intersections of technology, religion, ethics, and death in the evolving rhetoric of end-of-life planning. More specifically, i want to explore what advance care planning rhetoric reveals about how we are asked to understand ourselves as biomedical subjects at the beginning of the twenty-first century. Although advance care plans such as living wills and the ubiquitous Five Wishes document promise patients a degree of control over their end-of-life care, their implementation offers less command than suggested.7 Moreover, despite significant debates about their bioethical and practical entailments, the rhetorical operations of advance directives remain underscrutinized.8 in an era when a sizable proportion of Americans can expect to die within the walls of health care institutions following decisions to limit medical intervention, considering the rhetoric of advance care plans allows us to investigate how technological developments prompt new language and subjectivities, which in turn raise their own sets of ethical and practical concerns.9 This chapter draws from Michel Foucault’s concept of pastoral power to consider the interplay between patient advance care documents and medical or physician orders for life-sustaining treatment (MOST/POLST). interweaving rhetorical analysis of leading advance care planning documents with broader discourse about the forms, this chapter argues that advance care plans represent a novel form of pastoral power concerned with the salvation of self through planning for a “good death.”10 Here, techniques of self-inspection/disclosure, individualization, and “responsibilization” direct subjects to specify how they want to leave this world, to choose which technologies they will allow in life’s final hours, thus making death planning —and communication about the preferred terms of such death planning —a routine technology of the self.11 For Foucault, processes of pastoral power—and indeed all forms of power—ultimately comprise questions of subjectivity. “All of these present struggles,” he tells us “revolve around the question: Who are we?”12 This chapter takes up this question, “Who are we?” by exploring what the evolving rhetoric of advance care planning suggests about how subjects are configured within the context of twenty-firstcentury biotechnological advancement. By considering the rhetorical operations of end-of-life rhetorical forms in shaping health and medical subjectivities, this chapter contributes to three scholarly conversations. First, for rhetorical critics of biomedical and health texts, it adds to a growing literature that assesses the persuasive dimensions of the rhetorical forms that are evolving to meet the challenges technoloGies of the...