Health Policy in Dystopia

In the past several decades dystopian literature and film have emphasized the dangers posed to individuals and societies by new developments in biomedical technology, including, for example, genetic engineering, cloning, organ transplantation, and increasingly sophisticated machine-human interfaces. In this essay I wish to focus on a related but different aspect of medical dystopian imagining. Rather than societies that have been deformed by the use—or misuse—of advanced medical technologies, the works of speculative fiction I will discuss imagine future dystopias defined by issues of health care access, distribution, and funding: defined, that is, by questions of policy or what might also be thought of as the political economy of health care. Who gets quality medical care, and who doesn’t? How, and by whom, is health care provided? How and by whom is it paid for? Who has the power to make these decisions? The political economy of health care might seem an inherently less sexy topic—and hence one less likely to capture writers’ and filmmakers’ imaginations—than the often-disturbing implications of headline grabbing advances on the biomedical frontier. But the works I consider here confront these policy-wonk questions of health care distribution and funding in startlingly dramatic ways and, in doing so, bring out their radical importance to any future we might seek to imagine.

In writing this essay, I hope to suggest that we who study intersections of literature and medicine should devote more sustained attention to literary engagements with health care as a system: a complex, often fragmented set of financial models, institutions, government policies, and personnel whose roles range well beyond patient and care provider. As readers of this journal know well, patients, health practitioners, and narrative theorists have increasingly recognized the power of narrative in clinical settings—stories told and closely attended to—to promote healing and relief. Narrative medicine has been gradually gaining a place in the training of doctors and other health professionals as educators come to see the value in helping future practitioners learn to read patient stories, whether conveyed verbally or in other modes, using some of the same skills cultivated in literary studies. So too, narrative’s integral role in grappling with questions of medical and bioethics has made it an important tool for teaching and a fruitful area of study.

Narrative also comes into play in the often abstruse realms of health policy and health economics when, for instance, politicians and other stakeholders use anecdotal stories about individual people or families, often with heavily sentimental overtones, to give force to their advocacy for or against a given government program. Former Massachusetts lawmaker John E. McDonough has noted that, at their best, such anecdotal accounts can play a positive role in the policy-making process. Stories “bring to life drab data analyses” and thus help voters and policy makers alike “visualize” not only current problems but also “opportunities for change.”¹ The “Narrative Matters” section of the journal Health Affairs, introduced in 1999, demonstrates on a monthly basis the power that well-crafted personal narratives, more specifically what the journal calls “policy narratives,” can have in helping us grasp the human implications of how different components of our health care system work—or, as the stories frequently reveal, in key respects fail to work. In addition, numerous book-length memoirs about illness and its treatment offer rich reflections, both explicit and implicit, on the institutional, economic, and political structures that shape the health care experience in the United States. In each of these modes of policy narrative, however—anecdotal stories used in political contexts, the more fleshed-out personal essays published in Health Affairs, book-length memoirs centered on illness—a great deal of the narrative’s authority and potential impact reside in its presumed factual status, rhetorically reinforced by the ethos of first-person testimony: I was there; I saw this happen; this happened to me (or to my sister, my mother, my child). McDonough affirms that, to do good work “in the policy environment . . . a story needs to be true and presented in a context that does not distort its relevance to the...