Over the past five years, medical aid-in-dying (also known as assisted suicide) has expanded rapidly in the United States and is now legally available to one in five Americans. This growing social and political movement heralds the possibility of a new era of choice in dying. Yet very little is publicly known about how medical aid-in-dying laws affect ordinary citizens once they are put into practice. Sociological studies of new health policies have repeatedly demonstrated that the realities often fall short of advocacy visions, raising questions about how much choice and control aid-in-dying actually affords. Scripting Death chronicles two years of ethnographic research documenting the implementation of Vermont’s 2013 Patient Choice and Control at End of Life Act. Author Mara Buchbinder weaves together stories collected from patients, caregivers, health care providers, activists, and legislators to illustrate how they navigate aid-in-dying as a new medical frontier in the aftermath of legalization. Scripting Death explains how medical aid-in-dying works, what motivates people to pursue it, and ultimately, why upholding the “right to die” is very different from ensuring access to this life-ending procedure. This unprecedented, in-depth account uses the case of assisted death as an entry point into ongoing cultural conversations about the changing landscape of death and dying in the United States.
Phenomenological approaches to pain have flourished in recent years because pain has been cast as a private experience that shatters language and evades representation. And yet, despite the obvious constraints on apprehending another’s internal states, language is what translates pain from the solitary and unknowable to a phenomenon that is richly described in literature, medicine, and everyday life. Drawing on 18 months of ethnographic fieldwork in a multidisciplinary pediatric pain clinic, All in Your Head: Making Sense of Pediatric Pain builds on phenomenological accounts but situates pain within an intersubjective context to emphasize the relational, everyday means through which chronic pain is understood and managed. Through careful attention to the language of pain—including narratives, conversations, models, and metaphors—and detailed analysis of how pain sufferers make meaning through interactions with others, the book reveals that however private pain may be, making sense of it is profoundly social.
Saving Babies? The Consequences of Newborn Genetic Screening (co-authored by Stefan Timmermans), examines the recent expansion and standardization of state-mandated newborn screening programs in the US. The book draws on three years of ethnographic research in a California metabolic-genetics clinic to describe how parents and geneticists together resolve multiple diagnostic, prognostic, and epistemic uncertainties associated with the introduction of new screening technologies. We argue that, contrary to the position of vociferous advocacy groups, newborn screening cannot on its own save lives. Many other factors must be in place for the putative “benefits” of newborn screening to be realized, and these benefits come with a host of unanticipated consequences—such as deeply ambiguous results and inadequate access to treatment—that have received far too little attention from policymakers. Therefore, newborn screening exemplifies the unsettling paradox of investment in high-tech medicine while ignoring the provision of more basic healthcare needs.
Amidst ongoing debate about health care reform, the need for informed analyses of U.S. health policy is greater than ever. The twelve original essays in Understanding Health Inequalities and Justice: New Conversations Across the Disciplines (co-edited with Michele Rivkin-Fish and Rebecca L. Walker) show that common public debates bypass complex ethical, sociocultural, historical, and political questions about how we should address ideals of justice and equality in health care. Integrating perspectives from the humanities, social sciences, medicine, and public health, the contributors illuminate the relationships between justice and health inequalities to complicate and enrich debates often dominated by simplistic narratives. From addressing patient agency in an inequitable health care environment to examining how scholars of social justice and health care amass evidence, this volume combines the skills and sensibilities of diverse scholars to promote a richer understanding of health and justice and the successful paths to their realization.
The extensively updated and revised third edition of the bestselling Social Medicine Reader provides a survey of the challenging issues facing today's health care providers, patients, and caregivers by bringing together moving narratives of illness, commentaries by physicians, debates about complex medical cases, and conceptually and empirically based writings by scholars in medicine, the social sciences, and the humanities. The Reader is essential reading for all medical students, physicians, and health care providers.
Volume 1, Ethics and Cultures of Biomedicine, examines the roles and training of professionals alongside the broader cultures of biomedicine; health care; experiences and decisions regarding death, dying, and struggling to live; and particular manifestations of injustice in the broader health system.
Volume 2, Differences and Inequalities, explores social and cultural influences on the meanings of health, illness, and disease; social factors in the development of biomedical knowledge and systems of care; and structural explanations for why some social groups experience disproportionate burdens of disease and differences in treatment.