- Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease
Uncertain Suffering examines the plight of patients with sickle cell disease using the insights of cultural anthropology. Carolyn Moxley Rouse spent many years getting to know adolescents with sickle cell and studying the practitioners and institutions that provide their medical care. She combines this field work with an analysis of the general problem of racial disparities in health and health care in the United States. Uncertain Suffering demonstrates the tight linkage between racial disparities and certain fundamental inadequacies in medical care for sickle cell disease. The book delivers a compelling account of the interrelatedness of these two injustices.
In the most affecting sections of the book, Rouse characterizes the many challenges that face people with sickle cell. She develops multiple, [End Page 436] parallel stories of individual experience that expose the uncertainties and inconsistencies of medical care for this chronic illness.
Rouse also asks tough questions about racial health disparities, wanting to know, for example, whether greater attention to medical care promises to advance social justice or to distract from it. Rouse shows that the sources and forms of racism within health care are often invisible at the level of individual experience. However, she argues equally that the resulting racial disparities are quite visible, appearing as themes and evidence in the accounts of both providers and patients. Rouse bypasses an easy appeal to universal principles of justice and equality that lacks some connection to the local contexts of patients, institutions, and providers. She acknowledges Paul Farmer's contention that health care is a uniquely promising site for social action, with its strong appeal to our basic sense of justice (17). However, the benefits of such an appeal apparently remained little evident in the daily struggles of patients suffering from sickle cell disease within the labyrinth of the American healthcare system.
Uncertain Suffering asks some effort from its readers. Rouse organizes the first half, entitled "The Questions," into topically defined chapters. One by one, she takes on theoretical problems relating to therapeutic efficacy, pain, prognostic uncertainty, and access to health care. The arguments move rapidly through evidence from health policy to social philosophy to medical science and population statistics. The individual accounts of patients appear in segments, interlaced through the topical chapters. One finishes a tour through these questions having gained a multi-dimensional perspective on this important and difficult patch of the social landscape. However, the reader will at times yearn for a closer look at the map that Rouse has followed.
The second half of Uncertain Suffering offers responses to the problems identified in the first half. There are, of course, no easy answers at hand, although some of Rouse's suggestions stand out as compelling and practical. The book's various suggestions for policy reform would amount to a radical overhaul of the system, but without any sense of the path to get from here to there. The suggestions regarding the micro-politics of clinical medicine are more concrete. Rouse proposes reforms that are helpful and original. She notes, for example, that medicine typically promotes cultural competence as a skill required for health-care providers. It is the patients, however, Rouse argues, who most need a related sort of skill. In fact, the physicians in Rouse's account who emerge in the best light demonstrate little overt interest in the "culture" of their patients. They combine humane attentiveness with technical adeptness and a dedication to their work. Rouse proposes that a form of training in cultural [End Page 437] competence would be more valuable to the patients. Patients with a better understanding of the culture of biomedicine and armed with "information about medical uncertainty, practitioner personality issues, and institutional politics," will ultimately fare better (173). People with chronic illnesses often learn the nuances of medical and institutional culture gradually through experience and necessity. However, a working knowledge of the foibles and folkways of the medical system—as well as its strengths and formal structures...