Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease (review)

In Uncertain Suffering, anthropologist Carolyn Rouse digs beneath the surface of sickle disease care among African Americans to interpret the cultural barriers to overcoming racial health care disparities in the United States. Since the 1960s, Americans have found disparities in health outcomes among different racial and ethnic groups to be objectionable—an affront to our nation's democratic ideal of equal opportunity. Unfortunately, persistent concern about health disparities among conscientious Americans has not entailed obvious progress. There are even recent life expectancy data to suggest that the United States was "substantially closer to racial equality in 1945 than it was by the end of the century" (p. 109). Generally speaking, American medicine and society have routinely treated the suffering of black patients in isolation from the conditions that allow racial inequality to persist; and Americans have been misled into thinking that the best solutions to racial health care disparities lie solely in better medical services for minority populations and improved "cultural competence" among health professionals. Uncertain Suffering effectively busts this vital myth while simultaneously acknowledging that special attention for minority health has led to substantial, albeit suboptimal progress in the treatment of sickle cell disease.

Americans—even in their impulse to care about injustice in racial health care disparities—have not focused adequately on the actual problem of suffering among black patients. Uncertain Suffering illustrates this fact by addressing how quality-of-life issues have been handled in the American sickle cell disease community (inclusive of patients, families, medical professionals, local associations, and advocates). Quality of life, unlike life expectancy, is notoriously difficult to measure; it does not lend itself easily to statistical analysis because it requires grappling with the problems of individual as well as collective suffering. Rouse interrogates the depth of this problem by detailing how American medicine manages the pain and suffering of sickle cell patients in both the best and worst circumstances. Her fine-grained ethnography reveals that sickle cell management is infused with persistent uncertainty about suffering, efficacy, and access to medical services that belies existing efforts to address racial disparities in health care. With good reason, Rouse concludes that it is not enough for well-meaning Americans to care about racial health disparities or for medical professionals to promote understanding of "black culture" in their handling of minority populations; such forms of caring, she argues, fall dangerously short of true compassion because they frequently fail to acknowledge the persistent uncertainty of individual suffering. Rouse also observes that efforts to help people with sickle cell disease have been hijacked by a uniquely American brand of "the politics of pity," making her argument most provocative where it employs Hannah Arendt's distinction between compassion and pity to channel a Nietzschean suspicion of charity and do-gooders (p. 137).

Uncertain Suffering is best where it exemplifies how American medicine and society have proven to be both well intentioned in their handling of racial health disparities and shortsighted in addressing what those disparities actually mean in cultural and personal terms. Even as her book focuses on interpreting the cultural barriers to progress in the sickle cell community, Rouse stresses that racial gaps in health outcomes cannot be remedied apart from broader endeavors to overcome higher rates of poverty, incarceration, and functional illiteracy among African Americans. She is rightly skeptical of efforts to utilize our health care system as a principal mechanism for producing social justice, and she effectively explains the problems with treating evidence-based medicine as the default remedy for disparities in health care outcomes. Drawing on her seven years of intensive ethnographic study of the American sickle cell disease community, Rouse has produced case studies that clarify why evidence-based medicine is necessary to the task of managing sickle cell disease yet ill equipped to handle the uncertain suffering among...