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Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease

Carolyn Moxley Rouse
Copyright Date: 2009
Edition: 1
Pages: 328
https://www.jstor.org/stable/10.1525/j.ctt1ppm06
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  • Book Info
    Uncertain Suffering
    Book Description:

    On average, black Americans are sicker and die earlier than white Americans.Uncertain Sufferingprovides a richly nuanced examination of what this fact means for health care in the United States through the lens of sickle cell anemia, a disease that primarily affects blacks. In a wide ranging analysis that moves from individual patient cases to the compassionate yet distanced professionalism of health care specialists to the level of national policy, Carolyn Moxley Rouse uncovers the cultural assumptions that shape the quality and delivery of care for sickle cell patients. She reveals a clinical world fraught with uncertainties over how to treat black patients given resource limitations and ambivalence. Her book is a compelling look at the ways in which the politics of racism, attitudes toward pain and suffering, and the reliance on charity for healthcare services for the underclass can create disparities in the U.S. Instead of burdening hospitals and clinics with the task of ameliorating these disparities, Rouse argues that resources should be redirected to community-based health programs that reduce daily forms of physical and mental suffering.

    eISBN: 978-0-520-94504-3
    Subjects: Anthropology

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Preface
    (pp. ix-xii)
  4. Acknowledgments
    (pp. xiii-xiv)
  5. Introduction
    (pp. 1-22)

    During my first visit to Children’s Hospital East (CHE), a pediatric teaching hospital located in an urban center in the Northeast, there were no visual surprises. I had just spent three years conducting fieldwork at Children’s Hospital West (CHW) and had become accustomed to everything from the alternating commercial linoleum and broadloom, ultraperformance carpet (in a style named “Traffic”) to the young cancer patients hooked up to several intravenous drips, pushed on gurneys or in wheelchairs, who clarify the hospital’s moral purpose. Inside CHE, colorful murals and playful structures welcome families in the main entrance while large pictures of smiling...

  6. PART I The Questions

    • CHAPTER 1 Race and Uncertainty
      (pp. 24-44)

      Sickle-shaped hemoglobin can block blood flow to capillaries, essentially starving organs of oxygen. In addition to producing tremendous pain, repeated vascular occlusions often cause irreparable organ damage. Because of the association between pain and mobility, treating pain quickly and aggressively is considered by many hematologists to be a necessary standard of care. In an effort to authorize national treatment standards, a group of physicians working with the National Institutes of Health (NIH) published a monograph entitledThe Management of Sickle Cell Disease. This document distills data from the latest scientific studies in order to present an evidence-based approach to sickle...

    • CHAPTER 2 Sickle Cell Disease in the Clinic
      (pp. 45-68)

      In the fall of 1999, while conducting field research at Children’s Hospital West, I visited a sickle cell teen support group. The meeting took place in the bowels of the hospital, where medical professionals, patients, and families meet to digest the suffering occurring on the floors above. We sat around the conference table. The nondescript room decorated in different shades of characterless beige easily contained our party of ten. Included in the group was an articulate, handsome, light-skinned fourteen-year-old boy whose discomfort was measured by his constant shifting in his chair and scanning of the room. Another participant was an...

    • CHAPTER 3 Health Care Access and Medical Uncertainty
      (pp. 69-88)

      How do Max and LaTasha’s physicians know if their patients are receiving equitable health care? Even among people with the same disease, what constitutes a legitimate basis for determining health care equity? LaTasha’s specific physical and psychosocial issues are different from Sydney’s or Jamal’s, and from those of the cancer patients who occupy the same floor. Physicians do not treat abstract patients, represented in the statistical literature in terms of sample size and probability; they treat individuals. To make sure that his sickle cell patients receive quality care, Dr. Allen, the head of the CHW sickle cell team, has operationalized...

    • CHAPTER 4 The Affective Dimensions of Pain
      (pp. 89-104)

      In Gananath Obeyesekere’s investigation of the emergence of three karmic eschatologies, he notes that for Buddhists there is a “logical contradiction in the explanation of suffering” that cannot be reconciled.1 Notably, is suffering the result of the inherent weaknesses of the gods, or is karma less deterministic than thought? Obeyesekere represents these tensions not as dialectics but as aporias that threaten the integrity of the doctrine. The response to this contradiction has been for authorities of Buddhism to authorize discourses regarding the structural and agentive entities responsible for suffering, namely, karma or the gods. Within American medicine there is a...

    • CHAPTER 5 Uncertain Efficacy
      (pp. 105-122)

      Within medicine, treatment success is couched as efficacy, and efficacy can be articulated a number of ways. For example, doctors can focus on short-term rather than long-term success, or they can prize more medical intervention and a longer life over less medical intervention and a shorter life. InAmerican Medicine: The Quest for Competence, Mary- Jo Good reflects on the discourses of efficacy embedded in standards of care. She describes the movements in the 1980s, within the medical community, to manage risk and reduce malpractice lawsuits. Far from being purely rational and scientific, medical standards of care are steeped in...

    • CHAPTER 6 Uncertain Suffering
      (pp. 123-148)

      Stepping outside of entrenched narratives of suffering and social responsibility, as philosopher Friedrich Nietzsche (1844–1900) did, is radical and threatening. For disease advocacy groups, including the sickle cell disease community, withholding pity for patients is considered heartless and unscrupulous. Besides placing a social burden on the spectators of suffering, standard narratives of suffering offer patients a way to identify with their disease, and help determine the objects to be studied and treated. On the other hand, they also harden our gaze and limit our ability to recognize the diverse and complex origins of suffering. Unequal Treatment, for example, does...

  7. PART II Reforming the System

    • CHAPTER 7 Finding a Way Out of Doxa: Anthropology of the Imagination
      (pp. 150-167)

      To my frustration, after more than two hundred hours of observation and interviews in two different pediatric hospitals in California, the causes for health care disparities remained elusive. Race or racism played a part, but how much remained unclear. Medical uncertainty compounded by racialized discourses appeared to be a significant factor, but, again, trying to determine a pattern seemed impossible given that every case was unique and anecdotal. Over time I discovered that many of my presumptions about the intersection of race and health were simply wrong.

      One assumption I had before entering the field, an assumption strongly supported by...

    • CHAPTER 8 Adolescent Transitioning: Acculturating Patients to the Culture of Medicine
      (pp. 168-192)

      In a sylvan corner of a rural northeastern town, doctors, nurses, and various hospital staff members prepared for the arrival of campers to Camp Freedom. About 120 young campers and 30 adolescent junior counselors with sickle cell disease traveled from the inner city to rehearse adult independence. For five days children between the ages of seven and fourteen were freed from having to explain sickle cell disease to their peers—freed from explaining what a sickle cell crisis feels like, why daily folic acid is important, or why swimming can be one of the most painful summer activities. About 24...

    • CHAPTER 9 Thought Experiment: What Does It Mean to Save a Life?
      (pp. 193-221)

      The quality of health care is based in large part on the imagination and on the culture of hope.¹ But although in the United States hope is generally associated with good things, the culture of hope in medicine can be monolithic and hegemonic. As a result, discourses of hope in medicine have the capacity to drown out other perspectives about what constitutes health and well-being. For example, anthropologist Lesley Sharp describes the ways in which the social imperative to save innocent lives has led to risky medical experimentation: “Transplantation in the United States is driven by a strong professional ethos...

    • CHAPTER 10 Rethinking Suffering: Community-Based Health Care, Alternative Medicine, and Faith
      (pp. 222-256)

      When medicine was becoming professionalized in the nineteenth century, African American nurses and physicians made very explicit connections between medical access, social justice, and black redemption. At the time, disparities with respect to health care access were marked by Jim Crow. Hospitals, medical schools, and doctors’ offices were typically segregated, and resource-poor black institutions provided diminished quality of care. Blacks would have to confront these racial barriers or continue to suffer the effects of unequal treatment. Since the 1960s, civil rights legislation, which protects blacks from institutional racism, and affirmative action, which created a stronger black middle class, mask the...

  8. Conclusion
    (pp. 257-268)

    During my fieldwork, I observed many incidents that threw a complicated light on a very distressing problem, but the problem with relying on stories to understand health care inequities is that they are anecdotal and therefore easily dismissed. While I could instead build my story about health care disparities using statistics, as done successfully inUnequal Treatment, the same statistics can be narrated to tell very different stories.¹ For example, the first draft of the “National Healthcare Disparities Report,” issued in December 2003 by the Department of Health and Human Services, opened: “The overall health of Americans has improved dramatically...

  9. Notes
    (pp. 269-282)
  10. References
    (pp. 283-302)
  11. Index
    (pp. 303-314)