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Illness Narratives Guide Choices for Overly Aggressive Health Treatments

January 10, 2008

Nancy Wong and Tracey King set out to investigate a boggling health phenomenon: American women are choosing overly aggressive treatments for breast cancer. 

In 1990, a consensus recommendation from the National Institutes of Health said that the treatment of choice for early breast cancer was lumpectomy plus radiation. Despite this recommendation, the United States has the highest rate of mastectomy surgery among industrialized countries.

Even though 82 percent of physicians recommended the lumpectomy plus radiation solution to those diagnosed with early stage breast cancer, only 74 percent of women chose this option. These women chose a more severe form of treatment when an easier treatment would have been adequate.

With a series of in-depth interviews, Wong and King discovered that health decisions in the United States are influenced by restitution narratives which reflect culturally structured values toward illness and emphasize elements such as survival and control.

Early stage breast cancer is more easily detected due to technology advances and accounts for nearly 20 percent of all breast cancer cases. Research has shown that women’s understandings of breast cancer are heavily influenced by their desire to maintain appearances and be vigilant about detection.

Wong and King explain, “The burden of personal responsibility is so ingrained that women often feel that they are to blame for not detecting the disease earlier or for having failed to pursue the most aggressive treatment.

Furthermore, despite widespread information dissemination and requirements for physicians to discuss breast cancer treatments, women still do not translate this information into accurate risk assessments regarding their treatment options. Instead, they rely on stories of survivorship and restitution in constructing their risk understandings.”

This is clearly reflected in the healthcare consumption in America. Over-consumption is such an issue that publications are beginning to raise concerns about “runaway spending on medical treatments.”

Illness narratives, in the minds of Wong and King, are the only way to offset these biases that the most serious forms of treatment are necessary. Wong and King write, “Illness narratives allow us to convey, express, and formulate our experiences of illness and suffering, thus providing a platform for shared cultural experiences.” These narratives are what need to be understood to change the way society thinks about treatment issues. 




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