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The View from Stage IV: Personal Stories in the Public Square

To get an idea of just how challenging physician-patient communications can be in practice, read Amy Berman’s remarkable blog posting about her recent diagnosis with Stage IV inflammatory breast cancer, a rare and aggressive form of cancer that involves the skin and lymphatic system of the breast. Berman, whom I know through our mutual work on health care ethics and policy, writes about the experience of seeking a second opinion after receiving her diagnosis.

The first oncologist had explained that the standard protocol for treating inflammatory breast cancer applied to patients with localized disease and that a different, nonsurgical approach would be appropriate for a patient who, like Berman, had distant mets. The second oncologist told her that “all of my patients” get the full protocol. He was perplexed when Berman asked him to clarify why she should undergo treatments that could not cure her, would add significant burdens to her remaining life, or both. So, why do the surgery? “Well, you don’t want to look at the cancer, do you?”

Berman analyzes her experience in terms of her lifelong – and continuing – work, as a nurse, researcher, and grant maker, to improve health care for older Americans. If it was this difficult for a well-informed, cognitively intact health care professional to clarify her treatment options, convey her preferences, and refuse a treatment that she did not want, are we surprised that so many seriously ill or frail older Americans wind up in situations that they don’t want?

Others who live with different types of Stage IV cancer have written about their encounters with cancer care systems, and also about what this particular encounter with one’s mortality is like. In her essay, “Hit by Lightning,” Washington Post reporter Marjorie Williams described her life after diagnosis with Stage IV liver cancer as a “regular existence” – family, work, dinner parties, car payments – that had to absorb the rigors of ongoing treatment, and the psychological burden of being “cursed by my specific awareness of the guillotine poised above my neck,” at times resenting those – including the imagined readers of her essay – who “may never even catch sight of the blade assigned to you.” An excerpt from her essay is archived on the NPR Web site.

Another woman who aimed to show what Stage IV cancer looks like when it is part, but not the whole, of everyday life was Julia Boltin, a printer and graphic designer in New York’s Hudson Valley. After recovering from extensive breast surgery, she collaborated with a photographer to document the impact of past and continuing treatment on her body.

For a symposium at Smith College at which she lectured on this project, she also designed the poster. It features an image that shows her back and right arm. Her point was that you can see breast cancer there, too, if you know where to look, if you know how multiple surgeries and courses of radiation can affect the functioning of the arm, the muscles and skin of the torso, the life of the person whose body this is.

Boltin told the Smith students – many future physicians among them – that this project had a personal as well as a public goal, to help her answer two questions for herself: What sense can I make out of suffering? And how do I suffer but not be a victim? For Julia Boltin, as for Amy Berman and Marjorie Williams, the answer lay in getting on with one’s work. Her poster is archived here.

Nancy Berlinger is a research scholar at The Hastings Center.

Published on: February 7, 2011
Published in: Health and Health Care

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