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Advocacy, Respect, Compassion, Empathy, Healing

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Advocacy, Respect, Compassion, Empathy, Healing Introduction Person-Focused Care – Advocacy, Respect, Compassion, Empathy, Healing Superstar Hollywood actress and director Angelina Jolie (1975–) made head- lines in May 2013 by announcing that after a positive test for a brca1 gene mutation and learning that she had a significant chance of contracting breast cancer, she had chosen to have a preventive double mastectomy and breast reconstruction. Jolie wrote confidently in the opinion pages of the New York Times that “there have been many advances in [breast reconstruction] in the last few years, and the results can be beautiful” (2013). Jolie was correct, and knowing that breast reconstruction, whether prosthetic or autologous, is a vi- able option can make some women more comfortable with undergoing cancer screening. For a woman as dependent on her appearance for professional suc- cess as Jolie to declare, “I feel empowered that I made a strong choice that in no way diminishes my femininity” can give women the courage to be tested and also, if needed, to take preventive measures (ibid.).1 Insurance companies in the United States long argued that breast recon- struction following mastectomy was a “cosmetic procedure” and “medically unnecessary,” thus not eligible for coverage. This changed with the Women’s Health and Cancer Rights Act (whcra) of 1998, and health plans that cover 1 The British Medical Journal reported a spike in brca testing after Jolie published her editorial but no accompanying spike in mastectomies, suggesting that women who had themselves tested after reading Jolie’s editorial had in fact “a lower probability of having the brca muta- tion than women tested before the editorial” (Desai et al. 2016). In The Body Papers: A Memoir (2019), Filipino-American writer Grace Talusan describes the difficult decision to have pre- ventive surgery after testing positive for the brca mutation. She also reveals the condescen- sion with which this decision is received in the Philippines, where a physician says to her, “What does your husband think of this mutilation? You should have waited … God has a plan.” Her response: “I did the right thing…. And as for my husband, he prefers me alive” (2019: 244). For a compelling family narrative on the changing options for women experiencing breast cancer over the twentieth century, see Janet Reibstein’s (1946–) Staying Alive: A Family Mem- oir (2002). Reibstein’s mother and aunts all died of breast cancer, while she had what she thought was a preventive mastectomy, but during the operation surgeons determined that she too had cancer. Reibstein speaks of the isolation and stigmas that her family members faced. She describes her Aunt Fannie, diagnosed in 1947, as submitting “to doctors, to the si- lence, to impotence as a woman and a patient because she had no choice” (2002: 35). See also Wegenstein for a list of writings and films on breast cancer (2016: 384). © koninklijke brill nv, leiden, ���� | doi:10.1163/97890044�018�_008 Karen Laura Thornber - 9789004420182 Downloaded from Brill.com09/29/2021 08:51:24PM via free access <UN> 200 Introduction mastectomies now also must cover reconstructive surgeries.2 Today, slightly more than half of women who receive mastectomies have breast reconstruc- tion (Breastcancer.org 2019). Many people believe breast reconstruction is a central part of cancer treatment; it is generally, if often erroneously, assumed to improve a woman’s quality of life and wellbeing (Clara Lee et al. 2009). But breast reconstruction, among those who can afford it, is not for every- one.3 Some women medically are not good candidates for the procedure and do not have a choice. And some women have no interest in it. Among other reasons, they fear a lengthy recovery following the procedure, particularly a procedure with a much higher risk for complications than the average elective surgery; recovery can be especially difficult for women who have had chemo- therapy or radiation. Having learned more about the likely outcomes of the procedure, including the fact that most women have no sensation in their new breasts and scarring can be significant, they have decided that this is not what they want. And having learned of the very small possibility of developing breast implant-associated anaplastic large-cell lymphoma, they do not want to take the risk. In some cases, they simply do not feel the need for breasts.4 2 As key sponsor of the bill, Senator Alfonse D’Amato (1937–) declared on the Senate floor on October 21, 1998: “Imagine the shock and horror of being told by your hmo that surgery fol- lowing the removal of your breast is cosmetic. That is outrageous.” Some women would of course agree with D’Amato, but not all, given that not all women believe breasts are an es- sential part of their bodies. D’Amato also reported that the medical director of an hmo with whom he had spoken had justified denying coverage because “replacement of a breast is not medically necessary … This is not a bodily function and therefore can not and should not be replaced” (Congressional Record 1998). 3 Many women in the United States still do not have health insurance, and the number is likely to increase. In addition, whcra does not apply to Medicare and Medicaid, although Medi- care covers breast reconstruction if a woman has had a mastectomy because of breast cancer, and Medicaid benefits vary by state. Moreover, insurance companies are not required to cover the procedure in full; they are required only to cover the same percent of it as they do other surgeries, including mastectomy (Cancer.org 2019). 4 As one woman describes the procedure, “You’re thrown into a world of wounds and drains and aspirating syringes that look like something you’d use to impregnate livestock. Tissue dies, incisions refuse to heal and your body can be racked by infections that can last for weeks, even months” (Mapes 2013). Many women report not being informed of possible complications, including loss of sen- sation. They reveal that their doctors promise them that their breasts will look better than ever but are vague about the potential side effects of the surgery. Most strikingly, unbe- knownst to many women with breast cancer, when surgeons reassure women that the new breast will “feel” like a natural breast, what they mean is that it will feel like a natural breast to the woman’s partner, not to the woman herself. As Memorial Sloan Kettering’s Dr. Andrea L. Pusic noted, “What it feels like to the woman has been a kind of blind spot in breast sur- gery. That’s the next frontier” (Rabin 2017a). One woman responding online to Rabin’s New Karen Laura Thornber - 9789004420182 Downloaded from Brill.com09/29/2021 08:51:24PM via free access <UN> Person-Focused Care 201 Nevertheless, these women often are under considerable pressure to have reconstructive surgery: pressure from loved ones, society, and health profes- sionals who assume having breasts is vital to a woman’s feeling “whole again” and who celebrate that women can “even go up a cup size” (Rabin 2016). Nearly forty years ago, African American lesbian feminist writer Audre Geraldine Lorde articulated in The Cancer Journals (1980) her anger at society’s failure to recognize women’s importance beyond their appearance: To imply to a woman that yes, she can be the “same” as before surgery, with the skillful application of a little puff of lambswool, and/or silicone gel, is to place an emphasis upon prosthesis which encourages her not to deal with herself as physical and emotionally real…. This emphasis upon the cosmetic after surgery re-enforces this society’s stereotype of women, that we are only what we look or appear, so this is the only aspect we need to address…. With quick cosmetic reassurance, we are told that our feelings are not important, our appearance is all, the sum total of self. (1980: 57–58) Lorde likewise decried how society denied women autonomy over their own bodies. Returning to her breast surgeon ten days after her mastectomy, Lorde was told by a disapproving nurse that the office would prefer if she wore a pros- thesis, not only because it would make her feel better but also that her failure to do so was “bad for the morale of the office.” This request outraged Lorde, who remarked, “this would be only the first such assault on my right to define and to claim my own body” (60). She also asked why it was that Israeli military leader and politician Moishe Dayan (1915–1981) could address parliament and appear on television with “an eyepatch over his empty eyesocket [and] nobody tells him to go get a glass eye, or that he is bad for the morale of the office,” but she is stigmatized for failing to hide her surgery (60). York Times article “After Mastectomies, an Unexpected Blow: Numb New Breasts” (2017) speaks of having a similar experience with her hysterectomy and demands that physicians “LISTEN to patients. CARE for us.” Interestingly, other online letters criticize women for not doing adequate research before the procedure, one remarking “I do have to wonder how a person undergoes this type of surgery without doing any research.” Many women do their research, but for countless others the trauma of the breast cancer diagnosis is so overwhelm- ing that it stands in the way of proceeding deliberately. Ultimately, the responsibility for in- forming a person of the possible risks lies with the physician, and many physicians do take this responsibility seriously. For more on breast implant-associated anaplastic large-cell lym- phoma, about which very few physicians have heard until recently, see Grady (2017).
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