Life in the Field of Pediatric Cancer Treatment By

The Promise of Poison: Life in the Field of Pediatric Cancer Treatment by Anthony Gerard Wright A dissertation submitted in partial satisfaction of the requirements for the degree of Joint Doctor of Philosophy with University of California, San Francisco in Medical Anthropology in the Graduate Division of the University of California, Berkeley Committee in Charge Professor Nancy Scheper-Hughes, Co-chair Professor Seth Holmes, Co-chair Professor Charles Briggs Professor Patricia Baquedano-López Summer 2019 © Anthony Gerard Wright Abstract The Promise of Poison: Life in the Field of Pediatric Cancer Treatment by Anthony Gerard Wright Joint Doctor of Philosophy in Medical Anthropology University of California, Berkeley University of California, San Francisco Professor Nancy Scheper-Hughes, Co-chair Professor Seth Holmes, Co-chair The Promise of Poison: Life in the Field of Pediatric Cancer Treatment is an exploration of the ideologically mediated practices through which people are made into different kinds of participants in processes of pediatric cancer treatment. Since the 1950s, the field of pediatric cancer treatment in the United States has become organized around a multidisciplinary model that the oncologist Sidney Farber dubbed “total care.” In recognition of the various forms of havoc that cancer diagnosis and treatment wreaks on patients and their intimate networks, Farber’s vision calls for multidisciplinary teams of biomedical and psychosocial professionals to provide various caregiving services to both patients and their family members, particularly parents/guardians. Since the time of Farber, many cancer treatment centers throughout the world have adopted some version of his model. In this dissertation, I explore practices of total care at Bay Area Children’s Hospital, which is the site of a major pediatric cancer treatment center in the San Francisco Bay Area. In doing so, I show how models of pediatric cancer care intersect with models of communication and youth in ways that can produce multivalent effects that range from therapeutic to iatrogenic. As young people and their families become positioned as participants in the field of pediatric cancer treatment, their lives become spatially, temporally, and ideologically re-arranged around the demands of particular cancer treatment protocols. In the process, they are not only promised the possibility of healing, but they are also warned about the negative, or iatrogenic, effects of treatment. While the negative effects of biomedical cancer treatment practices are commonly recognized, here I show how psychosocial caregiving practices can also produce harmful effects. One common way in which this occurs is via the subjection of individuals who identify as teenagers to habitats, artifacts, standards, and practices that were designed to facilitate care and communication between adults and young children. Such forms of subjection can enact processes of infantilization, alienation, and stigmatization that inhibit therapeutic interactions. As I will show, the processes that constitute total care are also mediated by ideologies of race, class, and gender that inflect models of care, communication, and youth. Patients and families who inhabit non-white and non-bourgeois identities may be particularly likely to experience the negative effects of total care insofar as it reproduces standards that derive from white, Euro-American, bourgeois ideologies that mark them as “inappropriate” people. 1 For those who left too soon. i ’Tis a fearful thing to love what death can touch. A fearful thing to love, to hope, to dream, to be – to be, And oh, to lose. A thing for fools, this, And a holy thing, a holy thing to love. For your life has lived in me, your laugh once lifted me, your word was gift to me. To remember this brings painful joy. ’Tis a human thing, love, a holy thing, to love what death has touched. -Yehuda HaLevi ii Acknowledgments Although this dissertation bears my name as the sole author, the stories and voices of many people are stitched into these pages. Above all, I am grateful to the families and young people who allowed me into their lives. Their suffering and loss were immense, but so were their love, compassion, and humor. As in most ethnographic accounts, I had little choice but to cloak real people in pseudonyms. Although some of these people have tragically passed away, the love that others feel for them lives on. I hope that this account conveys the depth of that love. In addition to the families and patients who I met through this work, I am extremely grateful to the many professionals who opened their workplace up to me, trained me as a hospital volunteer, allowed me to observe their activities, and took time out of their incredibly hectic schedules to participate in interviews. Although I take a critical stance toward certain professional practices and institutional structures, I hope it is clear how greatly I respect many of the individuals who carry out the work of cancer care. In addition to being brilliant people with stunning knowledge of a dreadful disease, I found most professionals to be passionately devoted to their work and to the families they serve. This dissertation grew out of six years spent as a graduate student in medical anthropology at the University of California, Berkeley and San Francisco, and I am forever grateful to all of the mentors and colleagues I met along the way. I would like to thank my dissertation co-chairs, Nancy Scheper-Hughes and Seth Holmes, for all of their support, encouragement, and wisdom. I am also grateful to Charles Briggs and Patricia Baquedano-López for their thoughtful and constructive engagement with my work. I greatly appreciate the feedback that Clara Mantini-Briggs, Kristina Lyons, Javier Auyero, and Gillian Feeley-Harnik offered on earlier drafts of this work. I also could not have gotten through dissertation writing without the love, support, and stimulating conversations provided by my fellow graduate students: Melina Salvador, Brittany Birberick, Nadia Gaber, Jonathan Wald, Candace Lukasik, Shakthi Nataraj, Héctor Beltrán, Nicole Rosner, Clare Cameron, Fabian Fernandez, Jaleel Plummer, Levi Vonk, Raphael Frankfurter, Vera Chang, Mauricio Najarro, and David Thompson. Finally, I would like to thank the UC Berkeley Institute for the Study Societal Issues Graduate Fellows Program for fostering a collaborative and constructive environment as I carried out this work. I am grateful to Deborah Lustig, Christine Trost, David Minkus, and all of the graduate fellows for their feedback and advice along the way. I could not have done this without them. Beyond the support offered by mentors and colleagues, the love of my family and friends sustained me as I carried out this project. I would like to thank my partner, Estefana Ramos, for making a warm and loving home with me, and for always encouraging me to slow down and pay attention to the subtleties that make the world beautiful. I also am grateful to Estefana for always reminding me the importance of standing up for the good, just, and nonviolent. I want to thank my parents, Martha and Simon Wright for loving me unconditionally and for offering me so many useful models for living. Finally, thank you to my dogs, Margot and Zoya, for being the cutest writing companions anyone could ask for. The research I conducted for this dissertation received financial support from the National Science Foundation, the University of California, the UC Berkeley Institute for the Study of Societal Issues, and the UC Berkeley Center for Race and Gender. iii Table of Contents Chapter 1…………………………………………………………………………..1 Pediatric Cancer Treatment in the United States: The Disneyfication of Care Chapter 2…………………………………………………………………………..17 The Field of Pediatric Cancer Treatment Chapter 3…………………………………………………………………………..37 Doing Fieldwork at Bay Area Children’s Hospital Chapter 4…………………………………………………………………………..58 Cancer Treatment and the Moral Force of Developmentalist Ideologies of Youth Chapter 5…………………………………………………………………………..82 Child Appropriateness as a Source of Stigma and Moral Iatrogenesis Chapter 6…………………………………………………………………………..104 Conclusion Bibliography………………………………………………………………………118 iv Chapter 1 Pediatric Cancer Treatment in the United States: The Disneyfication of Care On a sunny St. Patrick’s Day in 2018, I went down the street from Bay Area Children’s Hospital (BACH) to the BACH Research Institute, where the St. Baldrick’s Foundation was holding its annual “Brave the Shave” event to raise money for pediatric cancer research. Each year, the BACH oncology department helps to organize the event, which draws hundreds of people who have been personally affected by pediatric cancer, as well as those who work in proximity to cancer patients and their families—physicians, nurses, psychosocial professionals, researchers, etc. Everyone gets together in one space with food, music, entertainers, and a stage on which several shaving stations are set up and hair stylists stand wielding buzzing clippers that they use to shave each head that passes through their station. Each “shavee” campaigns prior to the event, using their personal and professional networks to generate donations to St. Baldrick’s. As shavees take the stage, their friends and family members watch in amusement as locks of their hair tumble to the ground, leaving their scalps exposed. The event was held in a large, open area at the Research Institute, where bookcases full of medical journals lined the walls. Folding tables were set up with cookies and other refreshments. Loud pop music was playing from several large PA speakers that flanked the stage, and some of the crowd members danced along. There was a man with a microphone acting as an MC, telling jokes, asking audience members questions, and calling up each group of shavees as their time slots approached. Each group went up in regular intervals, and those who had longer hair first had it measured to see if it was long enough to donate to a non-profit organization run by the hair care product company Pantene, which uses the donated hair to make wigs for cancer patients.

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