UC Berkeley UC Berkeley Electronic Theses and Dissertations Title Dying, Economized. Palliative Care and the U.S. Moral Economy of Death Permalink https://escholarship.org/uc/item/2505k6sm Author Livne, Roi Publication Date 2016 Peer reviewed|Thesis/dissertation eScholarship.org Powered by the California Digital Library University of California Dying, Economized. Palliative Care and the U.S. Moral Economy of Death By Roi Livne A dissertation suBmitted in partial satisfaction of the requirement for the degree of Doctor in Philosophy in Sociology in the Graduate Division of the University of California, Berkeley Committee in Charge: Professor Marion Fourcade-Gourinchas, Chair Professor Neil Fligstein Professor Aaron Cicourel Professor Jodi Halpern Summer 2016 Abstract Dying, Economized. Palliative Care and the U.S. Moral Economy of Death by Roi Livne Doctor of Philosophy in Sociology University of California, Berkeley Professor Marion Fourcade-Gourinchas, Chair Dying, Economized is a sociological account of the intersection Between morality and economics in U.S. end-of-life care. It is based on ethnographic and historical analyses of hospice and palliative care—a new medical suBspecialty, which has transformed the U.S. way of dying and is today the main designated discipline treating dying and potentially dying patients. The dissertation analyzes the emergence of end-of-life care as a professional, moral, and economic field and the efforts of the clinicians active in this field to reconcile the tensions it engrains. The first part (chapters 1-3) explains how in the 1960s, 1970s, and 1980s clinicians, economists, and policymakers Began thinking of dying as a social proBlem: they argued that the dying were treated with inappropriate and costly medical interventions, which posed serious ethical and economic challenges. The hospice and palliative care solution to these challenges, which has gained much influence since the 1960s, is to economize dying, Both medically and financially: to restrain the medical ambition to prolong life at all costs, nurture a culture that accepts death, and by that control spending. The second part (chapters 4-5) draws upon an ethnographic study that I conducted in three California palliative care services and on in-depth interviews with clinicians of various professions and specialties, whose work pertains to the treatment of dying patients. This part analyzes how palliative care clinicians negotiate the tension Between the effort to economize dying and the ethical inclination to respect patients’ wishes. Through this miXed-methods approach, the dissertation illuminates how expertise defines the relationship Between moral and economic life in one of the most ethically challenging areas in modern medicine. 1 Acknowledgements Dozens of people accompanied the long process of researching and writing this dissertation, providing support and contriButing insight. I am indeBted to those who read the dissertation in whole or in part; patiently commented on incomprehensiBle drafts and ideas; supported me through long periods of hesitation and douBt; challenged my thinking; agreed to interview; let me oBserve them at work; and allowed me to listen to them discuss their or their family member’s devastating medical condition. For reasons of confidentiality, I am unaBle to mention names of people in the last three groups. Some of the rest I am listing Below, knowing I could not eXplain how much I owe them in a short acknowledgement section, and hoping I have done a Better job eXpressing my deep gratitude over the long years we have known each other. I spent nine intense years in the department of sociology at the University of California, Berkeley—an intellectual home, which always kept me Busy and challenged. Marion Fourcade, my dissertation chair, read multiple drafts and spent long hours talking to me and sharing her ideas. She and I exchanged nearly 1,500 email messages over the past decade and the net time she spent advising me could proBaBly Be measured in weeks. I cannot do justice to her humble way of nurturing students—her rare aBility to provide the most rigorous feedBack and at the same time allow you the space needed to develop your own thinking. Neil Fligstein was always there to read drafts and provide moral support in the Best and worst of moments. Everything was more doaBle and less intimidating with him around, always involved and caring. Aaron Cicourel commented on this project from its very Beginning, first informally, then as a very active committee member. Like all sociologists, I cannot live up to his methodological standards, But I am lucky to have encountered them early enough to understand my limits! Jodi Halpern—an incredible scholar and possiBly the most availaBle academic I have ever met—graciously joined the committee as a non-sociologist member. I Benefited greatly from her insider’s and outsider’s perspectives. This project was supported By generous fellowships and grants from the Charlotte Newcombe Foundation, the Center for Research on Social Change, and the Berkeley Sociology department. The friendship and love of Anasuya Singupta, Ashwin Mathew, Avital Grunpeter, Ben Gebre-Medhin, Shemi ShaBat, Fithawee Tzeggai, Kristin George, Lisa Feldstein, Luke Fletcher, Mimi Kim, Sara Macdonald, Tom Pessah, Trevor Gardner, and Veena DuBal made these long years sustainaBle. The inexplicaBle optimism of Becky Tarlau made me feel there was still hope. Berkeley colleagues such as Corey Abramson, Edwin Ackerman, GhaleB Attrache, AleX Barnard, Nora Broege, HerBert Docena, Fidan Elcioglu, ReBecca Elliott, Michel Estefan, Aya FaBros, Tom GilBert, Teresa Gonzales, Graham Hill, Katherine Hood, Seth Leibson, Zach Levenson, Elif Kale Lostuvali, Margo Mahan, Adam Reich, Zawadi Rucks Ahidiana, Phung Su, AleX Roehrkasse, Manuel i Rosaldo, Nazanin Shahrokni, Jonathan Smucker, and Gowari Vijayakumar made life in Berkeley interesting and enjoyaBle. So did the Berkeley Sociology staff: Anne Meyers, Bill Gentry, Carloyn Clark, Carmen Privat-Gilman, Belinda White, and Tamar Young. Vicki Bonnell, Michael Burawoy, Heather Haveman, Mara Loveman, Dylan Riley, Ann Swidler, and Cihan Tugal were not formal committee members, But contriButed much insight on many occasions. Charles “CB” Brown, DeBorah Freedman Lustig, AleX Garcia, Pam Mei GrayBeal, David Minkus, Frank Neuhauser, Martin Sanchez-Jankowski, and the marvelous Christine Trost from Berkeley’s Center for Research on Social Change and Institute for the Study of Societal Issues were a supportive home three Blocks away from the sociology department. DeBBie Berstein, Vered Kraus, and Yuval Yonay’s provided friendship from near and far. Nadia Barhoum, Sara Haj-Hassan, Viveka Jagadeesan, Emiliano Huet-Vaughn, David McCleary, Taliah Mirmalek, Kash Nikazmrad, Kumars Salehi and many others from Students for Justice in Palestine are responsiBle for the most enriching and empowering political experiences I had in Berkeley. My family in Tel Aviv—Nurit Livne-Shilo, Moshe Livne, Tali Gal, Eitan Gal, Ran Livne, and Yael Pedatzur—gave me an indispensaBle sense of security. My partner, Ashley Bates, entered my life when I Began working on this dissertation. Our daughter, Dalia Bates-Livne, joined us a year and a half ago. The former made everything easier, the latter made academic life more difficult and personal life far more valuaBle. I cannot imagine my life without them, and I thank them for every moment we have shared. Berkeley, May 2016 ii Table of Contents Introduction…………………………………………………………………………1 Chapter 1: The Palliative Care Gaze…..................................................26 Chapter 2: The Financial Economization of the End of Life……64 Chapter 3: What the Dying Want…………………………….……………95 Chapter 4: Making the Dying SuBject………………………………….122 Chapter 5: Tricks of the Trade……………………………………………161 Conclusion……………………………………………………………………...…195 Notes…………………………………………………………………………………200 References…………………………………………………………………………222 iii Introduction Between Death Panels and Economization When I want to provoke people aBout my research, I say that I study death-panels. As distorted as the term is, the person Behind it (Sarah Palin or her ghostwriters) should be credited for coining a most powerful catchphrase. At the pinnacle of the deBate over the 2010 AffordaBle Care Act (“OBamaCare”) was a provision that reimbursed physicians for discussing end-of-life plans with patients: what treatments and procedures they would prefer to avoid if their medical condition declined. Palin, former RepuBlican vice-presidential candidate and an outspoken puBlic figure, vehemently opposed. First on her FaceBook page, then in the open- editorial section of the Wall Street Journal, she bashed the intention to save an estimate of $400-500 million through such discussion and said it would amount to “death-panels.”1 This statement resonated with a general point the RepuBlican Party was pushing throughout the period: aBout a month earlier John Boehner and Thaddeus McCotter wrote that the provision “may start us down a treacherous path toward government-encouraged euthanasia.”2 OBama, on his side, responded that the provision would not “pull the plug on grandma.”3 Quickly debunked and scolded, Palin’s allegation even won a prize for “lie of the year.”4 But it was also very effective. A 2011 poll found that 23 percent of U.S. adults thought that the AffordaBle Care Act gave government the power to make end-of-life decisions on Behalf of seniors and 36 percent were unsure. 5 The OBama administration had