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Power Shifts: How Patient Activism Shapes the Practice of Medicine A DISSERTATION SUBMITTED TO THE FACULTY OF THE GRADUATE SCHOOL OF THE UNIVERSITY OF MINNESOTA BY Susan Parry IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY Carl Elliott, Adviser November 2008 © Susan Parry 2008 i Acknowledgements I would like to thank my committee members Carl Elliott, Debra DeBruin, Jeff Kahn, and Valerie Tiberius, all of whom have been invaluable mentors and friends. Carl Elliott, my adviser, has been helpful and supportive beyond measure. I have had the pleasure of spending most of my time in graduate school at the Center for Bioethics at the University of Minnesota, directed by Jeff Kahn. I would like to thank all the Center faculty and staff for their direction and support during my years as a research assistant and especially in the last eighteen months as I returned to complete this dissertation. The Department of Philosophy also deserves my gratitude for a generous Swenson- Kierkegaard fellowship. Many family members and friends have helped along the way. Most of all, I would like to thank my husband Bill Vann whose love, friendship, and support not only made completing this project possible, but made it worthwhile. ii For my children Wilson, Willa, and Oscar iii Abstract This dissertation examines specific phenomena that illustrate a unique aspect of the role of patient activism in shaping the practice of medicine. Each chapter focuses on a specific example. The four examples are the rise of Morgellons disease, activism by sufferers of chronic Lyme disease, research subject activism, and the use of patients to market Paxil for social phobia. I use these examples to examine various shifts of power that have occurred in medicine over the last few decades. These shifts can be generally divided into two types: a shift in power from physicians to patients and an overlapping shift in power from professional medicine to various corporate entities. In the past thirty years, patients have taken more and more control over their own medical care. Over this same time period the pharmaceutical industry became a highly profitable business, increasing its economic and political power and research has become more commercialized. The older fee-for-service model of medical practice has been replaced with a corporate model and the influence of professional medical bodies has waned. Each of the shifts documented here has its own moral story, but together they also point to larger trends in medicine that have important moral consequences. In the conclusion I point to four different points of tension for ethics: a shift in the locus of moral expertise, the changing physician-patient relationship, ambiguity in the goals of medicine, and the role of bioethicists as watchdogs for patients. iv Table of Contents Introduction……………………………………………………….………1 Chapter One: Morgellons Disease………………………………………8 Chapter Two: Chronic Lyme Disease…………………………….……51 Chapter Three: Research Ethics…………………………………….…89 Chapter Four: Social Phobia ……………………………………..…..120 Conclusion………………………………………………………….…..157 Bibliography…………………………………………………………...170 1 INTRODUCTION A woman comes to an appointment with a dermatologist armed with dozens of pages printed off the internet, claiming that she has fibers growing under her skin. A patient with a history of a tick bite and uncertain diagnosis requests that his physician prescribe long-term antibiotics. Testifying in front of an FDA panel, a cancer patient representing a patient group funded by a pharmaceutical company explains why it is so important that the latest cancer drug be approved. A shy college professor asks her doctor for a prescription for Paxil after identifying with a public awareness poster that asked her to “Imagine Being Allergic to Life.” Each of these examples involves patient activism—individual patients and patient groups making demands for power that end up shaping the practice of medicine. In this dissertation I use these examples to examine various shifts of power that have occurred in medicine over the last few decades. Most of the shifts have empowered patients, but we will see that other groups, such as pharmaceutical companies, have exploited the power of patients for their own benefit. Aim and Scope of the Dissertation Each chapter examines a specific phenomenon that illustrates a unique aspect of the role of patient activism in shaping medicine. The four examples are the rise of Morgellons disease, activism by sufferers of chronic Lyme disease, research subject activism, and the use of patients to market Paxil for social phobia. This dissertation will add depth to this literature by examining these examples individually and as a class, 2 with a particular emphasis on the role of power. The project is both descriptive and normative. In each chapter I point out particular tensions that have arisen and ask how these tensions came about, giving a description in response. Each chapter also raises important normative questions, which I raise and address at the end of each chapter. Rather than trying to answer questions of clinical ethics, such as how physicians should respond to the requests of patients, which will depend on the details of each particular case, I have tried to place these questions in a larger social context that will make them easier to interpret. The concluding chapter looks at these normative questions in a more comprehensive and systematic way, pointing to larger shifts in medicine. Taking a comprehensive view of these aspects highlights larger moral implications of the shift in power to patients. Respect for autonomy is important, but can patients genuinely become knowledgeable enough about health and illness to make the best healthcare decisions? Can they be knowledgeable enough to protect themselves from those who want to exploit them for profit? Does this change in the context of psychiatric illness? The conclusion of the dissertation will take up a larger question: now that doctors have begun to lose their authority and clinical practice has begun to lose its traditional moral content, where does that leave medicine? A recent study published in BMJ found that half of physicians routinely prescribe placebos for their patients. 1 On the surface, this could be taken as evidence that medicine has not really changed all that much over the last few decades. Physicians deceive their patients because they think they are acting in the patients' best 1 Tilburt, Jon C. et al. "Prescribing 'Placebo Treatments': Results of a National Survey of US Internists and Rheumatologists." BMJ, 337 (2008): a1938. 3 interests; the old model of medical authoritarianism is still strong. The work in this dissertation will suggest a different interpretation: rushed physicians, who do not have a long-standing relationship with their patients, prescribe placebos in response to patients' desires , not their needs . Summary of Chapters Chapter One: Morgellons Disease The phenomenon of Morgellons disease seemed to come out of nowhere in 2003 when Mary Leitao, a Pennsylvania mother and former hospital laboratory technician, set up a website in hopes of determining what was ailing her two-year-old son, who appeared to have fibers coming from sores on his mouth. She named the condition Morgellons disease after a similar sounding condition reported in French medical journals in the eighteenth century. Since then, alarming news reports have warned people of a new, mysterious disease, and nearly 13,000 sufferers of Morgellons disease have registered on her website. Many believe that they are suffering from an infectious disease that gives them the tingling sensation of fibers crawling under their skin. These patients have banded together, trying to get the medical establishment to take their concerns seriously. After much lobbying by members of Congress, who were inundated by mail from constituents, the CDC has launched an investigation into Morgellons disease. In general, however, the activism of Morgellons disease patients has not been very successful yet, primarily because the majority of physicians do not believe their claims. They think, instead, that these people are suffering from delusional parasitosis (DP), a 4 previously recognized mental disorder. In this chapter I use the work of the philosopher of science Ian Hacking on transient mental illness to try to explain what might be going on in the case of Morgellons disease. I also use Morgellons disease as an example of the limits of patient activism, because so far, the efforts of activists have had only minimal practical effect. Patients may be making demands of their physicians, but few physicians are giving in to them. Chapter Two: Chronic Lyme Disease In the 1970s patient activists were instrumental in the discovery of acute Lyme disease, an infectious disease transmitted by tick bite, by helping researchers discover the tick-borne bacterium that causes the disease. Later, however, many Lyme disease patients began to complain of symptoms long after the original infection, and ask their physicians for more antibiotic treatment. Chronic Lyme disease refers to a condition in which a patient has received standard antibiotic treatment for acute Lyme disease, but whose symptoms return months or even years later. Most researchers think the condition is rare, but a large and increasingly powerful group of patients, along with sympathetic physicians, think otherwise. The story of chronic Lyme disease illustrates just how powerful some patient advocacy groups have become. Chronic Lyme disease activists have marshaled a remarkable amount of political and social power, despite objections from leading Lyme disease authorities. The debates over chronic Lyme disease have also taken place during the rise of evidence-based medicine (EBM). While EBM describes a new paradigm for medicine, with research guiding practice, the story of chronic Lyme 5 disease describes a competing paradigm, driven primarily by the experiences of patients. Chapter Three: Research Ethics Accounts of patient activism often start with the story of AIDS activists in the 1980s, who protested in order to get access to clinical trials testing drugs for AIDS.

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