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The social and cultural legitimation of complementary and alternative medicine in cancer care : an ethnography Fryer, Margaret L. 2003

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The Social and Cultural Legitimation of Complementary and Alternative Medicine in Cancer Care: An Ethnography by M A R G A R E T L. FRYER B. A. University of British Columbia 1970 M. A. University of British Columbia 1974 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY In THE F A C U L T Y OF GRADUATE STUDIES Individual Interdisciplinary Studies Graduate Program We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA September 2003 © Margaret L. Fryer 2003 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia Vancouver, Canada Date DE-6 (2/88) ABSTRACT This dissertation explores the question of how the legitimacy of different approaches to healing is socially and culturally constructed. Questions about the legitimacy of what has come to be called "Complementary and Alternative Medicine" or CAM have come to the forefront of both health policy and public discourses as the popularity of these non-biomedical approaches to healing has grown. The dissertation used an ethnographic approach to explore the complex issues related to the legitimation of CAM. This interdisciplinary research focused on the field of cancer treatment since a significant proportion of cancer patients use both conventional and unconventional treatments and since treatment decisions have important consequences. Fieldwork was undertaken in the Lower Mainland area of British Columbia over a period of three years. A total of 45 in-depth individual interviews were done with 17 cancer patients, six oncologists, three nurses who specialize in cancer care, and 11 professionals involved in CAM, including practitioners of traditional Chinese medicine, naturopathy, chiropractic, healing touch, and psychospiritual counseling. Eight people participated in more than one interview. A focus group with seven cancer patients was done to supplement the interviews. Participant-observation was done in a variety of relevant settings including a committee considering how to integrate CAM with conventional medicine, a healing group for patients, and public lectures, conferences, and events. Textual material from public media was analyzed. The dissertation uses the results of the fieldwork, particularly the experiences of patients, to formulate a model that elucidates the processes whereby emerging cultural models are linked with personal experience to form situated meanings about legitimacy that take root through social practices. The dissertation argues that underneath the growing use of CAM lie important changes in the way people.are thinking about the nature of the body, the nature of health and healing, and relationships between patients and health care providers. In addition, the use of CAM is associated with the adoption of epistemologies that undermine the hegemony of scientific rationality. The implications of these findings for health care policy, practice, and research are discussed. CONTENTS Abstract ii Table of Contents iii List of Tables : vii List of Figures viii Preface '. : ix Acknowledgements ; xi CHAPTER ONE: ' • ' . The Research Problematic: The Legitimacy of Complementary and Alternative Medicine Introduction ; 1 Overview of the Dissertation 4 The Health Care Context: A Guiding Framework 5 Complementary and Alternative Medicine: Definitions and Taxonomies 7 CAM Use and Responses to its Use 14 The Increasing Use of CAM.: : 14 Cancer Patients' Use of CAM 16 Patients' Reasons for Using CAM : 17 The Biomedical Response: Reluctance to Engage with CAM .....19 The Biomedical Response: The Call for Evidence : 21 The CAM Response: The Call for Integration 24 CHAPTER TWO: Social and Cultural Aspects of CAM's Legitimacy Introduction 27 Sociocultural Forces Associated with the Growth in CAM ..28 Lessons from Previous Ethnographic Enquiries into CAM 31 CAM Users Want More than Biomedicine Offers 32 CAM Expands the Moral Dimensions of Illness..... 33 Biomedical Biases Limit the Utility of Research into CAM 35 Experience Counts in Decision Making 36 CAM as a Social Movement ...37 Legitimacy as the Focus of Inquiry 40 Investigating the Social Construction of Legitimacy '. 42 CHAPTER THREE: The Ethnographic Approach to the Research Introduction 46 My Approach to the Ethnography ...47 The Critical-Interpretive Approach .......47 My Interest in the Research Issues 50 Objectives of the Research 54 The Fieldwork Setting 54 Fieldwork Methods .58 Interviews with Cancer Patients ..: 58 Interviews with Conventional Practitioners 65 Interviews with Complementary and Alternative Practitioners 66 Participant-Observation 68 Collection and Review of Texts and Discourses 70 Ethical Considerations 71 Analysis and Interpretation of Data 73 Trustworthiness of Analysis and Interpretation 78 Strengths and Limitations of the Methods ; 81 CHAPTER FOUR: Conversations with Patients Introduction........'. 87 Joel: If it's not going to harm me, I might as well try it 88 Reflections • 93 Brian: Pulling out all the stops 96 Reflections .• 101 Angela: Erasing, rearranging, and creating personal meaning 104 Reflections 110 Marcia: This is my body and I decide 113 Reflections • 117 Linda: The terror nobody is addressing ; • 119 Reflections... '. 122 Jack: Hands-on all the way...: 124 Reflections , ••••• 128 CHAPTER FIVE: Biomedical Perspectives on CAM's Legitimacy Introduction -130 Cancer Patients' Use of Complementary and Alternative Medicine 133 Patient-Practitioner Relationships 138 Science as a Source of Legitimacy 147 Reflections 153 iv CHAPTER SIX: Complementary and Alternative Medicine: Inside the Margins Introduction 160 CAM Practitioners' Perspectives 161 The Use of CAM by Cancer Patients 161 Models about the Nature of the Body-Mind and about Health and Illness 164 Models about Patient-Practitioner Relationships 167 Science as a Source of Legitimacy .. , 170 Cultural Models that Legitimate and Undermine ...173 The Nature of the Mind/Body: Deepak Chopra 174 The Self and Healing: Marion Woodman 178 Science and the Legitimacy of CAM: Health Canada's Consultation on NHPs 181 Hybrid Professionals: Bridging Worlds 186 Integration 189 Reflections....^  198 CHAPTER SEVEN: Popular Discourses on the Legitimacy of CAM Introduction 203 The Arena of CAM Discourses ..204 The Popular Media 211 The Internet.. 219 Reflections '. • 230 CHAPTER EIGHT: Sociocultural Legitimation Processes and their Implications Introduction 234 The Health Care System: Kleinman's Model Revised .-. ....237 The Importance of Culture 241 Dimensions of Sociocultural Legitimation Processes 243 Cultural Models that Influence Decision Making 246 Models about the Nature of the Body-Mind and about Health and Illness 247 Models about the Patient-Practitioner Relationship 248 Models about the Legitimacy of Different Sources and Types of Knowledge 249 The Spread of Cultural Models .x 254 Frame Alignment Theories 255 The Crucial Role Played by Personal Experience 258 Communities of Practice 260 The Sociocultural Attribution of Medical Legitimacy: A Model 262 Implications for Health Care Policy, Practice and Research 265 REFERENCES.... 271 v Appendix A: Profiles of Patients Interviewed 289 Appendix B: Research Participant Recruitment Material ...302 Appendix C: Consent Forms 305 Appendix D: Schematics Depicting Patient Decision Making 314 LIST OF TABLES Table 1: Taxonomies of CAM 13 Table 2: Characteristics of Cancer Patients Interviewed Individually ........1 60 vii LIST OF FIGURES Figure 1: Patient-Centred Health Care System 238 Figure 2: Sociocultural Legitimation Network....... 264 viii PREFACE The research reported here was driven by both intellectual curiosity and personal commitment. The question of whether complementary and alternative medicine is legitimate is a hot topic in the public arena. Despite the level of public interest, there has not been a great deal of social science research regarding this complex question. When I began my PhD program I knew that the area was ripe for investigation. Through my previous work as a researcher in a variety of health care settings I was aware of some of the challenges that stood in the way of resolving the question. Through my engagement with practices such as Tai Chi and meditation, I knew that underneath the question were profound differences between conventional medicine and some of the therapies and medical systems whose legitimacy was being contested. I believed I was in an ideal position to undertake an exploration of the issues. But it was the experience of some friends that made me realize, that the issues were not only of academic interest. The phone rings. "Hello?" "Hi Margo, this is Doreen." Something in her voice coupled with the fact it is 9:30 on a weeknight raises a subliminal alarm bell, but I continue with the usual ritual. "Doreen. Hi. How are you?" "Oh Margo. I'm not good." She pauses, her voice shaky. I wait, now alert for the bad news. "Camille has had this ear infection that wouldn't go away. We took her to the doctor and they did a blood test. We found out today she's got leukemia." Doreen is one of those rare friends who have moved into the category of family. We even refer to each other as sisters sometimes. I have known her and her husband, Ted, for many years. Camille, their only child, was born six years ago not long after Doreen had a serious case of pelvic inflammatory disease. For Ted and Doreen, Camille is a miraculous gift. We talk for some time. I get as many of the details as I can, but there is still a lot of uncertainty. The next day I go to the hospital, unannounced. I can't stay away. Doreen sinks into my arms when she sees me. We hang on to each other for a while, me trying to provide strength. She gives me more information about the diagnosis and the intensive chemotherapy regime that is being recommended. Camille lies curled on a cot in the room. She is quiet, still, her skin ashen. When adults I've known have been diagnosed with cancer, there has been an air of unreality about it because they don't look or feel sick. But Camille looks sick. I can't tell whether she really is as sick as she looks or whether her state is just a reaction to the cloud of trauma and distress that surrounds her. Ted arrives. He is agitated. His usual calm, grounded manner is completely missing. Ted and Doreen talk about the treatment regime that is being recommended. Not long ago, Ted qualified as a doctor of traditional Chinese medicine (TCM). Both he and Doreen have been involved in alternative approaches to healing such as bodywork and meditation for years. ix Doreen just wants to save Camille's life. But Ted is aware of some of the side-effects of chemotherapy and knowledgeable enough about medicine to know that, even though short-term survival rates for kids with leukemia are now pretty good, the long-term effects of the strong drugs that are used are not known. He does not want to agree to chemotherapy. I can see that the conversation is only upsetting everyone, so I suggest that Ted and I go for a walk. We leave the hospital and march into Queen Elizabeth Park. We wind our arms around each other's bodies, the way lovers do. It seems the only way to keep Ted from exploding. It's a warm, sunny day. Tourists and locals stroll through the gardens, laughing, taking pictures. But every child I see suggests loss. The bright, vibrant flowers are an insult. "How can I let them put poison into my baby's veins?" says Ted, almost shouting. " I f it was me, I wouldn't agree to chemo. I love her more than I do myself. Why would I make her submit to something that I wouldn't have?" We talk about alternative treatments for cancer. Ted's already been on the Internet. He's talked to the T C M doctor who trained him. He's collating information about herbal remedies that help to detoxify the organs after chemo. But he doesn't want to go there. He fundamentally disagrees with the premises of the medical model. He does not see cancer the way the oncologists do. He does not want to spend the next several years at the mercy of a system he has no respect for. But he's caught. Over the course of days and weeks, Ted and Doreen reached agreement about Camille 's treatment: some chemotherapy, but no participation in clinical trials, so her treatment could be individualized; fewer rounds of chemo than recommended; a regime of herbal remedies and supplements to strengthen her immune system and cleanse her organs; the creation of a network of social support for Doreen and Ted; and monthly meditation sessions on Camille's behalf. In the ensuing two years, Ted, Doreen, and Camille suffered through the ups and downs of conventional treatment and all that this entails. Camille became bloated from the prednisone. She missed a lot of school and had to avoid sports and other activities. She lost all her hair. Her classmates teased her..There were scares because of unexplained fevers and infections. And other reasons for fear—one of Camille 's oncologists inadvertently gave another child an injection in the wrong site and the child died. Ted's medical expertise was dismissed by the conventional doctors and nurses. Not only did they not recognize any merit in T C M but they felt it was not appropriate for him to be treating a family member, so they refused to engage in Ted's attempts to play a role in the management of Camille 's care. Ted and Doreen felt even their personhood was dismissed. They were one of "the cancer families" so the professionals kept their distance. Today, Camille is'a strong, talented girl on the verge of adolescence. She is like most other almost-teenaged girls except for the occasional sign of precocious wisdom that surfaces—the result of hardship experienced too young. Camille Paloma Thomas, this dissertation is for you. x ACKNOWLEDGEMENTS I would like to express my appreciation to the many people who contributed to the research on which this dissertation is based and who supported me through my PhD program. First, my profound thanks go to the individuals who participated in my fieldwork. The stories and thoughts of the people I met who used complementary and alternative treatments for cancer and the perspectives of the health professionals I interviewed are the foundation on which the dissertation rests. I hope I have been able to adequately convey the significance of the experiences and understandings with which I was entrusted. > I also want to extend my sincere gratitude to the members of my supervisory committee: Tannis MacBeth, Ken Bassett, and Simon Sutcliffe, and especially to the co-chairs of my committee: William McKellin and Joan Bottorff. Their guidance through the various stages of the PhD program, their help in identifying authors and ideas that would further the evolution of the research, and their constructive feedback on drafts of , the dissertation were invaluable. I was fortunate to have received a scholarship from the British Columbian Health Research Foundation. I am very grateful for the financial support that enabled me to focus on the research during the critical stages of my program. Dennis Pavlich, UBC's Vice-President of External and Legal Affairs, and my colleagues at the UBC Learning Exchange have given me strong support over the past few years. They have never complained about my attention being divided between my work with them and my writing of the dissertation. I have also received enormous support from my close friends of many years, Ted and Rosemary Cragg. The countless times they provided nourishment for both body and soul sustained me when I needed it most. Finally, my deep appreciation goes to my dear husband, Richard Piers. He listened when I needed to talk in order to find out what I was thinking and shared the celebrations of the various milestones along the way. Without his unwavering support, the dissertation would not have been done. xi C h a p t e r O n e The Research Problematic: the Legitimation of Complementary and Alternative Medicine Introduction This dissertation explores the question of how the legitimacy of different approaches to healing is socially and culturally constructed. The dissertation focuses on the experiences of cancer patients and health professionals who are struggling to make sense of difficult issues. Questions about the legitimacy of different medical treatments have come to the forefront of both popular and academic discourses with the public's use of a variety of healing techniques, practices, and substances that exist outside the institutionalized scope of professional medicine. This diverse array of non-biomedical approaches to healing has come to be known as Complementary and Alternative Medicine or C A M . Since many of the treatments and medical systems that are being used are unknown by biomedicine and some are inconsistent with conventional medical concepts and practices, their use by patients is creating tensions within health care. For cancer patients, the situation is difficult. Their lives depend on the decisions they make about what treatments to undergo. Rarely can conventional medicine offer guarantees of treatment outcomes. Some conventional cancer treatments have side-effects that influence quality of life. 1 There are many CAM treatments available but relatively little research has been done about their safety or efficacy and little is known about how they interact with conventional treatments. For professionals and policy makers, too, the questions are challenging: Which of these CAM treatments are safe and effective? Should their value be assessed according to the same scientific standards biomedicine is expected to meet? If these treatments are of value, should they be incorporated into the health system? This dissertation attempts to bring clarity to the complex issues surrounding the legitimacy of CAM by elucidating the processes by which individual patients and health care practitioners come to see different approaches to healing as legitimate. In using the word "legitimate" I am referring to the usual meanings of the word: sanctioned by law or custom; reasonable; logically correct; justifiable or justified; or conforming to established rules, standards, or principles (Guralnik 1980). The focus ofthe dissertation is on the ways in which individuals legitimize different cancer treatments through their engagement with cultural and social influences. The focus is not on the ways that social groups or institutions legitimize different medical approaches or practitioners, e.g., through professionalization or government regulation. The dissertation also does not attempt to answer questions about whether any particular treatment or the field of CAM in general is or is not legitimate. Rather, the research focuses on the processes whereby conceptions of legitimacy are socially and culturally constructed. I expolored the nature of these legitimation processes by investigating the experiences of people with cancer who use alternative treatments and by eliciting the perspectives of professionals who care for cancer patients, including those who are aligned with biomedicine and those who practice various CAM approaches. The 2 dissertation describes the results of ethnographic fieldwork undertaken in the Vancouver area which relied on qualitative interviews, participant-observation and analyses of textual material to develop an in-depth understanding of the issues raised by the convergence of different approaches to cancer treatment. The research focused on cancer because questions about medical legitimacy are highly salient in this area. A significant proportion of cancer patients use both conventional medicine and CAM. Since cancer is a potentially life-threatening disease, treatment decisions have important consequences. The research was interdisciplinary in that it combined the literature and theoretical concerns of three different disciplines: anthropology, sociology, and health policy. Relevant literature from the fields of medicine and nursing also contributed to the investigation. Integrating these disciplines has been crucial to the achievement of an understanding of the issues that is broad enough in scope to encompass all the relevant issues. The dissertation uses the results of the fieldwork, particularly the experiences of patients, to formulate a model that describes the processes whereby legitimacy comes to be attributed to different approaches to healing through the interaction of cultural models (culturally constructed beliefs or stories about how things are) with personal experience. The model describes the important role played by social settings in the construction of . legitimacy since this is where ideas about legitimacy can be tried out and either confirmed or rejected. The dissertation argues that, underneath the public's use of CAM techniques, lie important changes in the way people in Western cultures are thinking about the nature of the body and the mind, the nature of health and healing, and the kinds of relationships that patients should have with health care providers. In addition, the use 3 of C A M is associated with the adoption of epistemologies that undermine the hegemony of scientific rationality. The dissertation argues that the understanding of legitimation processes derived through the fieldwork provides a foundation for the clarification of the complex issues raised by the debates about C A M ' s legitimacy. Overview of the Dissertation This first chapter of the dissertation sets the stage for the exploration of the research issues by providing a guiding framework for the health care system, a description of the primary differences between biomedicine and C A M , and a summary of previous research regarding the issues raised by C A M use. In chapter 2,1 draw on literature from the social sciences to outline the social and cultural aspects of the question of C A M ' s legitimacy. Chapter 3 provides a.detailed description of the research methods used. Chapter 4 presents in-depth portraits of the decision-making processes of six of the 17 people with cancer who participated in individual interviews. Chapter 5 focuses on the perspectives of biomedical practitioners who specialize in cancer care. Chapter 6 presents the thoughts and opinions of practitioners of a variety of healing approaches, including traditional Chinese medicine, healing touch, and psychospiritual counseling. This chapter also includes descriptions of social settings where the legitimacy of C A M techniques and ideas is being both promoted and contested. Chapter 7 provides examples from popular media, including the Internet, that show the kinds of cultural models that are being promulgated by C A M proponents as well as the contentiousness of the debate about C A M ' s legitimacy. The concluding chapter presents my analysis of sociocultural legitimation processes and their implications. . 4 The Health Care Context: A Guiding Framework Since this dissertation focuses on the socio-cultural construction of the legitimacy of Complementary and Alternative Medicine, it is important to provide a conceptual framework for the comparison of medical systems that explicitly recognizes the importance of social and cultural factors. Kleinman (1978) has outlined a model that describes the structure and functions of health care systems as cultural systems. In his elucidation of his model, Kleinman notes that medical systems are both cultural and social, i.e., they include systems of meaning and behavioural norms as well as connections between these cultural systems and particular social relationships and institutional settings.1 Kleinman conceives of culture as mediating between the external aspects of health care (i.e., social, political, economic, historical, epidemiological, and technological factors) and its internal aspects (i.e., psychophysiological, behavioural, and communicative processes). Kleinman defines culture as a system of symbolic meanings that shapes both social reality and personal experience; it mediates between the external and the internal and thereby determines the contents of different medical systems, their effects, and the processes of change they undergo. . Kleinman (1978) identifies three social arenas within any health care system: the popular; the professional; and the folk. The popular arena is where the influence of the family, informal social networks and other community connections predominates. Kleinman points out that in both Western and non-Western societies, between 70 and 90% of health problems are managed solely within this arena. The professional arena consists of conventional Western ("scientific") medicine as well as other healing 1 The strength of Kleinman's model is that it emphasizes social and cultural factors. One of its weaknesses is that it does not explicitly consider political and economic factors. 5 traditions that have become professionalized (e.g., chiropractic and traditional Chinese medicine). The folk sector consists of non-professional healing specialists (e.g., faith healers and teachers of mind-body practices such as meditation, yoga or tai chi). Kleinman asserts that health care systems perform several core tasks that allow individuals and groups to respond to illness. The core tasks that are most relevant to this dissertation are: the social and cultural construction of the illness experience; the social and cultural construction of strategies and evaluative criteria to guide treatment decision making; and the cognitive and communicative processes involved in attaching personal and social meanings to illness episodes. Kleinman sees the attribution of personal and social meaning to illness as a central aspect of any healing process. In fact, he and other medical anthropologists believe that the successful explanation of an illness episode alone can be seen as signifying healing, regardless of the fate of the ill person. In such situations, there is a fit between expectations, beliefs, behaviour and evaluations of outcome. Healing then, has different aspects: physiological, psychological, social, and cultural (Kleinman 1995). ' While Kleinman's model includes conventional medicine and alternative medical systems in the same category of the "professional" sector, it is important, especially given the topic of this dissertation, to point out that there are significant differences between conventional biomedicine and alternative medical perspectives. Kleinman (1995) asserts that while biomedicine is a pluralistic collection of practices and practitioners, it does have defining features. For Kleinman, biomedicine includes monotheistic ontological and epistemological commitments that distinguish it from other medical systems, especially those rooted in Asian traditions. Biomedicine differs from 6 other medical systems in its dualistic separation of mind and body, its reductionism, its materialism and the corresponding requirement for pathogenesis to be explained by single causal chains (D Gordon 1988b; Kleinman 1995). Several authors have attempted to describe a generalized paradigm for CAM that includes fundamental tenets that can be contrasted with those of biomedicine (e.g., Lowenberg 1989; Vincent and Furnham 1997; Goldstein 1999; Kelner and Wellman 2000). While these descriptions of the putative CAM paradigm vary, some tenets that are commonly contrasted with those of biomedicine include a holistic view of the mind-body-spirit, individualized rather than standardized treatment regimes, and an acceptance of non-scientific sources of knowledge such as textual accounts of the observations of previous generations of clinicians. While later sections of the dissertation suggest that it is overly simplistic to view CAM and biomedicine as being on opposite ends of the medical spectrum, it is important to note that there are significant differences among different medical systems. These differences underlie the complexity of the issues that are being raised with the convergence of CAM and biomedicine. Complementary and Alternative Medicine: Definitions and Taxonomies Gne of the strengths of Kleinman's model of health care as a cultural system is that it reminds us that health and illness are not just the domain of professional medicine. So far, however, professional perspectives on the public's" use of CAM and the resulting issues have been the primary focus of most of the social science and medical literature. This literature will be summarized in the next sections of this chapter. 7 The use of non-biomedical approaches to health and healing is not new. But the public awareness and use of unconventional treatments in the last decade has been reflected in a growing academic literature related to such therapies. Since the early 1990's, researchers in the medical and social sciences have struggled to bring clarity to the field. Attention has been paid to nomenclature, definitions, and taxonomies. Some authors have used terms such as "holistic medicine" to highlight the emphasis in some alternative therapies on the presumed unity of body, mind, and spirit. This holistic view is described as opposed to biomedicine's focus on materialistic and mechanistic conceptions of the body and disease (e.g., Lowenberg and Davis 1994; Cohen 1995). Descriptors used by authors who contrast alternative therapies with the biomedical status quo have included "unorthodox," "unconventional," or "non-proven" (e.g., Northcott 1994; Sheard 1994; Risberg et al. 1998). While some authors have made a distinction between alternative therapies (i.e., therapies used instead of conventional medicine) and complementary therapies (i.e., therapies used in combination with conventional medicine) (e.g., Kaegi 1998), the validity of this distinction was called into question by research that revealed that only a small minority of patients (approximately 5%) use alternative therapies to the exclusion of conventional medicine (Eisenberg et al. 1998; Astin 1998). With the establishment ofthe U.S. National Institute of Health's Office of Complementary and Alternative Medicine and its subsequent elevation to the status of an independent Center in 1998, the term "complementary and alternative medicine" or simply "CAM" has become widely used (Cohen 2000; Baer 2002; Pizzorno 2002), although some authors continue to use terms such as alternative medicine (e.g., Burstein 8 < et al. 1999) or unconventional therapies (e.g., Fitch et al. 1999). Proponents of complementary and alternative approaches have begun using the term "integrative medicine" (Best 1998; Baer 2002) or "integrative health care" (e.g., Cohen 2000; Tataryn and Verhoef 2001). These terms explicitly signal the desire to bring complementary and alternative therapies into the biomedical mainstream. As is obvious with the term "integrative medicine," the name used to refer to non-biomedical therapies often reveals a particular position with respect to the legitimacy of these therapies.2 Just as there have been differences in nomenclature, there have been differences in the way complementary and alternative medicine is defined. For the purposes of their surveys, Eisenberg et al. (1993 and 1998) operationalized "alternative therapies" as interventions that are not widely taught in medical schools and not generally available in U.S. hospitals. Other authors have used minor variations of this definition (e.g., Chez and Jonas 1997; Crellin et al. 1997). The strength of this definition is that it clearly indicates that the dividing line has been drawn according to what is considered acceptable within the medical mainstream. However, this definition has weaknesses. First, it encompasses a heterogeneous collection of techniques and medical systems (e.g., chiropractic, homeopathy, traditional Chinese medicine [TCM], massage, meditation, biofeedback, spiritual healing, and macrobiotics) whose only shared characteristic is that they lie outside the mainstream. Second, this definition obscures the reality that some alternative therapies are more acceptable than others. For example, although chiropractic and massage are generally included in the category of alternative medicine, they have already 2 In the dissertation I will usually use the term "complementary and alternative medicine" or "CAM." 1 do so because both the academic and popular discourses have coalesced around this term and it is now the most widely used. My own position with respect to the issues surrounding CAM is outlined in chapter 3. 9 been integrated into conventional health care systems to varying degrees, e.g., through the creation of professional colleges and/or coverage by private insurance companies.3 Third, the boundaries established by the definition are not stable: the majority of U.S. medical schools now offer courses in alternative medicine (Wetzel et al. 1998), some hospitals are creating complementary and integrated medicine programs (Jonas 1998), and some health insurers offer benefits packages that include CAM practitioners and services (Pelletier et al. 1997). 1 The Office of Alternative Medicine in the U.S. National Institutes of Health has defined CAM in a more abstract way that explicitly acknowledges the fact that the definition of CAM is context-dependent and that the term is perhaps inherently ambiguous: Complementary and alternative medicine (CAM) is a broad domain of • healing resources that encompasses all health systems, modalities and practices and their accompanying beliefs, other than those intrinsic to the politically dominant health systems of a particular society or culture in a given historical period. CAM includes all such practices and ideas self-defined by their users as preventing or treating illness or promoting health and well-being. Boundaries within CAM and between the CAM domain and the domain of the dominant system are not always sharp or fixed (NIH 1997 cited in de Bruyn 2001:11.18). • . The conceptual ambiguity in the academic discourse about complementary and alternative medicine can also be seen in the variety of attempts that have been made to develop taxonomies of alternative therapies. "CAM" comprises a wide variety of substances, techniques, and medical systems. Table 1 presents a summary of five different taxonomies that reflect a range of perspectives. The latest, version of the U.S. National Center for Complementary and Alternative Medicine's taxonomy puts CAM 3 British Columbia has professional colleges for massage therapists, chiropractors, naturopaths, and traditional Chinese medicine practitioners. Some private extended medical plans provide full or partial 10 into five categories (http://nccain.nih.gOv/healtli/whatiscam/#4; accessed May 2003). This categorization is based on the external characteristics of different CAM techniques. Other biomedically-oriented taxonomies that have been proposed use similar criteria for categorization but differ in the way specific therapies are grouped (e.g., Yates et al. 1993; Northcott 1994). As Table 1 shows, some other taxonomies use very different criteria as a basis for categorizing CAM. For example, Joseph Pizzorno, the former President of Bastyr University (which trains naturopaths) categorizes CAM according to practitioners' degree of legitimacy. As a proponent of CAM, Pizzorno sees the inclusion of the last two categories of practitioners (minimally educated practitioners and medical mavericks) within CAM as problematic (Pizzorno 2002). Tataryn (in Tataryn and Verhoef 2001) proposes a system that includes both conventional medicine and CAM and categorizes therapies on more theoretical grounds, i.e., their underlying assumptions about the nature of health and disease. While Tataryn's theoretical focus is potentially more coherent than those based on external characteristics of therapies or practitioners, all these taxonomies fail to satisfactorily make unambiguous distinctions among types of therapies or ontological assumptions. Another attempt to include both conventional medicine and CAM in the same conceptual framework uses a model developed by Ken Wilber. This model has been used to map a variety of phenomena according to their placement on a grid formed by two opposing axes: the individual vs. the collective and the interior vs. the exterior (Wilber 1995; 1998; 2000). Astin and Astin offer this model as a "powerful heuristic tool for conceptualizing health and illness, investigating the efficacy of different treatment reimbursement for some or all of these CAM services. 11 modalities, exploring the multifactorial nature of disease, and informing research methodology and medical education" (Astin and Astin 2002:74). While this model provides a map that is holistic and comprehensive, Astin and Astin fail to include an aspect of the model that Wilber considers crucial, i.e., that the map not only has horizontal dimensions but vertical ones as well. Wilber's integrative models all include a developmental or evolutionary aspect, usually portrayed as movement from the centre of the grid outwards or from the bottom upwards (e.g., Wilber 1995; 1998; 2000). In contrast, Larry Dossey's model of three eras in medicine clearly includes an assumption of evolutionary change. This model, too, applies to both conventional medicine and CAM. It is similar to Tataryn's model in that it is based on underlying ontological assumptions. Dossey describes public and professional interest in CAM as evidence of an evolution of consciousness and the dawn of a new era in healing (Dossey 1999). • These taxonomies shed some light on the range and diversity of healing approaches subsumed under the CAM label and reflect the variation in the ways different authors are thinking about CAM. Four of the five taxonomies in the table were developed by authors who are at least sympathetic to CAM, if not outright advocates of alternative approaches to healing. The last three models use less instrumental, more.theoretical criteria as the basis for their models than the more biomedically-oriented taxonomies. 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I-M •o & cu o C O L H w IS >% r ' •3 00 o Xi ft cu 2 * cu CD CU B cu 00 co in j= op ~ 3 * 13 O "3 O o O XI 3 ca J3 cj 3 O H .a ta oa U 3 3 2 53 fe u S s ° « E—1 02 JD • 00 -o a <t> 13 <u s « a _ca cj ca 3 *2 E .& 3 00 § c^-S E E s 4>i si i . CS ©I ^ "3 rs "E fc 8 U «S c o il *• cr. 95, <U> u - c 13 C A M Use and Responses to its Use The Increasing Use of Complementary and Alternative Medicine Although conceptualizations of CAM remain somewhat ambiguous, the trend towards increased use of these therapies is clear (Jonas 2000). However, the exact extent of utilization is proving to be difficult to determine. Different surveys include different techniques and approaches in their definition of CAM; use different methods to collect data; measure use over different time periods; and hence derive different estimates of prevalence. Studies done in the U.S. showed a 25% increase in the use of complementary and alternative medicine between 1990 and 1997 (Eisenberg et al. 1993; Eisenberg et al. 1998). Almost 32% of respondents in the 1997 survey who were seeing a medical doctor for a principal medical condition (e.g., back problems, arthritis, or allergies) also used an alternative therapy in the previous year. The therapies used most commonly were . chiropractic, relaxation therapies, and massage. The greatest increases in use occurred in herbal medicine, massage, megavitamins, self-help groups, folk remedies, energy healing, and homeopathy. For adults aged 35 to 49, one of every two persons used at least one alternative therapy. Utilization was more common among women, those with some college education, those with higher incomes, and people living in the West. The study's authors estimated that Americans spent $21.2 billion in 1997 on visits to alternative practitioners, a 45% increase since 1990. This amount exceeded the out-of— . pocket expenditures for all U.S. hospitalizations (Eisenberg et al. 1998). The same survey also revealed that a substantial portion of alternative therapy use occurs without input from either a conventional or an alternative practitioner. Among 14 respondents who had a medical doctor and used one or more alternative therapies, only 38.5% of the therapies were discussed with the respondent's doctor. This finding was unchanged since the 1990 survey. In addition, most use of alternative therapies occurred without the supervision of an alternative practitioner. The exceptions were therapies that require a practitioner's intervention, i.e., massage, chiropractic, hypnosis, biofeedback, and acupuncture (Eisenberg et al. 1998). Canadians are also showing increasing interest in alternative therapies, although national surveys have yielded inconsistent estimates of utilization. A 1997 CTV/Angus Reid survey found that 42% of all adult Canadians had tried complementary therapies (CTV/Angus Reid 1997). National Population Health Surveys have found that the use of the services of an alternative medicine practitioner among Canadian adults has increased, from 15% in 1994/95, to 16% in 1996/97, to 17% in 1998/99 (Millar 2001). The smaller . utilization rate in the second survey may be attributable to the more limited time frame for utilization and to the fact that interactions with a practitioner were measured rather than use of a therapy alone. While the estimates ofthe extent of utilization differ between the two surveys, the surveys indicate that the proportion of users is higher in western Canada than in other regions and that the rate of use is higher among women and among those with more education (CTV/Angus Reid 1997; Millar 2001). This demographic profile of CAM users is consistent with findings from the U.S. surveys noted above as well as other studies (Balneaves et al. 1999). It has been estimated that in 1996-97 a total of $3.8 billion was spent on CAM health care in Canada, with $1.8 billion being spent on alternative therapies, $937 million being spent on herbs and vitamins, $104 million on special diet programs, and more than 15 $998 million on books, classes and equipment (York University Centre for Health Studies 1999 cited in de Bruyn 2001). North America is not the only jurisdiction where biomedicine and CAM are converging. The growth in alternative therapies is also occurring in Australia, the United Kingdom and other parts of Europe (Kelner and Wellman, 1997; Hoey, 1998). Cancer Patients' Use of CAM Cancer patients have been using "unconventional" treatments ever since medical orthodoxy coalesced around the ideas and practices of scientific medicine in the early part of the 20th Century (Patterson 1987). Estimates of the proportion of cancer patients who currently use alternative therapies vary widely. One systematic review of studies of the prevalence of complementary and alternative medicine use among cancer patients found the percentage of adult users in thirteen different countries varied from 7% to 64%, with an average rate of 31.4%. The use among pediatric patients in the U.S. varied from 9% to 16% (Ernst and Cassileth 1998). A more recent review of studies of CAM use by cancer patients (Sparber and Wootton 2001) reported a range between 25 and 83%. The highest level of use was reported among patients attending outpatient clinics at a comprehensive cancer treatment centre. In this sample, the most popular therapies were spiritual practices (used by 81%), vitamins and herbs (used by 63%), and movement and physical therapies (59%) (Richardson et al. 2000). Similarly high rates of CAM use were reported among U.S. cancer patients by Bernstein and Grasso (2001). However, a survey of a random sample of early stage breast cancer patients found a lower rate of CAM use of 38.7% (Burstein et al. 1999). 16 In Canada, a survey of parents of pediatric patients diagnosed with cancer in British Columbia between 1969 and 1995 found that 42% of the patients had used alternative and complementary therapies (Fernadez et al. 1998). A recent survey of a random sample of breast cancer survivors in Ontario found that 67% of women used CAM. Thirty-nine percent of respondents in this survey visited a CAM practitioner (e.g., chiropractors, herbalists, acupuncturists, TCM practitioners and/or naturopaths), while 62% reported using CAM products such as vitamin/mineral supplements, herbs, green tea, special foods or Essiac (Boon et al. 2000). A different survey of a convenience sample of Canadian women with breast cancer also found a rate of CAM use of 67%, with meditation/relaxation therapies, vitamins/tonics, and spiritual/faith healing being the most frequently-used therapies (Balneaves et al. 1999). Patients' Reasons for Using C A M Previous studies have identified a variety of motives underlying CAM use. Some people who use CAM are simply making pragmatic decisions to try whatever treatment might work, but others are adopting ways of thinking about health and healing that are contrary to conventional biomedical conceptions (O'Connor 1994; Furnham and Beard 1995; Furnham 1996; Gray et al. 1997; Kelner and Wellman 1997; Astin 1998). Some studies of cancer patients have suggested that CAM use is associated with a desire to exercise control, including playing an active role in making decisions about treatment (Yates et all993; Montbriand 1995b; Ashbury et al. 1997; Balneaves et al. 1999; Truant and Bottorff 1999; Boon et al. 2000). Other authors have found that cancer patients use alternative therapies because they believe that their cancer could have been 17 prevented and therefore can be reversed (e.g., through diet), because they are dissatisfied with conventional practitioners and health care systems, or they want to use non-toxic treatment regimes (Cassileth et al. 1984). Encouragement from others has also been associated with use of alternative therapies by cancer patients (Yates et al. 1993). Some Canadian research provides additional insight into cancer patients' experiences with the use of alternative therapies. Gray et al. (1997) interviewed 32 cancer patients who had purchased "A Guide to Unconventional Cancer Therapies" published by the Ontario Breast Cancer Information Exchange Project (1994). Most respondents had used at least one alternative therapy with an average of four therapies per respondent. The therapies used most commonly were vitamins and minerals, meditation, visualization or psychotherapy, support groups, and specific substances such as Essiac, shark cartilage, echinacea, green tea, or 714-X. Many respondents had been interested in alternative therapies before their diagnosis and their interest typically peaked as their conventional treatment was ending and they were struggling with questions about how to live after treatment. The researchers' definition of unconventional therapy as any activity falling outside the mainstream was not compatible with some respondents' perspectives. Rather than perceiving their efforts to promote their own health as "using an unconventional therapy," some respondents saw these efforts as being just good common sense. Gray et al. (1997) refute Cassileth and Chapman's (1996) claim that patients' interest in alternative therapies is fuelled by a societal trend away from science and . reason and that such interest is indicative of magical thinking which falls into the same category as belief in angels and UFOs. We saw little evidence of such woolly-headedness during our interviews. What we did see was a willingness to draw on personal and shared 18 experiences as legitimate sources of knowledge. Although many respondents decried the lack of solid scientific evidence about unconventional therapies, this did not stop them from considering other forms of evidence. (Respondents) were perplexed and disturbed because health care professionals seemed to be interested only in the results of randomized clinical trials (1997:168). The Biomedical Response: Reluctance to Engage with C A M Several studies have found that the majority of patients do not discuss their use of CAM with their conventional physicians (Eisenberg et al. 1998; Richardson et al. 2000; Boon et al. 2000). A review of studies of the practices and beliefs of conventional physicians with regard to five prominent CAM therapies (acupuncture, chiropractic, homeopathy, herbal medicine and massage) identified a wide range of physician response to CAM, with the regional popularity of CAM being the primary indicator of physicians' incorporation of CAM (Astin et al. 1998). While some studies indicate that physicians express interest in learning about CAM (e.g., Verhoef and Sutherland 1995; Gray and Fitch et al. 1997), others suggest that conventional practitioners, especially those who treat cancer, are reluctant to discuss CAM use with patients (Cassileth and Chapman 1996; Ashbury et al, 1997; Gray et al. 1997; Fitch et al. 1999; Gray et al. 1998). The cancer patients interviewed by Gray et al. (1997) confirmed the view that physicians are reluctant to discuss CAM. These patients believed that physicians, especially oncologists, do not have much interest in alternative therapies. Some patients offered stories of seemingly remarkable recoveries from cancer and other conditions that their physicians had been unwilling to acknowledge as related to the use of alternative therapies. This finding is curious in light of the results of interviews with physicians done by the same research team that found stories to be powerful sources of knowledge for 19 physicians. The Canadian physicians interviewed by Gray and Fitch et al. (1997) said they wanted to avoid engaging patients in conversations about alternative therapies because of their concerns about the limited time available for patient contact, their sense that this topic was outside their expertise, and their belief that alternative therapies are not credible enough to warrant serious consideration. Gray and Fitch et al. observed that a substantial proportion of their physician respondents told stories of patients who experienced catastrophic consequences after using alternative therapies. These stories seemed to have a profound impact, often affecting the physicians' perceptions of the entire field of alternative medicine. The authors of the study raise an interesting point. We cannot help but wonder about the power of the "anecdotal", not just for patients pursuing the unconventional, but for physicians opposed to it. When research evidence shows that a minority of patients use unconventional therapies in isolation from conventional therapies and that most of the popular therapies are relatively non-toxic, it raises the possibility that anecdotal evidence has influenced physician perceptions of danger beyond what is realistic (Gray and Fitch et al. 1997:20). Several authors have pointed out the ethical dilemmas posed by patients' use of CAM given the need for conventional practitioners to help patients make informed choices regarding treatment and avoid harmful treatments (Chez and Jonas 1997; Eisenberg 1997; Sugarman and Burk 1998; Verhoef et al. 1999). The dilemmas are challenging. For example, on the one hand, conventional practitioners may be held liable for poor treatment outcomes if they have supported patients' use of CAM therapies (Verhoef et al. 1999). On the other hand, Cohen (2000) raises the spectre that conventional physicians may one day be sued for failing to provide patients with comprehensive information about CAM treatment options if CAM becomes integrated into the health care system. These ethical concerns as well as concerns about the quality 20 ofthe doctor-patient relationship have led to numerous calls for physicians and other conventional health care practitioners to discuss CAM use with patients in an open, non-judgmental way (e.g., Eisenberg 1997; Gray et al. 1998; Verhoef et al. 1999; Truant and McKenzie 1999; Burstein 2000; Tasaki et al. 2002). The Biomedical Response: The Call for Evidence The use of CAM and the issues it raises for the biomedical mainstream have also resulted in calls for research to determine the safety and efficacy of CAM treatments (e.g., Fontanera and Lundberg 1998; Verhoef et al. 1999). Critics of CAM demand that these therapies meet the standards of evidence purportedly used in biomedicine (e.g., Beyerstein 1997; Tannock and Warr 1998). Such critics also want the mechanisms of action underlying CAM to be comprehensible according to conventional scientific r reasoning (Beyerstein 1997). These calls for CAM's legitimacy to be assessed by scientific research come at the same time as conventional medicine is being challenged to make its practices more evidence-based (Willis 1999; Tataryn and Verhoef 2001). The fact that the majority of biomedical treatments have not been evaluated using the putative gold standard of science, the randomized controlled trial (RCT) (Gordon 1996; Vincent and Furnham 1997; Bower 1998; Tataryn and Verhoef 2001) coupled with the poor quality of much conventional medical science (Vincent and Furnham 1997) has prompted some to point out that a double standard is being applied. Dr. Iain Chalmers, the Director of the U.K. Cochrane Centre4 has stated, " The Cochrane Collaboration is an international effort to produce, maintain, and disseminate systematic reviews on all topics in health care. Two major products are a database of systematic reviews and a registry 21 These double standards might be acceptable if orthodox medicine was based solely on practices which had been shown to do more good than harm, and if the mechanisms through which their beneficial elements had their effects were understood, but neither of these conditions apply (Bower 1998). There are methodological difficulties that present obstacles to the evolution of evidence-based medicine, whether conventional or alternative (Tataryn and Verhoef 2001). For example, some alternative treatments (e.g., acupuncture or massage) and some conventional treatments (e.g., surgery) are not amenable to being tested under blinded conditions (Kelner and Wellman 2000). In addition, the choice of appropriate control conditions can be problematic. For example, the choice of an inactive control condition is difficult when the mechanism of action of the test therapy is not well understood (Margolin et al. 1998). For CAM treatments whose mechanisms of action do not fit within conventional ways of thinking (e.g., homeopathy or the various forms of "energy medicine"), this aspect of designing randomized controlled trials is especially difficult (Vincent and Furnham 1997). The situation is even more complicated for CAM treatments where the diagnosis and treatment are highly specific to each patient (e.g., TCM and Ayurveda) and where treatments consist of combinations of different substances or techniques (e.g., TCM herbal prescriptions usually contain 5—10-ingredients) (Kelner and Wellman 2000). Some authors argue that RCTs do not provide an adequate test of approaches like TCM because attempts to standardize treatments or isolate active ingredients violate the principles of the medical system and hence do not test the system as it is practiced (Eskinaze 1998; Eastman 1998). These difficulties have prompted recommendations to develop innovative ways to adapt conventional research designs so they do justice to the assumptions and characteristics of CAM (Hilsden and of controlled trials. To meet increasing demands for evidence-based complementary medicine, the 22 Verhoef 1999) and to use qualitative research methods to explore important issues-besides efficacy (e.g., the meaning patients give to treatments and the outcomes patients consider important) (Hilsden et al. 2002). The methodological challenges in CAM research, in combination with the small amount of funding available for CAM research (Ernst 2000) and the marginal status of CAM research (Vincent and Furnham 1997), have limited the development of a body of knowledge regarding CAM treatments. Nevertheless, as of 1998, the Cochrane Collaboration had identified more than 3500 RCTs related to alternative medicine (Ezzo et al.1998). Despite this body of research, a recent review of the evidence base for CAM concluded that except for the proven benefit of several herbal remedies, the "jury is still out" on CAM (Ernst 2000). Similarly, Furnham and Vincent conclude that there is "very . little or no good evidence . . . available for the therapeutic success of CAM" (2000:61). Further, a recent survey of studies focusing specifically on CAM therapies for breast cancer found a lack of evidence for the efficacy of CAM therapies (Jacobson et al. 2000). The methodological difficulties inherent in CAM research and the apparent lack of demonstrated efficacy reinforcethe view that CAM's scientific legitimacy has yet to be proven. In this time of abundant rhetoric about evidence-based medicine, this might suggest that CAM's position is tenuous. However, there are some who are questioning the push to evidence-based medicine, whether it applies to CAM or conventional medicine. For example, there is evidence that conventional physicians do not practice according to the findings of science even when these are available (D Gordon 1988a; Tataryn and Verhoef 2001).. Further, there are those within biomedicine who question the epistemological foundations of the RCT as well as pointing out the ethical and practical Cochrane Collaboration established a complementary medicine field in 1996 (Ezzo et al. 1998). 23 flaws inherent in this "gold standard" of research (e.g., Herman 1995). In addition, as different RCTs produce ambiguous or even contradictory results, the question has been raised as to whether evidence-based medicine simply replaces the judgments of skilled clinicians with those of expert epidemiologists (Goodman 2002). In this atmosphere of controversy about evidence-based medicine, instead of CAM's position being weak, the field is gaining momentum. CAM textbooks aimed at physicians are being published (e.g., Jonas and Levin 1999; Kirkaldy-Willis and Swartz 2001), as are handbooks describing how to integrate CAM into biomedical health care settings (e.g., Faass 2001) and advice for physicians about the legal and ethical implications of integrative health care (Cohen 2000). At least for some in the biomedical mainstream, pragmatism seems to be overtaking concerns about evidence. As one oncologist wrote in a recent editorial comment, Today the academic medical world in general and the academic field of oncology in particular are in a rather remarkable position where forces in , society are demanding that alternative/complementary medicine be investigated and certain interventions be incorporated into standard medical practice. . . . What is increasingly certain is that individuals and groups who claim the benefits of a large number of alternative/complementary interventions in cancer management cannot be ignored (Markman 2001:52). The CAM Response: The Call for Integration As noted previously, the use of CAM by the public has prompted calls for CAM to be integrated into conventional medicine. These calls have come from proponents of CAM (e.g., Gordon 1997; Weil 1995) as well as from practitioners and researchers whose allegiances are less obvious (e.g., Advisory Group on Complementary and Alternative Health Care 2001). Discussions of what integration should look like have begun to appear in the literature (e.g., Advisory Group on Complementary and Alternative Health 24 Care 2001; Tataryn and Verhoef 2001; Faas 2001) as have discussions of some of the pitfalls, of integration. Jonas (1998) provides a historical perspective on previous processes whereby unorthodox therapies have become "integrated." First, orthodox medicine denounces unorthodox therapies, labeling them unscientific. However, when these therapies persist despite these attacks, orthodox medicine becomes more accepting of these other approaches, identifying their similarities with orthodox practices and incorporating them into the conventional practice of medicine. This process is not always beneficial for those who become integrated. In their attempts to gain legitimacy, practitioners often find their scopes of practice limited, their practice brought under the oversight of medical doctors, and their ideologies medicalized. This kind of co-optation has occurred with acupuncture (Berliner 1984) and with midwifery (Bourgeault and Fynes 1997). The integration of CAM could also mean the loss of some of its philosophical tenets such as the emphasis on self-healing (Jonas 1998). Despite these potential pitfalls, the "CAM Industry" is gaining ground (Goldstein 1999; Faas 2001). As Weeks (2001) notes, some of the proponents of integration are former biomedical physicians and administrators whose personal interest in CAM has prompted changes in their professional lives. Such leaders are being characterized as "culturally bilingual" or "hybrid" professionals. These leaders are pushing for integration even though initial attempts to integrate CAM have encountered difficulties related to the convergence of disparate paradigms (Weeks 2001). The push for integration, especially in jurisdictions where private health care is a strong economic force, such as the U.S., is 25 being driven by the economic opportunities arising from the public's interest in CAM (Weeks 2001). The studies cited in this chapter indicate that public interest in CAM approaches to healing is significant. Some of these approaches are fundamentally different from biomedicine, especially those that originate in non-Western cultures. While patients' use of CAM is growing and CAM proponents are advocating for the integration of these treatments into health care, conventional medicine is responding with caution. The question of whether CAM treatments are legitimate, i.e., whether they are reasonable, whether their use is justified, and whether they conform to accepted standards, has important implications both for individuals and for Canadian society. In order to bring clarity to the issues raised by the convergence of conventional medicine and the variety of healing approaches labeled as CAM, this dissertation focuses on the ways that individuals legitimize different approaches to healing through their engagement with cultural and social forces. In the next chapter I discuss the sociocultural context surrounding questions about CAM's legitimacy and identify the perspectives from the social sciences that have guided my research. 26 Chapter Two Social and Cultural Aspects of CAM's Legitimation Introduction This chapter describes the social and cultural changes that have been identified as being associated with the presence of Complementary and Alternative Medicine (CAM) in Western society. The perspective on CAM offered by the social sciences illuminates the historical and political aspects of shifts that occur in medical legitimacy. While the current level of public interest in CAM might be new, the authors whose work is cited in this chapter show that the contestation of the legitimacy of different approaches to healing is not. In addition to elucidating the cultural and social dimensions of questions about medical legitimacy, the social sciences also provide useful conceptual lenses through which processes of cultural and social legitimation can be understood. This chapter describes the concepts from anthropology and sociology that have been used as conceptual reference points throughout the dissertation. 2 7 Sociocultural Forces Associated with Interest in C A M It is useful to consider the current academic and public interest in CAM in light of the history of medicine. Starr's (1982) analysis of the evolution of medicine in the U.S. shows that the boundaries between orthodox and unorthodox medicine have shifted significantly at various times. The publication of the Flexner Report in the U.S. in the early part of the 20th Century resulted in a coalescing of medical power and influence around the emerging concepts of scientific medicine. This report brought about changes in medical education as well as creating new connections between medical science and clinical practice. Biomedicine became the norm while competing medical practices such as homeopathy and chiropractic became marginalized. Generally, such shifts in medical power are associated with several factors, including the development of new knowledge, changing attitudes and customs within medical circles, processes of professionalization, larger social and economic changes, and the use of strategies such as political lobbying and legal prosecution aimed at establishing and maintaining the dominance of one school of thought over others (Starr 1982). Saks (1992) describes similar shifts in medical orthodoxy in Britain. A detailed analysis of the history of medicine in Canada has not been published, but one description of the state of medicine in Ontario in the last half of the 19th Century shows that medical pluralism was as prevalent in Canada during the Victorian period as it was in the U.S. (Connor 1997). However, there were subtle but significant differences between the medical cultures in the two countries. The rivalries among schools, practitioners, and sects did not reach the extremes in Ontario that were reached in the U.S. (Connor 1997). These historical perspectives are important for two reasons: they 28 ( point out that competition among different medical approaches for legitimacy is an ongoing phenomenon and that, although the current situation with respect to CAM in Canada may be similar to the situation in the U.S., it would be a mistake to assume that no significant sociocultural or political differences exist. Even though biomedicine has enjoyed a hegemonic position in North America since the beginning of the last century, some authors contend that, at the present historical moment; Western biomedicine is in crisis. They observe that while biomedicine itself moved from the fringe to the centre in the early part of the 20th Century, its power is now in decline (Bakx 1991; Coburn and Willis 2000). Criticisms that threaten the hegemony of biomedicine come from several sources. A "medicalization critique" emerged from the liberal humanist and Marxist perspectives of the 1960s and 1970s (Lupton 1997). Early critics of scientific medicine argued that medicine had gradually accrued the power to define and regulate crucial aspects of social life and thus had become an agent of social control (e.g., Friedson 1970; Zola 1972; Foucault 1973). In addition, it was asserted that, rather than contributing to improved health in the population, modern medicine had undermined it by creating iatrogenic illnesses and by disempowering patients (Illich 1976). Further, the credibility of the medical profession was challenged in the 1970s by evidence that very little of the long-term health gains of populations was due to clinical medicine, that many tests and procedures were not necessary or beneficial, and that medical practices varied widely for reasons unrelated to clinical factors (Light 2000). Biomedicine has also been criticized for. focusing on physical disease to the exclusion of important social and cultural factors such as the meaning of the illness 29 episode to the patient and its effect on social relationships (e.g., Kleinman 1980 and 1995; Good 1994). Some authors argue that the combination of these problems has resulted in a loss of trust in the medical profession (Williams and Calnan 1996; DelVecchio Good and Good 2000). Other authors note that biomedicine has been weakened by its failure to achieve the advances it has promised. For example, Bakx (1991) states, "Biomedicine has become hoisted on the petard of its own propaganda" (31). The lack of progress in "the war on cancer" after thirty years of effort is especially noteworthy. A report by Bailar and Gornik (1997) on cancer mortality in the U.S. in the period from 1970 through 1994 concluded that, while intense research efforts had brought about some benefits (e.g., improved outlooks for children and young adults with cancer, better treatment for Hodgkin's disease, more effective palliation of some advanced cancers, and a better understanding of cancer which has contributed to improved care for other diseases like HIV), the impact of this research on overall cancer mortality has been disappointing. Some authors attribute increasing public scepticism about biomedicine to the influence of postmodernism and its criticisms of modernity in general and the institutions of science and medicine in particular (Bakx 1991; Williams and Calnan 1996; Coburn and Willis 2000). It has been noted, however, that despite being disillusioned, the public (somewhat paradoxically) continues to remain hopeful about the next scientific discovery (Crawford 1980; Bakx 1991; Lupton 1994; Fox 2000). The decline in biomedical hegemony has also been attributed to large-scale social changes, including globalization, corporatization, the rise of neo-conservatism and attacks on the welfare state (Coburn and Willis 2000). This social context provides fertile 30 ground for competing medical approaches: knowledge about medical systems from other cultures is now widely distributed; big corporations have begun promoting alternative health products; and discourses around individual responsibility for health and consumer choice are prominent (Goldstein 1999). The public interest in complementary and alternative medicine is seen by some as a social movement (Salmon 1984; Lowenberg 1989; Johnston et al.1994; Crellin et al.1997; Willis 1999). The CAM movement has been linked with other social movements ofthe last four decades, including the counterculture of the sixties, feminism, the peace movement and the environmental movement (Salmon 1984; Lowenberg 1989; MacCormack 1991; Johnston et al. 1994; Scheirov and Geczik 1996). The strength of , alternative medicine has also been seen as associated with trends towards consumer empowerment (Lowenberg 1989), which have been partly fuelled by the increased availability of specialized, scientific information through media such as the Internet (Cassileth and Chapman 1996; Williams and Calnan 1996). Lessons from Previous Ethnographic Inquiries into C A M It is clear that the relationship between biomedicine and CAM is complex and influenced by many cultural, social, and political factors. It is curious, therefore, that most research into CAM focuses on the medical aspects of these approaches to healing and neglects the social context. There has been relatively little empirical social science research aimed at developing an in-depth understanding of the issues that arise at the interface between biomedicine and CAM. The small number of published ethnographies of settings where alternative therapies are being used illustrate the complexity of the issues that warrant 31 further investigation and show how ethnographies can contribute to an understanding of these issues. CAM Users Want More than Biomedicine Offers McGuire (1988) did an exploratory investigation of the use of non-biomedical approaches to healing by groups of middle class people in suburban New Jersey. Her research team conducted 313 open-ended interviews with members of nontraditional healing groups and did participant observation in 31 different groups that were categorized into five belief-system types: Christian healing; Eastern meditation and human potential groups; traditional metaphysical groups; psychic/occult groups; and manipulation/technique practitioners (e.g., chiropractic, acupuncture, Shiatsu, rolfing and reflexology). Groups were selected from the more than 130 healing groups identified in the study catchment area for their representativeness of a type of healing group, their geographical accessibility, and their willingness to participate in the study. After doing participant-observation for a year, McGuire and her team conducted personal interviews with more than 300 individuals who were members of a healing group and who were perceived to have special healing abilities, who had experiences of healing, or who had varying levels of commitment to the group. McGuire found that less than one percent of respondents involved in alternative healing rejected medical treatment altogether. Her respondents showed considerable respect for the medical profession, although they tended to see biomedicine as one among many potential avenues of healing and saw themselves as active participants in the healing process, not passive recipients of care. McGuire concluded that alternative healing emphasized a 32 transformation of the self, one that runs counter to biomedical practices. By treating illness as connected to spiritual concerns, those involved in alternative healing delegitimized the dominance of the medical profession. McGuire speculates that proponents of alternative therapies, being well-educated and articulate, may provoke cultural and sociaLchange. But she questions whether the interest in alternative therapies will substantially change the social and economic order or whether, instead, alternative philosophies will be co-opted by more dominant forces such as consumerism. McGuire's work is insightful and thorough. The issues she identifies as crucial are still relevant today. CAM Expands the Moral Dimensions of Illness Lowenberg (1989) did participant-observation in a small number of holistic health centres in California. She also conducted personal interviews with practitioners and patients in these settings. Lowenberg's primary research site was a holistic family practice clinic staffed by physicians, nurses, and psychologists. These practitioners were traditionally trained, but had developed a holistic, preventive orientation that they saw as significantly different from conventional medical practice. In the discussion of her findings, Lowenberg focuses on moral and social issues related to the ways in which responsibility for illness is attributed. She argues that, to some extent, the trend in conventional medicine has been to absolve patients from responsibility for illness. The medicalization of mental illness and alcoholism provide examples: whereas both were seen at one time as deviance arising from moral weakness, they now are viewed as illnesses which require medical, not punitive, treatment. Moral questions surrounding 33 illness can, however, still be seen in the discourse of conventional medicine: the current emphasis on lifestyle choices demonstrates the continuing influence of the notion that illness is a reflection of "badness." ' According to Lowenberg, the ideology of the holistic health movement significantly expands the moral dimensions of illness. Building on the presumed interconnection between mind and body, the rhetoric asserts that illness is caused by the individual's mental or emotional state. Patients are thus responsible for their illness. The more extreme versions claim that individuals choose their illness, including its form and severity. For example, the Simonton approach to cancer treatment recommends that patients contemplate the reasons why they need their cancer (Simonton et al. 1978). This kind of approach has come under considerable criticism because it "blames the victim" (Lowenberg 1987). Lowenberg's empirical work showed that there were considerable differences between the rhetoric of the holistic health movement and the behaviour of its adherents. She found that holistic physicians tried to absolve patients from responsibility using strategies comparable to those used by conventional physicians. For example, practitioners used several theoretical "outs" to avoid attribution of blame, including the beliefs that illness is affected by unconscious or learned processes, and that health-related behaviours are affected by social and cultural factors (Lowenberg 1987). Lowenberg's interviews with patients showed that some patients did express guilt and self-condemnation because of their ill health, but that patients nevertheless believed in the holistic rhetoric because it gave them some sense of control over their illness. Lowenberg concludes that holistic health does medicalize new domains of life, but that it 34 also reduces medical control by encouraging egalitarian patient-practitioner relationships and patient responsibility. However, it achieves this latter benefit at the cost of increasing punitive moral sanctions against individuals who become ill (Lowenberg 1987). Lowenberg's study provides useful insights into the ways in which patients and professionals integrate the rhetoric about individuals being responsible for their illnesses into their own beliefs and behaviours. Her research highlights some of the issues raised by this particular belief, but it elucidates only one aspect of holistic or alternative health beliefs as they are expressed in one kind of setting. There are many more issues to be explored. ;~ Biomedical Biases Limit the Utility of Research into CAM Some of these issues have been explored by Montbriand in her ethnographic studies of the use of alternative therapies by Canadian cancer patients. Montbriand has published articles on how patients make decisions about alternative therapy use (Montbriand 1995b), whether the use of alternative therapies represents an attempt to assert control over one's health (Montbriand 1995a), and what themes are expressed in the stories of patients who choose to use alternative therapies instead of conventional ones (Montbriand 1998). Unfortunately, these studies are of only limited value. While Montbriand claims that her analysis "does not endorse either side of the controversy surrounding alternative health practices" (1995a:646), her biomedical bias is both pervasive and obvious. For example, Montbriand asserts that it is important to understand why patients use alternative therapies for many reasons: "some being the possible dangerous side-effects of alternates or the delay of biomedical treatments, (but) probably 35 the most important is the alternate system's tendency to exploit patient decision strategies for marketing purposes" (1995b:104). In her 1998 article, Montbriand argues that the reason why it is important to understand why patients "abandon" biomedicine is so that health professionals can "facilitate a return of these patients to biomedicine" (1998:36). Experience Counts in Decision Making Another ethnography (O'Connor 1994) takes a more neutral approach. The author applies the same investigative stance to both conventional medicine and alternative medicine— what she calls "vernacular" health belief systems. O'Connor considers both vernacular approaches to health and conventional scientific approaches as having their foundations in a belief system. O'Connor (1994) argues that previous considerations of alternative medicine have tended to ignore the diversity of epistemological underpinnings on which different health beliefs rest. Further, she asserts that researchers too often assume first, that biomedical epistemologies and practices are the norm against which other systems should be evaluated and second, that users of alternative therapies must be either ignorant of conventional medicine's benefits or blocked in some way from accessing them (O'Connor 1994). O'Connor's cross-cultural research and her research with HIV/AIDS patients in an urban area in the northeastern U.S. show that patients make pragmatic decisions about health care based on a wider range of knowledge than that usually encompassed by the conventional health system. Patients rely on the authority of their own knowledge and experience, the experiences and assertions of other legitimized authorities such as friends, family members, or alternative healers, as well as on the basis of scientific 36 evidence. When different belief systems produce different choices about health care, these differences result more from a reliance on different assumptions, different criteria for the admission of evidence, and different interpretations of observations than from fundamentally different ways of reasoning. O'Connor notes that many of the people she . interviewed indicated that, "They (referring to scientists and health professionals) may not know that this (system or treatment) is effective, but /do." (1994:163). The lack of scientific evidence seldom was a deterrent to the use of alternative therapies because r patients were aware that little such research had been undertaken. Patients perceived science to be one possible source of information, but not the only one. Their own personal experiences were also considered to constitute trustworthy empirical evidence. O'Connor concludes that, If a disagreement arises between (the patient) and another (say, a health professional or an academic) who considers the system to be ineffective or its mechanism of action impossible on grounds of theory, personal experience will always hold the evidential and epistemological high ground for the experiencer (1994:163). O'Connor's scrutiny of both conventional and alternative medicine through the same analytic lens is refreshing in a field that tends to assume that conventional medicine is the norm against which other approaches should be judged. In addition, her observation that the use of alternative medicine by HIV/AIDS patients has elements of being a social movement is another valuable contribution to the examination of CAM. CAM as a Social Movement Another ethnography focuses almost entirely on the social movement dimensions of alternative therapy use. Schneirov and Geczik explored alternative health networks in a 37 northeastern U.S. city (1996 and 1998) using participant-observation and semi-structured interviews with 38 alternative practitioners, patients, and activists. Their research found that the alternative health movement includes diverse communities, from conservative Christian fundamentalists to left-leaning liberals (1996). The authors found that, while the various elements of the movement differed with respect to some of their values and the way they talked, dressed, and interacted with each other, they shared common allegiances and perspectives. Alternative health adherents from across the spectrum criticized conventional medicine for its reliance on invasive, unnatural treatments and its neglect of dimensions of life beyond the physical. In addition, adherents advocated personal freedom of choice in health care and rejected the excesses and lack of meaning in modern, consumer-oriented society (Schneirov and Geczik 1996). According to Schneirov and Gezcik (1996), participation in the alternative health movement is a way of adopting new identities and meanings as well as a form of resistance to the "colonization of the lifeworld" 1 by state institutions. Drawing on the work of Foucault, Schneirov and Gezcik (1998) further argue that the ideologically-driven focus of alternative health regimes on the production of a healthy, vibrant body is an aesthetic project which removes the adherent from the supervision of conventional medicine. They see this aesthetic project as not only stimulating the transformation of everyday life but also as providing an impetus to participate in social action designed to provoke significant changes in economic and political structures, particularly structures that contribute to environmental degradation. They conclude, 1 This term was coined by Jurgen Habermas. 38 The alternative health movement's significance may be in its reconstruction of the meaning of illness beyond a narrow medical category. . . . Illness becomes both a representation of the increasing risks of modern societies and the source of bodily and self-transformation that points to other possible worlds. The body both means something and allows us to do something (Schneirov and Gezcik 1998:449). Schneirov and Gezcik's articles (1996 and 1998) provide an important perspective on alternative therapy use. By examining the social and cultural aspects of alternative therapy use, it provides a counter-point to the biomedically-oriented literature that tends to focus on the individual patient. However, both articles are highly interpretive, using post-structural, postmodern theoretical frameworks to organize the discussion of the data. It is difficult to assess the appropriateness of the authors' interpretations without having access to more of the ethnographic data. This dissertation research aims to build on the understandings provided by these ethnographies. It provides an in-depth look at the lived experiences of those who are participating in the convergence of biomedicine and CAM. Many authors have noted that such research is long overdue (e.g.„Lowenberg 1989; O'Connor 1994; Cant and Sharma 1996). There is a significant need for inquiries into the relationship between the experiences of individuals and changing sociocultural discourses related to health and illness (Lupton 2000; Kleinman and Seeman 2000). It is crucial to consider the growth in CAM within the context of culture (Adler 2002). Not only is culture a critical mediating influence in health care systems (Kleinman 1995) but ethnographic approaches that situate CAM use within social and cultural contexts have the potential to clarify some of the conceptual issues related to the field. This need for increased conceptual clarity has been identified as a priority for Canadian health policy research (; accessed July 2002). 39 Legitimation as the Focus of Inquiry -This dissertation focuses on the ways in which the legitimacy of CAM is socially and culturally constructed. Whether explicitly stated or not, the question of whether CAM is "legitimate" is central to the current academic interest in CAM, as well as to the questions individuals face about whether and how CAM should be integrated into their treatment regimes. The concept of legitimacy and the processes whereby values, beliefs, and practices become legitimized have been discussed by sociologists for decades. Talcott Parsons conceived of processes of legitimation as "the primary link between values as an internalised component of the personality of the individual, and the institutionalised patterns which define the structure of social relationships" (Parsons 1960:173). According to Parsons, the perceived legitimacy of a belief or action depends on the content of the belief or the nature of the possible act, the nature and strength of its cognitive justification, the actor's motivation, and the nature of the social context (Parsons 1960). The determination of legitimacy then, is a function of the interplay between an individual's values, beliefs, and interests and those of social groups, including formal institutions that are intended to safeguard collective interests. Parsons asserts that subcultures or social movements that deviate from the norm but seek legitimation within the dominant sociocultural context must convince themselves and others of the validity of their own interpretations of cultural value systems and ideologies. Traditional institutions must then be delegitimized with reference to those shared cultural beliefs and values. Tension is inherent in this process. The 40 process tends to be characterized by oversimplification and the exaggeration of black and white oppositions (Parsons 1963). The role and legitimacy of alternative medicine, defined generically, has been a subject for public debate since the 1960s (Cant and Sharma 2000). Since the time of the Flexner Report, biomedicine's legitimacy has arisen primarily from its links to scientific inquiry and experimentation (Starr 1982). The primary claim of CAM's critics is that non-biomedical approaches lack a scientific base (Cant and Sharma 2000). However, some so-called "alternative" approaches have been incorporated, at least to some extent, into, biomedicine (e.g., osteopathy, chiropractic, and acupuncture) (Berliner 1984; Jonas 1998). This has occurred despite the lack of a strong scientific base for these approaches. The incorporation of these approaches in different jurisdictions has shown that biomedicine has changed its stance on specific CAM approaches depending on whether the modality is seen as a threat to biomedical dominance and whether it can be incorporated without a major redefinition of biomedicine's legitimacy and its role as the arbiter of medical legitimacy (Cant and Sharma 2000). There are some signs that the public popularity of CAM may prompt governments to bestow some of the elements of legitimacy (e.g., professional status) to CAM approaches despite a lack of scientific evidence and despite biomedical scepticism (Cant and Sharma 2000). For example, in 1998, the British Columbia provincial government created a self-regulating professional College of Traditional Chinese Medicine practitioners, despite questions raised by biomedical organizations (e.g., the College of Physicians and Surgeons and the College of Dental Surgeons) about the epistemological basis for TCM practices. The government decided that the unique theory and 41 philosophical base of TCM coupled with its roots in clinical experience substantiated by extensive textual sources satisfied the criteria for a profession to be grounded in a credible body of knowledge. Further, in a bold policy move given the controversies surrounding CAM, the Health Professions Council stated that it did not deem it appropriate or necessary to reconcile the theories of TCM with the ontology and epistemology of Western medicine (Chisolm et al. 1998). The increasing professionalization of CAM therapies and increasing similarities in the training received by biomedical and CAM practitioners is contributing to the legitimacy of CAM (Cant and Sharma 2000). Saks (2000) notes that while professionalization implies the creation of boundaries and that it was the professionalization of biomedicine that created CAM as an entity external to biomedicine, these boundaries are shifting. As noted earlier, not only are CAM approaches increasingly seen as having legitimacy, but biomedicine's legitimacy is being questioned. As Williams and Calnan note, "A critical re-configuration of professional power and dominance is beginning to take place" (1996:1618). Investigating the Social Construction of Legitimacy As noted above, processes of legitimation link individual values and collective social , practices and institutions. In postmodern academia it has become commonplace to characterize concepts, values, belief systems and institutions as socially constructed. But how can the social construction of legitimation processes be understood? There are authors who speak of a legitimation crisis within academia itself: this refers to the postmodern undermining of the authority of positivist claims to knowledge (e.g., Gergen 42 1999; Denzin 1997). The relative, situated, context-dependent nature of knowledge and meaning is being emphasized in much social science discourse. These discourses demand investigative approaches and conceptual frameworks that focus on the contextualized particular, on processes of personal and cultural change, and on the making of meaning. In order to understand the ways in which the legitimacy of CAM is socially constructed, this dissertation uses the concepts of cultural models and situated meanings to guide the inquiry. The notion of cultural models is widespread in anthropology. Cultural models are both public, in that they represent the shared common-sense understandings of a people and the embodiments of their language, and cognitive, in that they function as paradigms for constructing the world. Cultural models are not presented in everyday speech and action. Rather they are "represented in fragmentary, surface facets. We must infer the more coherent, if unarticulated, models that lie beneath (as we infer native actors must, in learning them)" (Keesing 1987:373-374). In their efforts to understand the links between culture and experiences of health and illness, medical anthropologists such as Arthur Kleinman and Byron Good use the concept of "explanatory model" first, to point to the cultural forces underlying definitions of disease and second, as a point of entry into the experience of illness. Explanatory models concern the ways in which an illness episode is interpreted and understood. They show how illness is constituted by cultural beliefs and practices. These models provide meaning to experience and hence, they are inherently moral formulations. Explanatory models reflect and are changed by interactions among the person who is ill, his/her caregivers, and others in the three health care arenas identified earlier: the popular, the . 43 professional and the folk sectors. Such models are thus intersubjective and reflective of medical and social power relations (Kleinman and Seeman 2000; Good 1994). Anthropologists and other social scientists have struggled to explain how cultural models are learned and how such models change. For example, D'Andrade theorizes that cultural models are made up of cognitive schemas2 used "to represent something, to reason with or to calculate from by mentally manipulating the parts of the model to solve some problem" (1995:180). D'Andrade points out that cultural knowledge is both shared and distributed, i.e., there are aspects of cultural knowledge that enjoy a high degree of consensus and other knowledge systems that are contested. He also points out the important link between cultural models and individual psychological processes, e.g., the effect of motivational differences on the adoption or rejection of a cultural model. He notes that, much of the current work on power and discourse in anthropology is concerned with problems related to the psychological force of cultural models—debates over what is natural and right. In modern pluralistic societies the cultural heritage contains many alternative and even conflicting cultural models about how things are and how one should act. . . . Cultural models become part of social conflict and social processes by which laws are constructed, norms are established, and deviance is controlled—or fails to be controlled (D'Andrade 1995:242). Sperber (1996) also emphasizes the role of psychological factors such as motivation in the distribution of cultural models. In addition, he points out the importance of what he calls ecological factors, e.g., the recurrence of situations in which the cultural model or representation leads to appropriate action, the availability of external memory cues (especially written texts), and the existence of institutions that transmit particular models. Sperber maintains that culture is made up of "contagious". 2 A schema is an organized framework that can be filled in by the concrete details of experience. 44 ideas and that the human mind is susceptible to cultural models in the same way the body is susceptible to disease. He advocates for an "epidemiology of representations" that would explain culture by explaining why and how some ideas happen to be contagious. These ideas about cultural models and their role in sociocultural change obviously have relevance to the question of how unconventional approaches to healing come to be seen as legitimate. They provide a conceptual reference point for this dissertation. The next chapter outlines the rationale for using an ethnographic approach to the research and describes the specific research methods used. 45 Chapter Three The Ethnographic Approach to the Research Introduction This chapter describes the research methods used in the dissertation. An ethnographic approach was used for several reasons: because ofthe complexity of the issues that were explored; because of the critical role that social and cultural factors play in the construction of legitimacy and the paucity of previous empirical research that considers the issues within their social and cultural context; and because of the lack of conceptual clarity about the research issues. This chapter begins with a description of my approach to the ethnography. I then outline my own particular position with respect to the research issues. These sections are followed by a statement of the dissertation's objectives, a description of the fieldwork setting, descriptions of the methods of data collection and analysis, and a discussion of ethical considerations. The chapter closes with a discussion of the strengths and limitations of the research. 46 M y A p p r o a c h to the E t h n o g r a p h y The Cri t ical-Interpret ive Approach Ethnography can be characterized as a form of research that includes several key features: a strong emphasis on exploring the nature of particular social phenomena; a tendency to work primarily with data that have not been collected in relation to a pre-determined set of analytic categories; the investigation of a small number of cases; an analytic process that involves explicit interpretation of the meanings and functions of human action; and the creation of an end result that is primarily descriptive and explanatory (Atkinson and Hammersley 1994). According to James Clifford, Ethnography is actively situated between powerful systems of meaning. It poses its questions at the boundaries of civilizations, cultures, classes, races, and genders. Ethnography decodes and recodes, telling the grounds of collective order and diversity, inclusion and exclusion. It describes processes of innovation and structuration, and is itself part of these processes. (Clifford 1986:2-3). . . . The goal of the ethnographer is to link local knowledges, i.e., the emic, contextualized understandings of research participants, with more abstract, etic interpretations which i reveal what is generic to the conceptual structure underlying those understandings (Geertz 1973 and 1983). While ethnography has traditionally been associated with the discipline of anthropology, it is increasingly being used in interdisciplinary research where "culture" has become problematized as an object of description and critique (Clifford 1986; Marcus 1998). Ethnographic data are traditionally obtained primarily through participant-observation and interviews (Emerson et al. 1995); some ethnographers also use social texts (e.g., popular literature or cinema) as sources of data (Denzin 1994). 47 In my dissertation research I have attempted to draw on the traditional strengths of the ethnographic approach while incorporating insights developed through debates among social scientists about the need for social science to be critical, reflective, and mindful of the power dynamics inherent in social and cultural systems (Clifford 1986; Marcus and Fisher 1986; Lather 1991; Denzin and Lincoln 1994; Behar and Gordon 1995; Singer and Baer 1995; Denzin 1997; Marcus 1998). Such critical reflexivity is especially important in investigations of medical settings or health care systems (Good 1994). My research has been undertaken from the perspective of a critical-interpretive approach in medical anthropology that builds on the model of health care as a cultural system.outlined in chapter 1. This perspective has been described in detail by Byron Good (1994). Good agrees with Kleinman (1987) that culture is not only a means of representing disease but is essential to its constitution as a lived experience. The biological reality of disease interacts with social practices and cultural meanings to shape the illness experience. This shaping occurs in local settings where power is being contested. As Keesing noted in his discussion of cultural models, Cultures do not simply constitute webs of significance, systems of meaning that orient humans to one another and their world. They constitute ideologies, disguising human political and economic realities .... Cultures are webs of mystification as well as significance (Keesing 1987:161). Given this tendency for culture to both reveal and obscure, Good argues that critical medical anthropology must examine instances when illness representations may actually be misrepresentations that serve the interests of those in power. Such a critical analysis investigates the ways in which the experience of illness is produced, medical knowledge is generated and power relations reinforced. Good advocates that research using this approach should focus on the formative processes through which illness is shaped as ' 48 personal and social reality. This approach should heighten our understanding of illness experiences and the ways in which actors make sense of those experiences while critically analyzing the social and historical processes of which actors may be only dimly aware. But attending to issues of power is not enough. We must also open up social science discourse to existential issues and to the consideration of human values, including being aware of the centrality of suffering in human culture (Good 1994). With this critical-interpretive approach providing a set of orienting principles, my ethnographic fieldwork followed a model for ethnographic research discussed by George Marcus (1998). Unlike traditional ethnographies that focus on one geographically-bounded community or culture, this model focuses on specific topics or problems. The ethnographer follows the problem to whichever sites or locations provide fertile ground for study. This multi-sited model uses the traditional methods of ethnography but allows for a different "research imaginary"—a different way of formulating research ideas and conceiving of fieldwork (Marcus 1998:10). My dissertation research, with its focus on controversial issues and its location within contested domains of knowledge and power, has required the kind of critical-interpretive approach advocated by both Marcus and Good. Marcus (1998) points out that, while traditional ethnographies studied subjects foreign to the researcher (the "Other"), newer forms prompted by critical hermeneutics are often motivated by the personal interests of the researcher. While emphasizing the need for the researcher to develop distance between the personal and the social, i.e., to project the personal problematic to a more objectively defined subject, Marcus argues that "the extended exploration of existing affinities between the ethnographer and the subject of study is i 49 indeed one of the most powerful and interesting ways to motivate a research design" (Marcus 1998:15). In keeping with the growing practice for ethnographers to make explicit their positions, values and biases with respect to the issues they are investigating, the next section describes my motivations for undertaking this research, beginning with a narrative outlining my own experiences as a site of convergence between biomedicine and CAM. M y Interest in the Research Issues My grandfather was a doctor who became British Columbia's first coroner. I was raised on heroic stories about my grandfather in his horse and buggy with his black bag at his side, traveling through the Fraser Valley to deliver babies, tend the sick and care for the dying. The cultural model that was instilled through these stories was that medicine was a sacred calling, that doctors were worthy of the highest respect, even reverence. In early adulthood, through my undergraduate and graduate studies in Psychology, positivist ways of thinking and representing the world became deeply ingrained. As a result of these influences, some aspects"of my thinking about science and medicine became strongly aligned with conventional Western perspectives. At the same time, during my undergraduate studies in the late 1960s, I was introduced to Eastern religions and became strongly attracted to Taoist and Buddhist worldviews and practices. I also became involved in the feminist movement. When I was in my mid-twenties I was told I might have cancer. Because of my newfound feminist perspectives on patriarchal institutions, my sympathy for Eastern 50 views on illness being a sign of disharmony in one's life, and my adoption of what were then counter-cultural views on the superiority of "natural" ways of living, I went looking for alternatives to the conventional options I was facing. Eventually, diagnostic tests showed that I had a thyroid dysfunction not cancer. I took the recommended conventional drugs for a while but I also began practising yoga and meditation and eating a vegetarian diet. In addition, I made radical changes in my lifestyle.1 Several years later, I worked within the conventional cancer care system as the administrator of the Vancouver Breast Screening Centre, part of the National Breast Screening Study (NBSS), a national randomized controlled trial of the efficacy of mammography screening. During my time in that position (three and a half years) I became a biomedical insider to some extent. I saw people working in the system who displayed enormous caring and commitment towards patients and families. I also saw professionals make potentially life-threatening mistakes, sometimes through no fault of their own, sometimes through incompetence that was kept hidden by their peers. I saw a strong allegiance to science and a profound respect for the value of clinical experience, including, in some quarters (especially among nurses) a willingness to rely on intuition as a basis for decision making. I became aware that clinical decision making is fraught with ambiguity. After I had left the cancer clinic and the NBSS had finished, I saw a response to the results of the study that surprised me. Before beginning the public speaking I did to recruit participants for the study, I had been coached to describe the NBSS as being the only way to definitively answer questions about whether to offer mammography 11 left my husband, quit my job, packed up my Volkswagen van.and headed to the Maritimes to go "back to the land." 51 screening and at what age such screening should begin. The rhetoric claimed that doing the science and measuring the death rate was the only way to know whether population screening was a worthwhile health policy strategy. However, when the results of the study were in and no demonstrable benefit for women under age 50 was found, some of the same physicians who had been saying the research was crucial now began saying the research was flawed and its results suspect (for a recent up-date on the results of the study and the controversy surrounding it; see Miller et al. 2002; Goodman 2002; Sox 2002). A province-wide mammography screening program was instituted in British Columbia for women aged 40 and over, despite the NBSS's failure to show a benefit for women between 40 and 49 and despite the study's suggestion that screening in that age group might even be harmful. This seemed to be a clear example of the legitimacy of the science being questioned (even by those who were directly involved in its implementation) because it contradicted strong beliefs about the value of mammography and threatened the interests of particular groups (e.g., radiologists). These experiences in the world of biomedical research made me both appreciative and sceptical of conventional medicine. Since the 1970s I have continued to practice what many would call complementary and alternative medicine. I meditate and do Tai Chi regularly, eat a vegetarian, mainly organic diet, and have,used acupuncture and various forms of bodywork as healing and health promotion strategies. In the late 1980s I co-owned and managed a "holistic health centre" that offered a variety of services, including "floating" (time spent in sensory deprivation tanks), different forms of bodywork, Tai Chi classes, rebirthing, and "New Age" workshops. During the two years I spent in this environment 52 and another year spent as a Tai Chi teacher, I personally experienced the therapeutic power of some alternative healing approaches and met other people who were helped by such approaches. I also saw practitioners setting up shop with little education or training and little apparent expertise. Some seemed motivated by a desire to capture their share, of a growing market rather than any "call" to be a healing professional. I developed the same kind of ambivalence about "CAM" that I had about biomedicine. After my stint as a "New Age businessperson" I returned to my career as a researcher. Over the next ten years I engaged in a variety of research and evaluation projects and became increasingly convinced of the value of participatory, constructivist, and qualitative approaches to issues related to health policy and practice. Thus, at the time I began my PhD program, I described myself as a "Taoist/Buddhist Critical Feminist Constructivist who is a recovering Positivist." I saw myself as ideally situated to investigate the interface between conventional medicine and complementary and alternative medicine because of my insider's knowledge of different epistemologies and healing systems and my having learned to live with a multiplicity of sometimes conflicting voices. I was especially motivated to examine the issues related to the legitimation of CAM after watching some close friends struggle to combine CAM with conventional medicine when their young daughter was diagnosed with leukemia. 2 To clarify briefly, I am not a "strong" constructivist, i.e., I do not believe that reality is completely socially constructed or that everything is text. I believe that there is a "real" world "out there" but that much of my perception of and relationship to the real world is a function of social/cultural-constructions. 53 Objectives of the Research The specific objectives of the research were: to describe how cancer patients and health care practitioners come to see different approaches to healing as legitimate; to analyze people's experiences and perspectives in relation to cultural factors; to situate the personal and the cultural in the broader, social context; and to discuss the implications of the dissertation results for health care practice, policy, and research. The Fieldwork Setting The Vancouver region is a large, urban area with a diverse and multi-cultural population. The area is home to a large, tertiary conventional cancer clinic as well as a myriad of CAM practitioners and services. Conventional cancer treatment tends to be centralized at the British Columbia Cancer Agency (BCCA), although some cancer patients never become BCCA patients; This largely government-funded, provincial body oversees a range of treatment and research services, including four regional cancer care centres, links with nineteen chemotherapy clinics across the province, a Cancer Research Centre which will soon be expanding into a new $95 million facility, and screening programs for cervical cancer and breast cancer. Patient care services include some modalities that are considered complementary, including therapeutic touch, relaxation therapy, support groups, and art and music therapy. The annual budget for the fiscal year ending in March 2001 was $223 million (; accessed July 2002). There are several non-profit organizations in Vancouver that specialize in providing CAM services to cancer patients. The Centre for Integrated Healing is the first and only "integrated complementary cancer care centre" in Canada. It opened in 1999. It is staffed by conventionally trained physicians and a variety of CAM practitioners: a TCM practitioner, a homeopath, a naturopath, a body worker, massage therapist, nutritionist, and yoga teacher. It provides alternative treatments such as the MRV vaccine, 714X, and Essiac as well as counseling patients with respect to diet, exercise, and other lifestyle factors. The physicians' salaries are funded through a special arrangement with the provincial Medical Services Plan. The centre also receives funding from private donations and fees for service.3 ' The Tzu Chi Institute was a non-profit organization that was operating during the time I conducted my fieldwork. The Tzu Chi Institute opened in 1998 in the midst of a great deal of fanfare. It was founded by a Buddhist charitable organization to conduct research into the safety and efficacy of CAM. The Tzu Chi Institute also attempted to develop a model for the provision of integrated care that drew on the best of both CAM and biomedical worlds. About 30% of the patients who received care at the Institute were cancer patients. The Institute offered group programs such as mind-body programs as well as individual consultations and care provided by an inter-discipliriary team consisting of conventionally-trained physicians and CAM practitioners such as a chiropractor, TCM practitioner, massage therapist, and nutritionist. Initially, core funding from the Tzu Chi Foundation was supplemented by funding from the provincial health ministry and a number of mainstream health care organizations, including the B.C. Cancer Agency, Vancouver Hospital (where the Institute was housed), and the local Health Board. In the spring of 2002, government cut-backs resulted in the complete withdrawal of provincial funding. Infrastructure support from conventional medical 3 For more information, refer to 55 partners ceased at the same time, although research funding tied to specific ongoing studies was maintained. By the spring of 2003, it was clear that the Institute would not be able to secure sufficient funding from private donors to continue operating, so the Institute closed in March 2003.4 Hope House is a non-profit organization of professionals and cancer survivors that focuses on providing social support and counseling for cancer patients and their families. It is careful to maintain its financial independence from mainstream institutions and is supported through private donations and voluntary effort.5 The Callanish Society is another non-profit organization that provides support to cancer patients and their loved ones. Callanish offers week-long residential retreats for cancer survivors six times a year. It began offering retreats in 1995. Callanish recently began offering similar retreats for health care professionals. The organization also sponsors social events and regular opportunities for retreat participants to come together for ongoing support.6 In addition to these non-profit organizations, there is a multitude of individual practitioners in the Vancouver area who provide CAM treatments. Some of these (e.g., naturopaths, chiropractors, massage therapists, and TCM practitioners) are linked to institutionalized professional colleges. Others would be considered part of the "folk" arena, i.e., healing specialists who are not members of government-sanctioned professions. As noted in chapter 1, there are more users of CAM in the West than in other parts of Canada. As evidence of the popularity of CAM therapies in Vancouver, medical students at the University of British Columbia have formed the "Alternative and 4 For more information, refer to 5 For more information, refer to • 56 Integrative Medicine Society" which produces an annual directory of CAM services, training institutions, and products (; accessed May 2003). Thirty thousand copies ofthe first edition of this directory were printed in 2000-2001. Twice as many copies of the next year's 80 page directory were printed and distributed. This directory lists the full gamut of professional and folk CAM practices and services, including Therapeutic Touch, Reiki, Rolfing, aromatherapy, Pilates, yoga, meditation, Qi Gong, Tai Chi, iridology and shamanism. The "popular sector" of the health care system in the Vancouver area also demonstrates the prevalence of CAM practices and beliefs. In some quarters, Vancouver is known as the California of Canada: it is seen as providing fertile ground for various subcultures such as environmentalism, holistic health and the "New Age." This setting provides numerous examples of the kinds of activity that are associated with CAM. For thirty years, Banyen Books has been a mainstay of the alternative scene in Vancouver. This bookstore has a stock of 26,000 books, CDs, tapes, and videos related to topics such as transpersonal psychology, Eastern spirituality, ecology and community, metaphysics and philosophy as well as a variety of paraphernalia related to "New Age" and spiritual practices such as yoga and meditation. Banyen also holds regular workshops and lectures (; accessed May 2003). Two major alternative magazines are based in Vancouver: Common Ground and Shared Vision. Both these free monthly magazines contain directories of CAM practitioners and services. Common Ground claims that each issue reaches 250,000 readers (; accessed May 2003), while Shared Vision reaches 175,000 (; accessed May 2003). The Vancouver area also comprises a variety of CAM-related associations 6 For more information, refer to 57 such as the Alternative Health Network, an advocacy organization, as well as educational institutions that train practitioners, including several private colleges that teach TCM and a training program in Holistic Heath Studies at a local public community college. F i e l d w o r k M e t h o d s In doing the fieldwork, I relied primarily on three methods of data collection: individual interviews with cancer patients and with conventional and CAM practitioners, participant-observation in relevant settings, and review of textual material. I began doing interviews in the fall of 1999 and did my last one in the spring of 2003. In total, 45 individual interviews were done. The perspectives of a total of 24 cancer patients were included in the research (17 patients were interviewed individually and seven took part in a group interview). The research incorporates the perspectives of nine conventional. health care practitioners and eleven people involved in CAM: ten practitioners and one administrator. Eight people participated in more than one interview. I began the fieldwork by focusing on the experiences of patients, since I wanted my interviews with practitioners to be informed by an understanding of patients' perspectives. Interviews with Cancer Patients I did individual interviews with 17 cancer patients, all of whom had used some kind of complementary/alternative approach as part of their cancer treatment regime. Ten of these patients were interviewed once; seven were interviewed twice. A total of 24 personal interviews with individual cancer patients were conducted. Ten of the patients were women; seven were men. The age range of the women was from 34 to 69, with a 58 mean age of 52. The age range of the men was from 48 to 69, with a mean of 58. Two of the participants were Chinese; one was Indo-Canadian; the rest were white. All of the participants had completed high school, with four having some post-secondary education, six having undergraduate degrees, and three having graduate degrees. Eight of the participants were married, and nine were single, divorced, or separated. The patients had been diagnosed with a variety of cancers and were at various stages ofthe cancer trajectory, from a few months to more than twenty years post-diagnosis. When interviewed, nine participants believed they were in remission, six were in active treatment, and two were receiving palliative care. As of this writing, six of the patients I interviewed have died. Participants had been diagnosed with the following types of cancer: breast (6); prostate (4); gynecological (2); melanoma (1 male and 1 female); lymphoma (1 female); esophageal/stomach (1 male); and colon (1 male). Four of the patients refused conventional treatment beyond that required to confirm the diagnosis. Thus, this group has a higher proportion of people (24%) who have refused conventional treatment than is typically found in survey samples of cancer patients (usually less than 10%). Most patients used several CAM treatments, typically combining activities such as participation in a support group and meditation with the ingestion of substances such as high-dose supplements, herbal remedies such as Essiac, and/or other treatments such as Iscadore or shark cartilage. Table 2 presents a summary of each patient's situation. For further information, see chapter 4, where the stories and perspectives of six patients are profiled in detail and Appendix A, where brief profiles of each patient are provided. 59 Table 2 : Characteristics of Cancer Patients Interviewed Individually II) Demographics Diagnosis Recruited Conventional CAM Treatments Status at No. Date and: Type of Cancer Through Treatments Used \ Used Interview 1 • Male, white, 55. Stomach- Family • Surgery • Anti-cancer Assumes • Married with • esophageal physician • Chemo vaccine remission children cancer, • Essiac • Retired teacher & Oct '97 • Supplements social activist. • Exercise • BA and teacher's degree. 2 • Female, Chinese, Breast, '85; Counsellor • Surgery • TCM: herbs Palliative at 50. recurrence (friend of • Radiation • Diet change time of • Single in bone '93 author) • Chemo • Exercise interview. • Medical social • Naturopathy (Died Fall worker • Support group '00) • University degree 3 • Male, white, 48 Prostate, Family • Hormonal • Meditation Active • Married with Oct'99 physician therapy • Visualization treatment; children • Surgery • Yoga considering • Manager. • MSW. • Diet change • Naturopathy: herbal remedies • Acupuncture radiation 4 • Female, white, 69 Breast, Hope • Surgery • MRV vaccine Assumes • Writer Jan '99 House (biopsy only) • Essiac remission • Divorced, grown children. • Vitamins, herbs, and other • Some university, no degree. supplements • Visualization, affirmations • Meditation • Support • Yoga • Diet 5 • Female, white, 54 Breast, '92; Hope • Surgery . TCM: herbs, Assumed • Separated with recurrence House • Chemo acupuncture remission at grown children in ovary & • Hormones • Diet time of • Retired teacher intestine, • Meditation interviews. • University degree '98; new breast primary, summer '00 • Support group • Various Mind-body (Died July '02) 6 • Female, white, 50 Melanoma, Hope • Surgery • Iscadore Long-term • Single stage IV House • Chemo • Diet change remission • Counselor • Grade 12: '77; Recurrence '80; second recurrence few months later • Meditation • Psycho-therapy • Yoga • Vitamins • Homeopathy 60 rID Demographics Date and Recruited Conventional': C A M Treatments Statustat No. Type of:, Diagnosis Through Treatments • Used '.Used/,.;- , ... Interview " » 7 • Male, 66, white Melanoma, Family • Surgery • diet change Actively • Divorced, grown children, diagnosed Feb '99; physician • Healing touch • Meditation pursuing CAM • Retired teacher recurrence . Tai Chi, Qi Gong treatment and administrator Oct '99 (Died Aug • M.A. '00) 8 • Female, white, 62 Breast, '97 Family • Chemo • Mind-body Assumed - • Divorced, grown physician • Radiation • Visualization remission at children • Surgery • Music time of • School • Relaxation group interviews. administrator (Recurrence . M.Ed. Spring '02) 9 • Female, white, 50 Breast, Hope • Surgery • Vitamins: high Active CAM • Single diagnosed House • Refused dose treatment at • Self-employed. '99; chemo & • Supplements interview. • 3 years univ., technical courses Recurrence-several months radiation • Massage • enzymes (Died '02) later 10 • Male, white, 61 Prostate; C1H • Refused . TCM: Herbs, Active CAM • Married Jan '98 hormonal acupuncture treatment • Businessman treatment and . PCSPES . BSc. radiation • Group support • Meditation 11 • Female, white, 55 • Married Cervical, diagnosed Hope House . • Surgery • Naturopathy • IV vitamin C Refused radiation and • Activist '98; • acupuncture further (volunteer) vaginal, • MRV vaccine surgery; • BA, some grad diagnosed • Essiac active CAM school '99 • Vit A, other supplements • Group Support treatment 12 • Female, white, 34 Lymphoma Counselor • Surgical • Naturopathy Just finished • Married, young Diagnosed (friend of biopsy • Essiac active child, '97 author) • Chemo • Vitamins treatment at • Secretary. • Grade 12 • Group support interview. (Later recurrence) 13 • Male, white, 64 Colon with CIH • Surgery • Shark cartilage Active CAM • married, grown metastasis • MGN3 (immune treatment. children, • Retired builder. to liver '99 enhancer) • Vitamins (Died Sept '00) • High school • Visualization • Group Support 14 • Female, Chinese, Breast, Heard • Surgery • Acupuncture, Assumed 40 Jan '99 about • Chemo herbs remission • Single, . Office research through • Radiation • Group support • Reflexology administrator. friend • Yoga * • Grade 12 and • Diet change some college • Art therapy 61 •ID No. ' Demographics Date and; Type of Diagnosis /Recruited;"; Through Conventional1 _ Treatments Used •:CAM Treatments^  > Used • :''* -Status at : t Interview 15 • Male, white, 68 • Widowed • Retired manager • Grade 12 Prostate, fall '99 BCCA • Refused conventional treatment • Saw palmetto . PCSPES • Chinese herbs • Diet changes Assumes remission 16 • Male, white, 48 • • Single • Fire fighter • Some university Prostate, diagnosed '98 BCCA • Hormone treatment * Radiation • Unconventional radiotherapy in U.S. • Cesium chloride Assumes remission 17 • Female, Indo-Canadian, 60 • Married, grown children • Retired teacher • University degree Ovarian, stage III diagnosed '97 BCCA • Surgery ' • Chemo • Hydrazine sulfate • Thymus extract • Supplements . MGN3 • Support group, relaxation group • Meditation Palliative at time of interview 62 The patients were recruited for the research through a variety of means. Five were interviewed after they contacted me after seeing a poster about my research (see Appendix. B) at Hope House, a non-profit organization that offers counseling and support to cancer patients and their loved ones. Four contacted me after hearing about my research through their family physician (three physicians who are part of my personal network referred patients to me). Three patients were referred to me by their oncologist at the B . C . Cancer Agency after I asked some of the oncologists I had interviewed to help me recruit participants. Three others contacted me after hearing about my research through mutual friends or acquaintances. Two patients volunteered to be interviewed after hearing about my research when I participated in a patient support group at the Centre for Integrated Healing (CIH), a facility staffed by conventionally trained physicians and alternative practitioners such as naturopaths, and T C M practitioners. Most interviews were 1.5 hours long. Interviews were tape-recorded and most were subsequently transcribed verbatim. A small number of interviews conducted in the later stages of the fieldwork were not transcribed in their entirety. Most interviews were conducted in the participant's home. Three participants were interviewed in a private room at their place of work. Interviews were relatively unstructured, the objective being to let the participant's concerns and perspectives contribute to the shaping of the conversation. Generally, I , began the first interview by asking participants to tell me the story of their diagnosis and treatment. I asked them to talk especially about how they made decisions about what 7 At the beginning of my fieldwork, I intended to post a notice at the BCCA's Vancouver centre inviting patients to participate in the study but later decided not to do this. By the time I received approval from BCCA to post a notice, I was aware of how much patients wanted to talk about the research issues and was 63 treatments to'undergo. Using the information provided in the person's narrative as the starting point, we then explored the ways he or she thought through the decisions to be made, e.g., what sources of information were considered credible, what factors were taken into consideration and why, how trade-offs were made, what role other people played in their decision making, how beliefs about health and illness influenced the decisions, and how the assessment of a treatment's value changed as a result of experience with the treatment or the practitioner. Depending on the time it took to cover this territory, I either asked for the person's perspective on some of the health policy issues in the closing stages of the interview or, if it seemed that there was still more ground to cover, or if I needed time to reflect on what had been said, I requested a second, follow-up interview. Prior to the follow-up interviews with the seven people I interviewed twice, I reviewed the tape or the transcript of the first interview and made notes of specific issues I wanted to explore in more depth or points I wanted to clarify. Generally, after pursuing these topics in the second interview, I asked for the participant's perspective on the policy issues to close the interview. I also facilitated a group interview at Hope House in March 2000 with seven cancer patients and the spouse of one patient. When I initially solicited research participants at Hope House, the response was so enthusiastic that I decided to do the group interview in.order to hear the perspectives of the people who wanted to provide input to the study without weighting the sample (i.e., the group of people who volunteered to take part in the study) too heavily with patients recruited from a single source. The group interview participants were Hope House members who had concerned that I would be inundated with potential participants when I only needed a small number of patients to complete my sample. 64 volunteered to be interviewed in response to my original poster or who responded to a subsequent poster inviting participation in the group. In addition to briefly telling their own stories of diagnosis and treatment, the participants in this group talked about how they defined complementary and alternative medicine, what sources of information about treatment options they considered trustworthy and why, and what role their own personal experience played in their thinking about the value of different treatments and what importance they gave to scientific evidence. This group interview was tape-recorded and transcribed verbatim in its entirety. Interviews with Conventional Practitioners I interviewed six oncologists who work at the Vancouver centre of the British Columbia Cancer Agency (BCCA). Three of these are radiation oncologists; three are medical oncologists. Four are male; two are female. Most had more than ten years experience in oncology. I also interviewed three B C C A nurses, two of whom work at the Vancouver centre, one of whom works at the Fraser Valley centre. AH the nurses are female. One is a nurse engaged directly in patient care; two act as consulting specialists to other nurses. Two interviews were conducted by telephone because this was the most convenient arrangement for the participant, given the constraints on his or her time. The remaining seven interviews were conducted in person at the Vancouver Cancer Centre. The interviews lasted about an hour. A l l interviews'were tape-recorded and most were transcribed verbatim in their entirety. The recording quality of two interviews was so poor that they were not transcribed. 65 The conventional practitioners were recruited for the study by means of an e-mail invitation that was sent in June 2001 to all BCCA oncologists and nurses through the office of the secretary of the CEO of the BCCA. I interviewed all those who responded to this invitation during the summer of 2001. In general, I began my interviews with conventional practitioners by asking them to talk about the issues they are facing related to the use of CAM by cancer patients. Depending on their responses, the interviews continued with considerations of questions such as the following: How have your experiences influenced your thinking about why patients use CAM? How does CAM use affect relationships between conventional practitioners and patients? What are the fundamental differences between conventional medicine and CAM? What sources of information about the safety and efficacy of different treatments should practitioners and patients use in making decisions about treatments? What ethical issues does CAM use raise for you? And what are your views on the concept of integrative medicine? Interviews with Complementary and Alternative Practitioners I interviewed one administrator of a CAM treatment centre and ten CAM practitioners who practice a variety of healing approaches, including healing touch, traditional Chinese medicine (TCM), naturopathy, chiropractic, massage, and counseling that encompasses . spiritual as well as psychological concerns. Two of the practitioners are conventionally trained physicians who now rely on techniques that fall into the category of CAM (e.g., the use of unconventional substances such as anti-cancer vaccines, herbal remedies, Or dietary regimes, and meditation). Four of this group of informants was affiliated with the 66 Tzu Chi Institute, a facility whose objectives were to offer integrated biomedical and CAM treatments and to conduct research regarding these treatments. One practitioner was affiliated with the Centre for Integrated Healing. One was affiliated with Hope . House. Six of these CAM practitioners specialize in cancer care. Two are themselves former cancer patients. Most would be considered members of the professional health care sector, rather than the folk sector. The exceptions might be the healing touch practitioner and the counselors, although these practitioners had undergone specialized training and received remuneration for their work. The CAM practitioners were recruited for the study through a variety Of means. In some cases I requested an interview after meeting the individual through my fieldwork and learning that the individual or the organization with which he or she was affiliated played a key role in CAM cancer care in Vancouver. In some cases I had not met the individual but requested an interview after hearing about the practitioner from patients or other practitioners. In the case of the Tzu Chi practitioners, I attempted to organize a group interview with the Institute's practitioners, but scheduling difficulties made this impossible. Instead, I interviewed the three practitioners who were most interested in participating in the study individually, by telephone. The other seven interviews were conducted in person in the participant's home or place of work. One individual was interviewed twice, the rest were interviewed once. There was only one CAM practitioner that I approached who did not take part in the study. This naturopath initially agreed to be interviewed but repeated attempts to arrange an interview were unsuccessful. Generally, the interviews lasted 1.5 hours. All-interviews were tape-recorded. Three interviews were transcribed verbatim in their entirety. In the case of the other 6 7 interviews, notes on the interviews were done while listening to the tapes. Only selected passages were transcribed, primarily those destined for inclusion in the dissertation. The interviews with CAM practitioners generally began with them providing a brief explanation of their approach to healing, if I was not already aware of their work. I then covered the same issues covered in my interviews with conventional practitioners: What issues are you facing as complementary and alternative medicine and conventional medicine converge? Why are patients using CAM? What are the fundamental differences between conventional medicine and CAM? What sources of information about safety and efficacy do you consider credible and trustworthy? What are your views on integrative medicine? Participant-Observation I did participant-observation in several settings. From December 1999 to October 2000,1 was a member of a committee consisting of representatives from the BCCA and the Centre for Integrated Healing (CIH) that was created to consider whether and how to achieve the integration of conventional and CAM facilities and practitioners. After several meetings, this committee evolved into a larger committee (two patients and another researcher joined the committee) with a specific mandate: to develop recommendations regarding the integration of conventional and complementary/alternative health care as part of a national effort to form a comprehensive strategy for cancer prevention, screening, diagnosis, and treatment. This committee met every two weeks while it was discussing these issues and formulating its recommendations (which were submitted in June 2000). The other committee members 6 8 gave informed consent to allow me to include my experiences in the committee in my research. In the early stages of my involvement with this committee, my role was predominantly that of observer. Since I was taking notes anyway, I became the group recorder. Once the committee took on the responsibility to develop a set of policy recommendations and the group expanded, I became a more active participant, offering my perspective on the issues when I thought this would help the committee achieve its objectives. Participating in this committee gave me a strong appreciation for the questions and concerns of people on both ends of the biomedical-CAM spectrum as well as giving me a direct experience of struggling with the thorny policy and practice issues presented by the convergence of CAM and conventional medicine. I also participated in a group for cancer patients at the CIH. This group met weekly for five weeks with the goal of teaching patients about various mind-body approaches to healing (e.g., meditation and visualization). The group members gave their consent for me to participate in the group; they were eager to contribute to the study because of their perception that the topic was important. I attended all but one of the group sessions and participated in all of the group activities, including the occasional sharing of personal stories and experiences. It is important to note this group did not reach the level of intimacy that patient groups sometimes do, since the emphasis in this particular group was more on providing instruction in mind-body techniques than on providing emotional support. I attended a number of conferences relevant to the research issues: a conference on CAM for physicians sponsored by the Tzu Chi Institute and the B.C. Medical Association in September 1998; a conference for practitioners and patients called "Living 69 Well with Cancer" spearheaded by the BCCA in March 2000; and the annual "Comprehensive Cancer Care" conference in Washington D.C. sponsored by the Center for Mind-Body Medicine, the National Cancer Institute, and the National Institutes of Health (I attended in June 2000). In addition, I attended an August 2000 public consultation on the regulation of natural health products organized by Health Canada, a symposium on Aboriginal healing approaches used in several countries held at the University of British Columbia, a First Nations medicine wheel ceremony, and a variety of public lectures and presentations by well-known CAM proponents (e.g., Carl Simonton, Deepak Chopra, and Marion Woodman) and local experts on the issues (e.g., Steven Aung and Allan Best). Attending these public events gave me a feel for the social context surrounding the research issues and gave me first-hand exposure to the perspectives of some of the major players in the debate about the legitimacy of CAM. Collection and Review of Texts and Discourses In September 1999 I began collecting relevant stories from the local print media and from . national publications such as Saturday Night and the National Post. These stories included items about new cancer treatment approaches, both conventional and complementary or alternative, human interest stories about individual patients, debates about the legitimacy of CAM, articles about the role of science in society, and articles about health policy and CAM. I also reviewed transcripts from a series of programs aired on CBC Radio's Ideas program in the spring of 2000. This series, entitled "Rethinking Medicine," dealt directly with many of the issues that are central to the dissertation. 70 Relevant passages from these texts were highlighted and observations about public discourses were included in the analytic memos I wrote as the fieldwork progressed. After interviewing patients and realizing the important role the Internet plays in patients' decision making, I "surfed" the Internet to find out what kinds of information patients are encountering. At first, I approached the Internet as if I were a cancer patient looking for information about CAM treatments. 1 quickly became aware of the profusion of information and perspectives relevant to the dissertation issues that can be found on the Internet and so continued exploring, looking for examples that would illustrate some of the key features of the public discourse surrounding the legitimacy of CAM. Some relevant examples from these discourses are presented in chapter 7. Ethica l Considerations The plans for the research were evaluated and approved by the ethics committees of the University of British Columbia and the British Columbia Cancer Agency before any data collection was undertaken. Other settings where fieldwork was undertaken (e.g., complementary and alternative facilities) did not require separate ethical approvals. The research complied with the guidelines for privacy, confidentiality, inclusion, informed consent, and other ethical concerns presented in the Tri-Council Policy Statement regarding Ethical Conduct for Research Involving Humans (Social Science and Humanities Research Council 1999). (For copies of the consent forms, see Appendix C.) There were no unusually difficult ethical dilemmas that needed to be resolved in the course of the fieldwork. I had no difficulty "entering the field" and was warmly welcomed in all the settings in which I collected data. I had no difficulty recruiting 71 people to take part in interviews or obtaining informed consent. I had to be careful about confidentiality, given the relatively small world of CAM cancer care in Vancouver.' I had to be sensitive to the hopes and fears of those whom I interviewed. I had to be mindful of the danger of leading respondents in particular directions given the unstructured nature of the interviews. But, given people's eagerness to talk about the issues and my lack of formal affiliation with any organization or healing approach, I did not feel that coercion was a significant danger. While there were a few occasions when patients became angry or upset about their situation during an interview, they recovered their composure as they continued telling their stories and I sensed no risk of lasting harm. On only one occasion did a patient ask me directly for information about alternative treatments she might use and, since I knew nothing about specific treatments for the kind of cancer she was inquiring about, I simply said that. Other than this one occasion, patients seemed to understand clearly that my role was not to provide information or advice about different cancer treatments. Since the dissertation presents detailed descriptions of individuals' situations and perspectives, there is some risk that research participants could be identified thus nullifying the assurance of anonymity they were given. Where there was significant risk that a description or quote might enable others to identify a participant, I gave the relevant sections to the participant before finalizing the dissertation (e.g., the patients profiled in chapter 4 reviewed their profiles). I asked the participant specifically to consider whether their anonymity was at risk. None of these participants expressed concern about the material in the dissertation. Some said that they might be identifiable but that this was acceptable to them since there was nothing reported in the dissertation 72 that they had not either already said in public or would be willing to say in public. In addition, the question of whether to identify the B.C. Cancer Agency as the site of my interviews with conventional practitioners was discussed by my supervisory committee, which included the CEO of the BCCA. Given the likelihood that readers would easily identify the agency because of the central role it plays in cancer care in Vancouver, it was decided that it was acceptable to name the setting where these interviews took place. Analysis and Interpretation of Data The tapes of almost all of the interviews were transcribed verbatim into Word files. The tapes and transcripts were reviewed many times during the course of the fieldwork. Particularly cogent, insightful, eloquent, or relevant passages were highlighted as potential quotes for inclusion in the dissertation. In the case of a small number of interviews done later in the fieldwork, summary notes were word processed while listening to the tapes and then verbatim transcripts of selected passages to be used in the dissertation were done. In the early stages of the fieldwork, the transcripts were analyzed according to the constant comparative method described by Emerson et al. (1995). This method involves iterative rounds of coding, starting with "open codes" based on the ideas, themes, and issues expressed by research participants, and progressing to more abstract "focused codes" and categories of codes. Analytic and reflective memos were written in conjunction with the coding process as a way of extending the process of inquiry by making connections between categories of codes. For example, one category of focused codes or primary themes was "medical systems." This category included open codes such 73 as "CAM outcomes," "limits to conventional medicine," and "patient-doctor communication." Another category was "social-cultural context." This category included the following open codes: "cancer culture," "vested interests," and "forces behind CAM use." A third category, "Epistemology" included codes such as "knowing through the body," "mind-body link," and "trial and error." In the later stages of the fieldwork, when the predominant themes and categories of themes were clear, the coding process focused on identifying interview passages that confirmed or added new dimensions to those primary themes. Passages from different interviews were cut and pasted and compiled according to theme. Since participants rarely spoke about legitimacy per se, I also reviewed the interviews and asked the question, "How is this person determining the legitimacy of the different approaches to healing that we talked about?" The analytic memos that resulted , from this review of the tapes and transcripts also made comparisons between participants, including comparisons between the legitimation strategies of patients vs. those of biomedical or CAM practitioners. The field notes describing participant-observation sessions were not analyzed in as standardized or systematic a way as the interview data, since the settings were very different and the degree of my engagement as a participant varied. My reflections on what I experienced in the settings where I did participant observation were incorporated in the various analytic memos I wrote. Thus, the data from my participant-observation sessions provided contextual information that helped move the inquiry and the analysis forward. Excerpts from the notes from some of these sessions are included in the description of CAM settings in chapter 6. 74 In order to integrate the preliminary analyses I had done and create a conceptual synthesis ofthe fieldwork data (i.e., the interview data, the lessons from my participant observation, and the textual material I had collected), I relied on a framework for discourse analysis described by Gee (2000). This analytical framework is congruent with the interdisciplinary and critical-interpretive, constructivist approach I have taken in the research. The framework encourages critical inquiry-into exactly the kinds of sociocultural legitimation processes that are the focus of the dissertation. Gee's framework uses a number of analytic tools or thinking devices. Two of those conceptual analytic tools were particularly relevant to my dissertation: situated meanings and cultural models. Gee defines situated meanings as mid-level patterns or generalizations that are not too specific, but neither are they too general. They are flexible, transformable patterns that come out of experience and in turn, construct experience as meaningful in certain ways and not others; Situated meanings are a product of the bottom-up action and reflection with which one engages the world and the top-down guidance of cultural models (Gee 2000). Cultural models mediate between the micro level of social interactions and the • macro level of social institutions. They serve to establish what counts as a central, typical case and what counts as marginal or non-typical. Cultural models are images or storylines or descriptions of simplified worlds in which prototypical events unfold. Cultural models can coalesce into "master models" that incorporate more discrete models and provide generalized, encompassing perspectives. For example; the master model around cancer being a "dread disease" (Patterson 1987) includes other cultural models such as "cancer should not be talked about openly" or "donating money to research will 75 bring about the cure." Cultural models are rooted in the practices of socioculturally defined groups of people. More will be said about this connection between cultural models and social practices later in the dissertation. Gee's conception of cultural models is congruent with the way this concept is used by other authors (Gee 2000).8 Gee (2000) describes "little d" discourses—the way language is used—as being melded with non-language "stuff such as clothes, gestures, symbols, tools, values, attitudes and beliefs to create "big D" Discourses that enact specific identities and activities. For example, using the language of Gee's framework, there is a Discourse of biomedicine that includes discourses about the legitimacy of different approaches to healing. In the ensuing discussion of my fieldwork, when I want to invoke this larger conception of Discourse—as a force that both carries and bestows social and cultural power—I will capitalize Biomedicine or CAM or the word Discourse., Gee's (2000) analytic framework allowed me to use the concepts of situated meanings, cultural models, and Discourses to examine the fieldwork data in light of several questions that Gee identifies as crucial to applied discourse analysis (i.e., discourse analysis that is intended to further the understanding of important issues and serve as the basis for effective action). These questions include: What cultural models seem to be at play in connecting situated meanings to each other? What Discourses and/or institutions are being (re)produced in this situation and how are they being stabilized or transformed? What relationships and identities with their concomitant personal, social, and cultural knowledge, beliefs, values, and feelings seem to be relevant to the situation? What social goods (e.g., status, power, legitimacy) are relevant (and 8 See the concluding section of chapter 2 for a discussion of the relevance of cultural models to the dissertation. 76 irrelevant) and how are these social goods connected to cultural models and Discourses? How do situated meanings, cultural models, and Discourses interact to create coherence for the actors in the situation? (Gee 2000) Using Gee's (2000) framework as a guide, I reviewed the tapes and transcripts of the interviews with patients again, asking the above questions. On the basis of the resulting analytic memos, I prepared the patient profiles presented in chapter 4.1 then reviewed the tapes and transcripts of the practitioner interviews asking the same questions, wrote analytic memos, and selected passages that illustrated relevant perspectives or dynamics. The results of these analytic processes are presented in chapters 5 and 6. The results of this discourse analysis dovetailed with the results ofthe earlier coding and categorizing of the interview data, i.e., the three key areas that are being unsettled and contested in the debate about CAM's legitimacy are: the relationship between patients and practitioners, the nature of the links between the mind and the body and the nature of health and healing, and the value of different ways of knowing. The chapters that describe the perspectives of those within the Discourse of Biomedicine and the Discourse of CAM and the chapter that presents relevant examples from public discourses focus on these key issues. After writing the patient profiles presented in the next chapter, I also drew schematics that attempted to portray the dynamic processes whereby patients use cultural models and discourses as a basis for making treatment decisions (see Appendix D). The process of drawing these schematics contributed to the "ripening" of the theoretical 77 analysis of the data from patients and laid the foundation for the discussion of legitimation processes contained in chapter 8. This description of the analysis of the fieldwork data has followed the academic convention of focusing on what is done with the data after they are collected. Without downplaying the role of these after-the-fact analytic processes, I want to mention the important role that doing the fieldwork played in the process of "analysis and interpretation." I had countless large and small "aha!" experiences during interviews and events where I was doing participant observation. The unstructured nature of the interviews allowed for a mutual exploration of the research issues, sometimes with the result that both the participant and I discovered new territory. For me, the experience of doing the interview, being with the participant and seeing his or her facial and bodily, expressions, hearing the story, and feeling the emotions, contributed useful insights and helped move the inquiry forward. It is also important to note that the analytic and interpretive process continued as the dissertation was being written. Trustworthiness of Analysis and Interpretation Constructivist social science research attempts to use new ways of establishing the validity or verisimilitude of social science research. Various alternatives to positivist conceptions of validity and reliability have been proposed, including constructivist criteria of trustworthiness (e.g., credibility and confirmability) and authenticity (e.g., fairness and capacity to enhance understanding) (Cuba and Lincoln 1994) and feminist notions of catalytic validity (the degree to which the research process provides an impetus for transformative action) (Lather 1991) and voluptuous validity (the degree to 78 which research includes and reflects women's experiences) (Lather 1993). As an ethnography, this dissertation is inherently interpretive. It cannot be judged against any objective standards of truth. Ultimately, its readers will be the arbiters of its trustworthiness, authenticity, and utility. I have endeavoured to provide a partial assessment of the trustworthiness of my representations of the fieldwork data by having people I interviewed review specific chapters of the dissertation. Four of the six patients whose stories and perspectives are described in chapter 4 have reviewed their own profiles. Unfortunately, two of the patients who are profiled passed away before the drafts were written. The four patients who reviewed their profiles all verified the validity and relevance of my description and interpretations. Virtually no changes to my drafts were requested. Two patients made a point of expressing their appreciation that I "got it." Similarly, I asked two of the six oncologists and one of the three nurses I interviewed to review the chapter that describes the perspectives of biomedical practitioners. In the case of this chapter as well, no substantive changes were seen as needed. The biomedical practitioners, too, perceived that I had accurately represented the situation as they saw it. For example, one said that things resonated with her and that her reaction to the chapter was, "Of course." The reactions of the conventional practitioners who reviewed this chapter also suggest the thesis may have catalytic validity. One oncologist thanked me for giving him the opportunity to read the chapter since it had prompted him to think differently about some of the issues. The chapter describing CAM was reviewed by four of the eleven CAM-associated people I interviewed. Their feedback was similar to the conventional practitioners: my description and analysis reflected the situation as they saw it. Thus, 79 these "member checks" by people from the various groups whose perspectives are presented in the thesis testify to the trustworthiness and relevance of my analysis and interpretation. The strength of my analysis is also affirmed by its internal consistency, i.e., the results derived through the constant comparative method converged with the later discourse analysis. In addition, the three key themes that emerged from the analysis of the data from patients are the same issues that two other authors have highlighted as central to the questions under investigation. I was unaware of these other statements of the key issues until after my analysis ;was complete, so my identification of these same issues arose independently. This congruence further reinforces the claim for the trustworthiness of my analysis. In discussing the changes that have been occurring in the social and cultural context surrounding medical care, Lupton (1994) points out that patients are demanding to be better informed, to be included in decision-making processes, to be treated as more than just physical "bodies" and to have their own knowledge about their health valued. The second author whose interpretations coincide with mine weaves the story of her own treatment for cancer into a social and cultural analysis of cancer, biomedicine, and CAM. She notes that, "The patterns of the conceptualization of illness, disease, the body, the doctor and the patient have become 'second nature' to our contemporary Western culture, and are integral to its fundamental discourses of rationality, objectivity, and positivism" (Stacey 1997:52). Stacey (1997) sees these assumptions being unsettled by discourses associated wkh the prevalence of CAM. 80 Strengths and Limitations of the Methods Despite the above assertions that the analyses and interpretations reported here are trustworthy, there is no question that what is written here is a construction that very much reflects who I am and what I believe. This is both a strength and a limitation. Given my knowledge of and experiences with both the worlds of biomedicine and of CAM, I had little difficulty gaining access to the settings and the people who were the subject of inquiry. As something of an insider to both worlds, I was able to understand the perspectives and speak the languages of most people I met during the fieldwork. This facility with the Discourses of both Biomedicine and CAM opened doors that might have been closed to other investigators. I often felt, during an interview, that the ease with which the participant and I found common ground contributed enormously to the depth and richness of the conversation. In this respect, my being an insider was a strength. On the other hand, my experiences with both biomedicine and CAM meant that I did not approach the research with what in the world of Zen practice is called "beginner's mind" (Suzuki 1973). I came to the fieldwork feeling more aligned with CAM than with biomedicine. This bias, no doubt, meant that I.did not pursue some questions with participants that I thought I already knew the answers to, or believed were not interesting. As a result of my experiences during the course of the fieldwork, my perspective changed. For example, I became more appreciative of conventional oncology practitioners because I got a glimpse of the courage it takes to continue practicing in the midst of the ambiguity, frustration, and suffering they encounter every day. I also became more sceptical about some aspects of complementary and alternative medicine as I 81 explored the role of cultural models in creating meaning and saw the influence of belief systems in my own thinking about health and illness. Each reader must make her or his own judgment about the dissertation's trustworthiness. As the writer, I make no claims to truth in the positivist sense. If the dissertation deepens understanding and clarifies the issues (which themselves concern the question of how legitimacy is determined), then I hope it will be considered as one example of the value of ethnographic approaches to complex issues. My representation of the perspectives of those I met during the fieldwork may be seen as problematic, given the current concern about representation in ethnography. The material from the interviews presented in chapters 4, 5, and 6 portrays only one side of the conversation. That is, the words of the participant are quoted, but my questions and comments are not. I have also selected some passages for inclusion and omitted others. These are both limitations imposed by space constraints. I chose not to use the dissertation as an opportunity to show how the conversations were co-created because I believed that while this is an important consideration, it is neither central to the dissertation's themes nor crucial to the kind of analysis that was performed. As the ' • analyst, I assumed the right and the responsibility to select what was important. This focus on selected parts ofthe participants' input, their extraction from the dialogical context, and the focus on the content rather than the form of our conversations seemed to me to be appropriate given the relatively broad scope of the dissertation and the need to limit its length. However, it is important to acknowledge that a different type and level of discourse analysis could have been undertaken and the issue of representation could have been engaged more explicitly. 8 2 Another aspect of representation that is important to consider relates to the size and composition of the groups of people who were interviewed. The strength of the patient sample is that those who volunteered to be interviewed were thoughtful, articulate people who believed in the importance of the research and who were able to directly address the research issues. However, this group is only a small portion of the number of people in the local region who have cancer and who are exploring a wide range of treatment options. In addition to this group being small, I think it may under-represent patients who have little allegiance to cultural models associated with CAM. Given the nature of the inquiry, I think this is not a major weakness, but it means that the reader should be careful about assuming anything about the predominance of different cultural models in the general population. The group of biomedical practitioners that took part in the research is also small and self-selected; Some of the practitioners had a strong interest in CAM and one or two may even consider themselves "hybrid" practitioners. None of the biomedical practitioners who volunteered to be interviewed were openly hostile to CAM, so that perspective is not seen in the interview data, although it is presented in the context of the discussion of public discourses in chapter 7. The inclusion of the anti-CAM side of the debate in that chapter and the high degree of consensus among the conventional practitioners I met regarding the issues reassures me that the dissertation manages to adequately consider the range of biomedical perspectives on the legitimacy of CAM. It is the sample of CAM practitioners that I believe is the weakest. The CAM practitioners I interviewed represent only a small minority of a large, heterogeneous population. CAM includes a wide variety of different practices, some of which are rooted 83 in different worldviews and paradigms. In addition, my understanding of the challenges faced by those who are attempting to integrate biomedicine and CAM is based on interviews with practitioners, not direct participation in settings that are striving to implement integrated health care models. While the fieldwork generated enough material to answer the research questions to some extent, I believe that additional exploration of the perspectives of CAM practitioners and focused participant-observation in integrated settings would elucidate the issues further. This ethnography aimed to follow the research problem to relevant sites of inquiry. While I did manage to engage with many of the key environments and players, I do not feel I reached the point of "saturation" that is often the goal of qualitative research. Because of the broad scope of the inquiry, I "left the field" feeling there were still people to meet, perspectives to learn more about, and relevant settings to observe. For example, to reinforce the point made in the preceding paragraph, I think it would have been fruitful to explore settings where integrated care was being attempted and to pursue some of the specific approaches to healing that are subsumed under the CAM label in more depth, especially those such as traditional Chinese Medicine whose systems include substantially different cultural models. However, I believe that.the dissertation has revealed new and useful insights and understandings that can and should be used as a foundation for the resolution of some of the contentiousness evident in the interface between conventional medicine and CAM. To close this section, I offer some brief reflections on the interdisciplinary nature of the inquiry since I believe this aspect of the dissertation is both a strength and a -limitation. The strength of the interdisciplinary approach to the research is that it has 84 required me to draw on relevant research and thought from the social sciences, medicine, and health policy. This has been essential to the attempt to look at the research issues from a comprehensive perspective that embraces all of the important aspects of the issues rather than isolating and focusing on only a small piece of the puzzle. I believe this has been the right approach to take given the limitations of previous research in this area, particularly medically-oriented research that is not informed by the critical perspectives offered by the social sciences. The issues cross disciplines, thus it makes sense for the research to cross disciplines as well. However, the interdisciplinary nature of the work has limitations. First, given that the research has been done by one person rather than a team of scholars each grounded in his or her own discipline, there is a risk that the research has not been sufficiently rooted in the depth of knowledge of any one particular discipline. Further, my being a traveler in several disciplines and a resident in none has meant that I have not been a member of a cohesive academic community and so have not had the benefit of frequent dialogue about the research among peers. Another aspect of this lack of connection to a particular academic community has been the somewhat idiosyncratic way in which I have woven together threads from different disciplines. This may mean that the readers of the dissertation will not share the same discursive space, either with me or with each other. Academic work is intended to be read and judged by a community of scholars, but the challenge of interdisciplinary work is that it does not necessarily have a logical home community to receive it. This dissertation, like most ethnographies, presents only a portion of what was learned through the research. Much of the work is subterranean, underpinning what is visible but not itself directly seen. In work done within a single 85 discipline, where much of the subterranean knowledge is shared, the writer can invoke that knowledge without having to explain it. In the case of interdisciplinary work, a shared knowledge base cannot be assumed. These factors have made the writing of the dissertation challenging. The other challenge related to my attempts to cross disciplinary boundaries has arisen from the strength of the intellectual socialization I received in my undergraduate and graduate training in.Psychology. Doing this research has made me acutely aware that scholars in different disciplines not only use different languages and different methodologies but their thinking processes are different. There have been countless times during the analysis and writing where I have had to re-orient my thinking away from the search for linear variables and relationships that can be controlled and towards the task of making sense of the maelstrom of life outside the laboratory. Even as I write this, the logical positivist in me is still looking for the answer that will bring closure to the research question. 86 Chapter Four Conversations with Patients Introduction This chapter presents the stories and thoughts of six people who have been treated for cancer and have used complementary and alternative approaches1, usually in combination with conventional treatments. These six patients were selected as exemplars because each person's situation portrays important aspects of patients' experiences at the interface between conventional medicine and CAM. In addition, considered together, the six cases encompass the range of situations and perspectives I encountered. The conversation extracts included in this chapter show how patients use cultural models and discourses to create meaning and coherence out of profound uncertainty. The names given are not the real names of the people interviewed. Some characteristics of each individual have been described: I have endeavoured to provide descriptions that embody each individual's language without revealing the person's identity. The verbatim quotes from the interview transcripts have been edited to some extent. For example, hesitations, pauses, and some sentences that represent false starts, ' The patients I interviewed usually did not speak of "Complementary and Alternative Medicine" as a singular entity, although they knew what was meant by this term. Patients generally spoke of particular CAM therapies, approaches or products rather than speaking of CAM as a whole. 87 have been deleted. Where sections of speech have been omitted in the'interests of brevity, ' I have inserted an ellipsis. The aim of the editing was to achieve coherence and cogency while preserving the content and flavour of each speaker's contribution to our conversation. The conversations described in this chapter clearly reveal the predicament that cancer patients face. There is a plethora of information available about cancer and its treatment and much of it is contradictory. Unfortunately, conventional medicine can provide few guarantees. As one participant in the group interview I conducted said, "I don't think it's being disloyal in choosing to try an alternative treatment. We're just trying to save our lives. If the conventional treatments were working, we wouldn't even be having this discussion." T h e conversation with Joel: "If it's not going to harm me, I might as well try it." Joel is a 55 year old retired teacher and social activist. He volunteered to be interviewed after hearing about my research from his family physician. I interviewed him twice in his home: a large old house, located in a neighbourhood of similar houses, most of which have been subdivided to accommodate a mix of students and middle class families. Joel is married with adolescent daughters. He has a wiry build, and longish hair. His short beard, like his hair, is salt and pepper gray. The interviews took place in a small den, which had floor to ceiling bookcases filled to overflowing with books, magazines, and stacks of paper. Several oil paintings filled up any otherwise empty wall space. Small . oriental rugs dotted the wood floor. The house felt like a house that is used for living, not for show. 88 Joel was treated for stomach and esophageal cancer two years before our interviews. He had surgery and chemotherapy soon after his diagnosis. He described himself as "a poster boy for health" since he does not drink coffee or alcohol, nor does he smoke or eat meat. He is also a strong believer in the health-promoting power of exercise. I was given an oncologist at the hospital. And what she basically said was, "What we'll do next is let you recuperate for another five or six weeks and then we'll start giving you chemo." And basically that was it. They didn't give me any advice. Just go home, rest, and get ready for your chemo. I mean, this was the first of my disillusionment with the traditional oncologists. I mean, without needing to have anyone else tell me, I just thought, "This is crazy." I decided I am going to treat this chemo like anything else I've ' learned in life. It's a major battle and I've got to prepare for it, so I'll go out and exercise. I decided that I would just do a heavy regime of walking. Actually, when I was in the hospital, from the day after surgery, even when I was still on morphine, I started walking. I'd go five minutes at a time. And I'd do it ten to twelve times a day. And I did it every single day. And I made them take me off the morphine. Because that's another thing I didn't mention earlier, is I never take drugs. I don't even take aspirins, you know. I basically stay away from all chemicals. I mention this because I think that's all part of an alternative approach, too. I don't like taking drugs unless you have to. Before his diagnosis, Joel knew very little about cancer. He credited conventional medicine with saving his life. But he already had a long-standing commitment to exercise and healthy eating and living a happy life, so he believed that his recovery had to include a focus on what he called holistic health. I believe that, you know, I'm not going to reject traditional medicine. We've come too far. I think it saved my life. Without that operation, I'd be dead now. No doubt about it. But I don't trust traditional medicine because they are so narrow. Like the oncologist that I had. At one point I said to her, "You know, I'd like to discuss some ofthe alternative things I'm doing. Like, I'm doing a lot of exercise." And her response was, "Well, it's never been proven that exercise has ever helped anybody with cancer." And I said, "Well, I believe in healthy eating." "Well, you can eat healthy if you want, but there is no proof. There is no direct correlation between healthy eating and cancer being 89 beaten." And we went down the line of everything that I was doing. So actually at that point I just rejected her and I went out and found another . oncologist. Joel was critical of his first oncologist's stand on alternative approaches, and also her approach to him as a person. She is a scientist and she is using me as a research guinea pig. She is doing chemo on me. She is keeping nice stats. And then somewhere along the line she'll say, you know, "Fifteen percent were supposed to have survived, but 30% survived, so chemo works," or. "Whoops, only 10% survived. I'd better change the dosage." And it's like I'm a guinea pig. And if I do the other alternative things, I almost got the impression that would harm her statistics because it would confuse the data. So she doesn't care about me as a person. She cares about me as a statistic. That's the impression I got. And that doesn't make her a bad person. She's a nice human being. But she's a scientist and her brain forgets about the human person that's in there. And I think that's the Number One thing if I had to talk about mixing alternative and complementary and traditional medicine, is the first thing is, that you treat the patient as a human being and as a person that matters, not as an object. Joel believed he needed to do everything he could to make himself holistically healthy since the surgeon told him that his chances of survival were 15%. So he decided to use both conventional medicine and complementary/alternative medicine. In addition to his focus on exercise and healthy eating, Joel took supplements and Essiac tea, and got injections of anti-cancer vaccines from a physician he saw who is conventionally trained but prescribes complementary and alternative treatments. He's a little bit fanatical—his shtick is healthy eating and he's also got something that I don't agree with. He believes that the body is born healthy and that only the environment can cause it harm. Somehow, that's the same as the theory that people are born perfect and only the world corrupts us. It would be nice if it was that way. And our bodies aren't born healthy sometimes. Our genes are imperfect and they've got problems and they are just programmed to break down or the environment acts upon it, of course, . and causes all sorts of problems. So, whereas, you get people like the oncologist who are taking the position that, "Forget the environment. It has no effect on you. This is just some cancer you've got now. We've got to give you radiation and chemo and operate and then pray for the best." And then 90 (the complementary doctor) takes the opposite—that it's all the environment. It's somewhere in between, is my take on the truth. But basically I really enjoyed going to this doctor because it was nice to be with someone who encouraged healthy eating, and I learned a bit from him about some things that I didn't know. But I don't feel that he emphasized enough things like exercise, you know. He just had this one thing in his mind—healthy eating. That was his obsession. Which happens to be an obsession of mine, so we matched. But I am smart enough to know that's.not enough. Joel described a time near the end of his chemotherapy treatment when he felt this physician's advice was dangerous. I was like somebody from Auschwitz. I was just like a skeleton, you know. And so, I go to see (the complementary physician) either near the end of my chemo or at the end of it. And he says, "You know what you need to do right now? We've got to purify your body. I'd like you to go on a three day fast." And luckily I had enough brains to say, "Give me a break. If I do that, you'll kill me. My body has just lost thirty pounds. My body can't take it. I've got to be fortifying myself right now." So I just ignored him. But the fact that he would do that, is just (pause) and I still go to him. I know peoples' warts and , their strengths and their weaknesses, but it's dangerous, that kind of thing. Joel obviously had a clear set of beliefs about how to promote health and healing and was willing to make his own independent judgments. Once he had time to reflect on the treatments he had received, he became deeply ambivalent about chemotherapy. It probably has some use. It's better than nothing and you might as well do it, but it's so primitive. It's so barbaric and it's so stupid. . . . And I still don't know what the long term effects of. it are. Two years later, I am. still extremely tired. I sleep ten to eleven hours every night. I had a nap yesterday for an hour and a half. In between that I can still go for an hour and half run. You know, I have strength, but. I am just so tired. And I think it's because of the heavy-duty chemo I had. And it's not true of everybody. Because I have other friends who had chemo and they are back to normal now. But I think it must have killed something in me. Or did something to me. But I am alive, so what the hell. During the interview I felt there was a contradiction in what Joel was saying about his decisions to avoid drugs, alcohol, and meat and his decision to undergo chemotherapy. So I asked him about this. 91 Why did I take chemo? Okay, well, what it is, the reason is simple. First, I didn't have the advantage of knowing about cancer. It was like foreign. It was like going to Mars. I knew nothing about cancer. I knew nothing about . chemo. And so when I got it, it was like out of the blue. I mean, I knew nothing about it. I didn't even know what chemo was, hardly. And so, I had two sources of information. I had my oncologist who is just, "It's God's gift to the world—chemo." You know, "Take it and you'll be better." You know, bullshit, you know. And then I had (the complementary physician). So I went to him and asked him what he thought and his approach was, "Well, you might as well take it because, we don't know." He wasn't prepared to say, "Don't take it." But, so both sides of the coin were telling me to take it and I didn't know enough about it. And I still don't know enough about it today. Even today, I don't know. Even knowing what I have gone through, if it comes back, I'm probably prepared to take it again. Even though I know it's such a barbaric, stupid, idiotic thing and that it's probably hurt me more than it's helped me. I often think back, if I hadn't taken it, I wonder if I'd be better off today. I am just so tired of sleeping ten, eleven hours a day. Just wasting my life. As I struggled to understand Joel's perspective, I asked him to clarify something he had said earlier about mistrusting conventional medicine. I'm not sure I said there's a lack of trust of conventional medicine. I think what I was saying is there is a lack of trust with traditional practitioners because they tend to be too focused on a few techniques and how far they've taken us, but I think that they are too narrow. That they are not Open to other things and they are also not open to the greatest hubris of all, which is that what's acceptable in medicine today might very well be considered a crock twenty years from now. That what they might be doing is quite dangerous. And that's just the nature of science. Almost everything in science is soon discovered to be wrong. I mean, even all the great theories that Einstein came up with, they are all superceded. That's just the nature of science. Science is made to be overthrown. . In order to ensure that I understood how Joel had made treatment decisions, I said that it seemed that he had a balanced perspective on science and its limitations as well as a willingness to go with his own gut feeling or his own experience. He laughed and said, Yeah, I'm willing to gamble and try things that aren't scientific as long as they go along with my personality. Like for example, I don't like meditation because it doesn't fit my personality. Meditation stresses me but more than it relaxes me. That's why if you give something that's a "one-size-fits-all" it doesn't work. . 92 To confirm my understanding of how Joel made decisions about treatment, I asked if it was true that if something was not likely to do any harm, he would try it. Precisely. That's it exactly. That's my bottom line. If it's not going to harm me, then I might as well try it because if there is a 5 % chance that it's going to help me, that's 5 % better than nothing. R e f l e c t i o n s Joel's description of his experience with cancer treatment shows how he has "jerry-rigged situated meanings in integral interaction.with context." (Gee 2000) His creation of personal meaning draws on dominant cultural models related to cancer (it is a battle; it is caused by a combination of factors including genetics and environmental influences) and to biomedicine (its treatments are life-saving). He also expresses cultural models that are critical of biomedicine: medical research is exploitive; conventional practitioners treat diseases not persons; conventional medicine is too limited in its scope; and conventional cancer treatments are harsh and primitive. In making sense of his situation Joel also expresses his acceptance of cultural models about holistic health that pre-date his diagnosis: exercise and diet contribute to good health; and drugs and other toxic substances should be avoided. While he accepts some of the beliefs associated with alternative or holistic models, he rejects the view that if environmental toxins are removed, healing will inevitably follow. In his explanation of his perspective, Joel both affirms the legitimacy of conventional medicine and its scientific underpinnings and decries the hubris of conventional practitioners. Similarly, Joel both affirms the legitimacy of holistic health or alternative medicine and criticizes, some of the beliefs and practices of the particular 93 complementary practitioner from whom he receives treatment. While he sees the oppositions in the Discourse related to Biomedicine and the Discourse related to Complementary and Alternative Medicine (e.g., with respect to the question of whether genetics or environmental factors cause cancer) he seemingly has no difficulty positioning himself somewhere in the ground between these Discourses. While Joel holds definite opinions, he does not seem to find it necessary to align himself with a position that is either black or white. Nor does he seem to find it necessary to make his beliefs and actions completely consistent. Joel has created meaning for himself by connecting contradictory Discourses with his already-established approach to life. He is a doer, a pragmatist, an independent thinker, and even more, he is a fighter and a risk-taker. Thus, Joel's situated meanings " are a product of his integration of discourses and cultural models from both Biomedicine and CAM as seen through the filter of his own experience and his commitment to practices such as exercise and healthy eating. The experience of cancer does not seem to have threatened Joel's identity. Rather, he apparently responded to cancer the same way he responds to other challenges, with self-discipline, with a willingness to both accept and be sceptical of authority, and a determination to find his own way. Joel's strong commitment to practices such as the avoidance of drugs makes his decision to agree to chemotherapy especially curious. Joel's explanation of his initial decision and his indication that he would likely take chemotherapy a second time shed light on the way he makes connections between information from external authorities and his own values, beliefs, and identity. His thoughts also reveal the deep ambiguities that cancer patients face. Joel says the explanation for his decision is simple. He was ignorant i 94 about cancer and about chemotherapy. He was getting the same advice from both his oncologist and his CAM practitioner. Although he does not mention this explicitly during his explanation, he had also been given a poor prognosis. Within the context of this threat to his life, given his lack of knowledge and the congruent advice from practitioners on "both sides ofthe coin," the decision made sense. At the time of the interviews, however, Joel was no longer ignorant about cancer. And he was acutely aware of the damaging side-effects of chemotherapy. He said that the chemotherapy killed something in him, that it had probably hurt more than it had helped and that the resulting fatigue made him feel like he was wasting his life. Even so, he said he would probably take it again if the cancer recurs. His comment that, "I am alive, so what the hell" suggests that, for him, life is lived in degrees. His willingness to do chemotherapy again suggests that he can imagine hanging on to life in degrees. . Joel's willingness to consider taking chemotherapy again seems to represent a repudiation of his commitment to avoid toxic substances and a denial of the knowledge gained from his own experience of the treatment's side-effects. But the context is all-important. The link between his values and his identity and the balance between what he knows and what he does not know would shift in the context of recurrence. To say that the situated meanings he has created would be de-stabilized by this serious threat to his life is an understatement. Being a pragmatist and someone who seems to be comfortable with ambiguity, Joel seems to understand that, for him, if the cancer were to recur, all his ideological bets would be off. Chemotherapy may have little legitimacy for Joel in some respects ("it's barbaric, stupid, idiotic") but in the context of recurrence, it seems that survival would be a more important consideration. -95 Joel's situation is not unique. The next patient whose situation is described shows clearly how the decision-making parameters change when the prognosis changes. T h e conversation with B r i a n : "Pull ing out all the stops" Brian is a 48 year old with a background in counseling who works as a manager in a non-profit agency. He has a Master's degree. He is married with two small children. He volunteered to be interviewed after hearing about my research from his family physician. I interviewed him twice in his home: a three-storey, wood frame house in an established East end neighbourhood that has become trendy in recent years. Brian looks fit and healthy. He is clean shaven and neatly dressed in jeans and a sweater. We did the interviews in his front room. The colourful collection of kids' toys and baby paraphernalia that was strewn around seemed incompatible with the subdued elegance of the room's antiques and oriental rugs. Brian was diagnosed with prostate cancer four months before our first interview. After the diagnosis ,he was put on a hormone treatment to shrink the tumour. He was scheduled to have surgery the week after our first interview. Brian began his story by telling me that he came from a medical family. Both his parents were physicians. He is a descendant of William Osier, a Canadian physician who became well-known in the early part of the 20th Century for being both an inspiring teacher and a highly-skilled clinician. But this family tradition did not prevent him from seeking out alternatives. I have cringed at the idea of going to alternatives, but I've gone to alternatives because I also have to differentiate from my family. I've never been thoroughly immersed in the orthodoxy, but the influence has been 96 strong. So, the first thing I did when I got the diagnosis was to go into a similar mode of coping with any challenge which is, learn what I can. Just kind of, partly in shock, but just bat-out-of-hell read, read, read, read, read. Brian read books about cancer and searched the Internet. He decided to change his diet to some extent, and to start taking nutritional supplements and vitamins. He also began doing visualization and meditation. He had already been doing yoga for many years. He tried to find a way to combine the best of both conventional and alternative medicine. The medical orthodoxy that I grew up with and the experiences that I had gave me a really positive experience with medicine and I have a lot of faith in medicine. But I also recognize that there is a lot of blind spots in that. And my Dad was probably the stronger influence in some ways. He's much more conservative. He is tied to the scientific method, and that cautiousness of, you know, you do things according to procedures and you follow things, you know, that sort of stuff. So, I have a lot of faith in medical orthodoxy but I also am a little more adventurous than that scientific method would allow. And as I figured out what is right for me (pause) I know the medical piece is there, as long as you get the good doctors, and I am certainly not blind to the fact that there is a lot of abuse in the system. There's a lot of incompetence in the system. And, the bureaucracy gets in the way, and things like that. So I am certainly not blind to the faults in the system. But I also have a lot of confidence that doctors are well-intentioned, highly educated, skilled, and do the best that they can. So I've got a lot of faith at that level. I guess "faith" is an okay word to use there. But I also don't want to rule out other possibilities. Because paradigms can blind you to other possibilities. The medical paradigm, the scientific method, the scientific stuff leaves out a whole lot. And, I think throughout my adult life, I've kind of chafed against being imprisoned by the orthodoxy of that kind of stuff. When I was in my twenties I left a job that I knew I wasn't going to be happy in, and went down to the States and worked in a social change community using Gandhian principles of non-violence for effecting social change. And lived there for several years, doing campaigns around neighbourhood organizing and housing issues, and anti-nuclear power issues, and anti-war stuff. And things like that. So there is a way in which that kind of looking for alternatives and being open to alternatives has always been part of my life. I Brian began receiving acupuncture and other treatments from a well-known local naturopath. He described some of the tests and treatments this naturopath uses as 97 stretching his credulity. He said, "They are a little beyond the pale, but this naturopath has such a good reputation that I've been kind of swallowing it whole." When I asked Brian to clarify how he made decisions about what is credible and what is not, he talked about the need to balance his own experiences with what conventional medicine might say, especially given the limitations of the biomedical model. He also spoke about the importance of his prognosis. A lot of factors come into it. I think it comes down to a felt sense. An intuitive felt sense of what feels right to me. And that has to have components of both the orthodoxy and my experience. I think the limits of the medical orthodoxy are that it does not allow for the spiritual, it does not allow for emotional factors, it doesn't allow for that kind of inner wisdom. It has to be logic. It's a very, very patriarchal kind of model. And a lot of my experience has been challenging me on patriarchal assumptions and opening up to more intuitive parts of myself. Probably if I was (pause) I mean, clearly my diagnosis was (pause) they were talking of, "This is prostate cancer, and it's treatable and probably curable." We are talking surgical cure. They are not talking management. I think if I was on my deathbed, I might have been more open to saying, "Okay, I'm going to pull out all the stops and do anything." Two months later, when Brian and I met for our second interview, we began by talking about his surgery results. The specimen that was removed had positive margins, so the assumption was that the cancer had spread beyond the prostate. Brian was told that the odds ofthe cancer recurring if he did not get radiation treatment, were about 50 to 60% but the chance of recurrence would be much lower if he had radiation. Brian's doctors recommended radiation, but he and his wife were not sure whether to agree to it because of the side-effects that might occur. These potential side-effects include erectile dysfunction and damage to the bladder or bowel. Brian reported hearing about new treatments that might be preferable. 98 There was an article in the National Post this past Saturday on cancer treatment and one of the things that they found is that if they do low doses, low regular doses on a long term basis of some of the same drugs used in chemotherapy—so, drugs that are already approved and would not have to go through an approval process—that they can successfully fight some cancers without attacking the actual cancer itself. What they do is they attack the formation of blood vessels that supply the cancer. And this is a new discovery and it's making a big, big splash in the newspapers and therefore doctors are being inundated with calls about it. So, I don't know if that has any implications for me. And then previously, in the last month or so, there have been a number of other articles. One about somebody's research here in B.C., about some proteins that if you block the protein then the cancer doesn't multiply and they figure that that approach will be available in about two years for some preliminary trials and that's holding a lot of promise. This thing about the National Post, they're talking about possibly having it ready for some worst-case cancer cases by possibly December or January. So, really soon because the drugs are already approved. But they don't know that it works on people yet. They know it works on mice for that one. ' So there is other things from conventional medicine that are coming up, that are showing promise, that make me wonder whether to do radiation or not because the potential damage that radiation can do is something I'd like to avoid if I can. In addition to looking for conventional treatments that might replace radiation, Brian was continuing to use alternative medicine. I was chuckling to myself when I was anticipating our interview, because when I saw the naturopath last time, he's in a mode of preparing me for radiation. And from his perspective radiation has a significantly drying effect on the body, and so he wants to do things to both cool me down and keep me moist, whatever that means. So he's got a number of things that he is doing with me, acupuncture being one of them and prescribing meds and kind of evaluating the various things that I am taking. I am on quite a regimen of general immune system boosting stuff as well as a lot of other things that he's given me. But he gave me three new prescriptions. And he's got a dispensary where you can buy them, and these three I don't think I could get anywhere else. Well, the cost of the three prescriptions was four hundred and fifty bucks. And so, the reason I was chuckling was I started thinking, "Okay, now how do you decide when you are going to put your faith in complementary medicine or not?" Brian started taking the medications he was prescribed but he was sceptical, especially about the homeopathic remedy, which is a substance that has been diluted many times. It's like this little sachet of sugar. And I think, "What the hell am I doing?" And so, I don't have a lot of faith in it. And one of the things I sometimes think about with alternative treatments is, how much is the placebo effect? Or hOw much is that, "Well, if I spend the money, then I'll believe in it." Well, I don't really believe in it. And so I don't know if I'm just throwing away the money. Brian had also searched the Internet again and had changed his diet based on information he found there. He reported eating more soya products and tomato products. He had also been reflecting on his psychological coping style and had decided he needed to be more assertive. This.had prompted him to make some changes in the way he dealt with family issues. He also began using more aggressive imagery in his anti-cancer visualizations. -Brian talked about how the pathology report had prompted him to realize that he had to make some choices about many different aspects of his life. He agreed that the changed prognosis was prompting him to lean more towards "pulling out all the stops." That's one of the things that this has done. It strips away the, you know, those assumptions we don't question about. . . . And the false impression that, "Yeah. We are mortal but that doesn't really apply to me. I don't have to think about it today." Well, guess what? You've got to think about it. You know? Because I'm young for a prostate cancer. It's got a lot of time to grow. Even though Brian was spending significant amounts of money on alternative treatments at a time when his income was limited by being on medical leave, he expressed ambivalence about whether alternative treatments should be covered by public or private health insurance. 1 0 0 I don't know. I mean, in terms of public policy and funding, I don't see that it's realistic to fund the kinds of choices that I've been making. I am certainly taking my receipts and sending them to my extended healthcare plan. Some of them have been bounced back saying, "Sorry we don't cover this." And that's what I expect to happen with the $450 prescriptions that I got. I mean there is so many experimental and unproven and hare-brained ideas of treatment out there. Thatl wouldn't want to see covered. As a taxpayer, I wouldn't want to see them covered. And if people want to try that, that's their choice. I mean, this is where a lot of the thinking around, "Do I believe in the medical model or not?" comes down to where the rubber hits the road. Am I willing to pay for it with my tax dollars? And do I want it covered for my expenses? And then it also brings into question the monopoly that the established medical and scientific regime has. How did the doctors get in such a privileged position? We hardly question that, you know. I don't know. I guess my faith in the medical system is stronger than my faith in the complementary. And I wonder how much my participation in complementary medicine . . . when my faith in it is because of what complementary medicine can do or because of the placebo effect. And I guess you can say the same thing of conventional. R e f l e c t i o n s Brian's experience shows how the prognosis influences the judgments patients make about the legitimacy of different treatments. At the first interview, Brian believed that his cancer would prove to be treatable through surgery alone. He was using CAM approaches to support his mental and physical health generally but was assuming that conventional medicine would be able to cure his cancer. At the time of the second interview Brian was in a very different situation. His changed prognosis unsettled the balance he had initially created. He now had to find a different balance that took.into account the probability of recurrence and the possibility Of side-effects that would affect his quality of life. He was trying to make decisions rationally but could not ignore the anxiety that his changed prognosis had awakened. 101 During the first interview, Brian linked his exploration of CAM to his identity: he needed to establish himself as independent from the family medical tradition and he had a history of questioning established cultural paradigms. He seemed comfortable making situated meanings on the basis of a variety of factors: his faith in biomedicine tempered by his awareness of its limitations; his previous use of alternative approaches such as yoga; his naturopath's reputation; his own experience and intuitive wisdom; information from books about cancer; and information from the Internet. Like Joel, Brian responded to the challenge of cancer the same way he had responded to previous challenges. In Brian's case this meant reading as much as he could and integrating this information into a perspective that had strong roots in orthodox medicine but allowed for alternative truths when they were reinforced by personal experience. During the second interview, Brian's struggle to find coherence and comfort in the face of his changed prognosis was palpable. The changed context had caused him to examine the available options more carefully, but it seemed that the criteria for making judgments had themselves become de-stabilized. Brian believed the cultural models that assert a link between cancer and emotional states, so he was using interpersonal strategies and visualization techniques that reflected a new commitment to becoming a more assertive person. He also believed in the connection between diet and cancer, so was increasing his intake of foods that supposedly had cancer-fighting properties. The legitimacy of strategies based in these cultural models was not in question because the models fit within Brian's pre-existing worldview and he had little to lose by pursuing them. However, the legitimacy of his other options was more difficult to determine. 102 Brian was looking to medical science for a new breakthrough that might save his life. His faith in conventional medicine was bolstered by media reports of promising new treatments. But he was also acutely aware of the limitations of medical science since the currently available conventional treatment could not increase his chances for survival without risking life-diminishing side-effects. Further, he was beginning to question the privileged societal position of science and biomedicine. At the same time, Brian was using alternative treatments that had been prescribed by his naturopath, even though he was sceptical of the theory underlying them and their efficacy. He expressed different degrees of faith in these alternative treatments at different times during the interview, indicating that he continued to be uncertain about their legitimacy. Further, he wondered how much of their apparent efficacy was attributable simply to the placebo effect. For Brian, the cost of treatment was connected to the question of legitimacy. As an individual patient, he had enough faith in his naturopath to pay for treatments that, as a taxpayer, he did not consider legitimate enough to be covered by insurance. For Brian, the economic considerations were where "the rubber hits the road." Belief in a treatment approach is one thing, paying for one's own choices is another, and supporting the inclusion of a treatment in public health insurance is different again. In Brian's attempts to create coherence, he relies on the biomedical discourse that is so familiar, as well as some alternative discourses that fit within his identity as an independent thinker, including discourses that are critical of biomedicine. But none of these are sufficient to address the prognosis that has brought his mortality to the 103 foreground, unsettled his identity and shaken earlier situated meanings.2 The turmoil and vulnerability he expressed stand-in stark contrast to the confidence of the next patient. T h e conversation with Angela: "Eras ing , rearranging, and creating personal meaning" Angela is a 54 year old retired teacher. She is separated from her husband. She has two grown children. She volunteered to be interviewed after seeing a poster about my research at Hope House. I interviewed her twice in her home: a basement suite in East Vancouver. Angela is short, with a matronly build and short, blonde hair. When we met she was dressed comfortably in grey sweat pants and a bulky, red, knitted sweater. Her apartment was small, with low ceilings. But it seemed cozy and filled with light. Both times we talked, we drank herbal tea, ensconced in overstuffed arm chairs. Angela was diagnosed with breast cancer when she was 46. At that time she had a partial mastectomy, plus radiation and chemotherapy. She also began seeing a traditional Chinese medicine practitioner. Six years later, she had a recurrence in her ovaries, so she had a hysterectomy. A month later, she had another recurrence and had further abdominal surgery. She was told that she did not have much time to live. Chemotherapy was suggested but she chose not to do anything radical, although she agreed to take Tamoxifen. She continued seeing a traditional Chinese medicine practitioner. She has been taking Chinese herbs every day since then. She does many other things that can be categorized as complementary or alternative medicine. She meditates; she attends a group that does movement exercises designed to increase awareness and release emotions; she. 2 When Brian reviewed this profile, he told me that he had undergone radiation, but that his PSA count was still high. He had stopped seeing the naturopath because he did not perceive any benefit from his 104 is part of an ongoing support group for cancer patients; and she has attended residential retreats for cancer patients. As she put it, "I am forever constructing and creating some thing or another to maintain my health and to celebrate it." She has CAT scans on a regular basis and these scans show no signs of cancer. Her latest check-up was a month before our first interview. Angela described her conventional treatment as "rugged" and "very, very, harsh." Not only were the treatments harsh, but so was the way she was given the diagnosis. I was just given (the diagnosis) in the hospital and that was a devastating thing and I didn't know much about cancer at that time, other than what is the common—I call it a myth. Cancer seems to equate to death. So all of those cultural ... all that stuff came forward. And when I went to see the surgeon, fortunately my daughter was with me, and the surgeon said, "Well, yeah. It's cancer and if you don't do something you'll probably be dead in about six months." And he rattled on saying some more stuff and my daughter said, "You need to stop for a minute. Excuse me. YOu know, back about five minutes ago when you told my mom she would have six months to live. I don't think she's heard anything that you've said since that point. I really don't. I think she feels so scared. I don't think she has heard you. So maybe you could just back up and go over that for her again and fill in a little bit." So he did. Because she was right.T just like, (pause) the emotion took over. And the intellect couldn't follow the language that was being presented to me. Angela's decision to use traditional Chinese medicine came out of a long-standing interest in the Chinese system of philosophy and living. Prior to her diagnosis, she had been eating macrobiotically, meditating, and living a simple lifestyle in the country. Since the counter-culture wave of the sixties she had been a student of Eastern spirituality, reading authors such as Krishnamurti, the Dalai Lama, and Thich Nhat Hanh, a Vietnamese Zen monk. Facing her own mortality gave her increased incentive to put their teachings about kindness and compassion into practice. treatments. 105 One of the gifts that I've received from being told that I'm going to die soon is that I have had a lot of really deep changes in the way I think and how I relate to the world. Really deep. But, the way of going for alternative or complementary systems of medicine or anything, is not new to me. . . . The first round of, "You might die," put me into a mode of being committed to sticking to some of the things that I knew and continuing with some of the practices that I was involved in. The second was the ovaries, and then it was like, "Oh, it's here again." And, the last one was just like, "Well, this is for real." It really, really could happen. And it made me (pause). No, it allowed me—it didn't make me at all—it allowed me an opportunity, which I took, to admit that I really wanted to live. That I really did. And so I got ,really, really, really clear that I wanted to stay alive. And then I decided that I would play it as if I was going to. And I would honour the process that I was in, even though it was very, very frightening. I would honour and hear the diagnosis and all the information that was given to me. And I'd hear the prognosis, but I wouldn't buy into it. I was willing to say, "I will take the attitude that cancer can be cured." And I know that isn't the common paradigm, or notion around cancer at the moment, but what have I got to lose? Why not embrace it? So I did. And I do. And I consider myself cured. And I don't have cancer any more. And I went about investing my life's activity and energy in practicing and celebrating life. So I continue to keep my choices in that realm of affirming life, and knowing that if I died, I died. I have chosen to have the spiritual component always there. I don't see that we are only our bodies and I know that I am not my disease. I am not my job. I am not my (pause) or at least I am not only my disease and I am not only my job and I am not only my role as a mother and wife. Like, this is happening but isn't who I am. It isn't who any of us are. And I am more interested in seeing beyond that and actually acknowledging myself and all other people for, you know, being what I call the divine beings, or you know, cherished entities. So, the fix-it thing is a component. It has to be. I mean if it wasn't for surgery and chemo I would be dead, possibly. There's good service but it's only one component. And it's not the only thing. And I also think that I participate in the disease to some extent in creating and living it and through it. I don't have a direct cause and effect like, if you think bad things and you don't eat well, this is cause and effect. I don't think that is useful to say, "You do this and this is what will happen." But it's along the idea that there is more going on than we can possibly have an idea of, and I don't know whether I genetically was predisposed to cancer. I don't even know if it's a disease. It's something that happens. And I know we believe that cancer is a disease and it's this and it's that, and those are things that we believe but we also used to believe that the earth was (pause) you know? (laughs) And people were burned for thinking differently. When I asked Angela to clarify what she meant by saying that she wasn't sure if cancer was a disease, she expressed a perspective that reflected her years of experience with Eastern spiritual thought and practice. If I say cancer is a disease I'm taking it out of myself. I am separating it. And I am putting it in the realm of the duality of—it's bad and it's separate and it's something that has befallen me. And that there is a reality which says that cancer is inevitable. That it is bad. And diseases are those things. They're something that's contagious. They're viral. They're bacterial. That one is searching for the cure. That it can be eradicated. It is something out there. The enemy is out there to attack; And, I, of course, lived with that. That's how we are. And recently, I've been considering and practicing and I'm finding it very useful, not to pursue it in that vein at all. And to allow for the possibility that we don't know what any of this is. We don't even really know what a viral infection is. We don't know what disease is. We are just frightened. We put it out' there. We try to eradicate it. And so, it has to do with, this is an occurrence. This is an experience. This is a part of being human. This situation occurred and I was in the hospital. These people did what they do and they're trained to do. And they did their thing and I did my thing. And my family did its thing. And we all did visiting and we all did our participating. Sort of like, you know (pause) living. What's the difference between doing that and going and having a meal? And another component to that, or another way of making a mental module or construct for myself, is looking at it that I'm living the mystery of life. I am not solving it. I am living it. . . . One time I was sitting there and I thought, you know, I'd like to be able to see everything as sacred. And then I went, "Well, then do it! Go for it." (laughs heartily) And as I started to go for it, then how can I say, "Cancer is a disease. It's a bad thing." If everything is sacred, then that means I am not allowed to choose. I can't go down that road of thought. Angela extended these ideas to the debate around whether CAM is as legitimate as medicine that is based in science. She contended that the solution was not to believe in your beliefs. Science is a belief so that's where (proponents of conventional medicine) are getting tricked. What they don't understand is that they believe that science is something. But it's a belief. And when I'm taking the Tamoxifen I'm taking it and I'm allowing myself to participate in the belief that Tamoxifen, you know, sits in the chair where estrogen would like to sit, and doesn't let it sit down. I'm choosing to accept that. That's a belief. It's not anything better 107 than when I go to an acupuncturist who is saying, "Okay. It's your kidney meridian that's weak." It's a belief. It's all belief. ... But anybody who has gone anywhere along the lines of Einstein, who has traveled a little bit with him, knows that there is no such thing as "fact." And the scientists are just hoodwinking themselves for pure self-aggrandizing and so (pause). It feels good to be important. Why not? (laughs) Angela was comfortable combining approaches from both Western and Eastern medical systems and respected what each was able to contribute to her healing. But she expressed some criticisms of Western medicine. The Western doctors she saw expressed no interest in her use of CAM, even though she had outlived her prognosis. In addition, her Western doctors had no communication with her CAM practitioners. The TCM doctor she saw, in contrast, supported her use of Western medicine. The Chinese doctor I go to was very, very much in synch with western medicine and read all my path reports, wanted me to do all the tests and kept saying, "No, no. We have to work together. We have to work together. They are complementary. Both work. Need them both," he would say. "The Chinese medicine will take care of some of your symptoms from the drugs and helps speed the cleansing process. We'll support your emotions. We'll support different things and get you towards a whole well being, including your spirit, your emotions, your body. And we'll do that, but the diagnostic component and some of the interventions like the surgery, some of the medicines, definitely all the diagnostics are really essential. They work together and they need to be going together." So it was easier for me to be with him because he didn't separate out. He used everything and respected everything equally. Angela also noted another important difference between her conventional practitioners and the TCM practitioners she saw. The difficulty I have—which is a sadness—and something that concerns me a great deal with the Western medical model and the way that it's practiced, is the form of communication that it takes. And I have talked quite a.bit about this with other cancer patients and it's fairly consistent. And the problem is with the process of being positive and supportive. For example, with myself, at no time has any doctor—Western medicine doctor—said to me, "There's hope." What I've been given is statistics, that this is what could happen, you might have this much to live. So it's all fear-invoking and it's dismal. And 108 you feel very engulfed in a hopeless situation. And you feel that you are dependent on this medical model. When you are that vulnerable, you are that sick, you are that in need, what you hear is, "If you don't do chemotherapy you are doing to die." That's what you hear. It isn't the exact words and so, you know, you can't go to the oncologist and say, "Why did you tell this woman that she was going to die." And the oncologist would say, "I didn't. I was just giving the statistics." It's a cop-out. I think that both things can be given. The hope and the reality'. Or the diagnosis and possible prognosis. But bring in hopeful scenarios. I mean, I am a case at hand. Honestly, the oncologist who met me last December - thought I wasn't going to make it. I am sure that oncologist isn't saying to somebody who comes in, like I did a year ago, "Well, I know a woman, came in with the same MO as you've got, she's still trucking along." Whereas, when I was talking with the Chinese doctors that I've gone to, the thing that they start out with is, "This is really serious and the first most important thing is hope. Believe. Have faith. Be hopeful. That's the first most important thing. Is have that hope." Well, when somebody says that to you, do you ever listen differently! Do you ever feel different! And that is what has sustained me from the medical people I've been with is that point of view of "We're going to work really, really hard. Have hope. Hang in there. It might not be very pleasant or comfortable but there is hope. There has been success." Neither of the doctors—the Chinese doctors—gave me misinformation or diminished the seriousness of the situation. They addressed it with the same clarity and intensity, but they added the component. "I like you. I'm going to work hard and there is hope." Angela referred to this failure to understand how vulnerable and suggestible patients are as "the Achilles heel of allopathic medicine." She believed that this separation of doctor and patient was a strategy that medical professionals used to protect themselves. I think the doctors have learned how to protect themselves and they don't realize what they are missing. And they don't understand that they don't need to protect themselves. I've often wanted to say, "Well, look. It's not going to hurt you any less, when I die, if you hold it all in now, or whether you have a relationship with me—that we communicate. It's still going to hurt the same. The hurt is going to be the same. Angela also talked about how statistics are used when the diagnosis is given and how these exacerbate the fear and vulnerability that patients feel. 109 The statistics were not interpreted for me. I didn't ask for interpretation because I think, in part, I've been in education and it's like are giving grades. There's all sorts of statistics. So I've had some experience with., statistics so I didn't bother asking. If you had no understanding of statistics, and that's what I'm listening to with friends and other (cancer patients). Is that they don't understand what.the statistics are, and it's terrifying them. They think it's real. Like they don't understand that it's just a statistic. They don't understand that there's the whole process and they think it means, in reality, this is what's going to happen. Different than, "These are figures that we use to (pause)," you know. That's where I'm hearing that it's terrifying for them. It was hard enough for me to hear that, and I know, what the process of developing statistics is. And I still found it very disturbing and I had to go home and do my own erasing and rearranging and creating my own meaning for this information. But I know how to do that. And I choose to do that. I was able to get through it, I don't think that's common. I think it's very hard for people if they don't know what statistics are. Angela argued that, in order for the kinds of problems she had experienced to be avoided, patient-practitioner relationships had to be based on a different model than was typical in Western medicine. That's where there has to be some kind of realization, and I see it growing amongst my friends, of the patient's input. And this process of hierarchical thinking and hierarchical behaviour . . . When I go to see any doctor, I do not go thinking that they are superior to me or have any more information than I do. I see them as a human being equal to myself who has information that I may need and I don't have. And I have information that they may need and don't have. And we are two people sharing. And I won't buy into, "Somebody knows and somebody doesn't." And I think that's what we have to focus on. Is that there isn't somebody who knows and somebody who doesn't. There isn't somebody who has the answer and somebody who needs that answer. And patients have to start seeing themselves as going to this person to share and to share something from themselves so that they are equal. Like their honesty of experience and their questions. It's definitely a two-way thing. And holding that notion, I think, is the trick. R e f l e c t i o n s When Angela was diagnosed with cancer, she was already aligned more with Eastern ontology and epistemology than conventional Western ideas. She had been living a .110 counter-cultural lifestyle for decades. Cancer did not threaten her identity or her ideas. Instead it strengthened her resolve to practice and embody her spiritual beliefs (including the resolve to avoid being attached to beliefs). She continued to engage in individual and group pursuits that she saw as contributing to her growth and healing. The legitimacy of different approaches to healing did not seem to be a crucial issue for Angela. She considered every approach legitimate. Every approach had its place and deserved to be respected. And even though every approach was fundamentally limited by its being a construction, a belief system, this did not make the system illegitimate. It simply made the system more ephemeral than most people realized. For Angela, this was all part of living the mystery of life. She was comfortable taking part in the conventional Biomedical discourse when that was appropriate and necessary and equally comfortable with the TCM discourse and other CAM discourses, which she saw as complementing Western medicine. The coherence she made of her situation was rooted in her commitment to value not-knowing instead of striving for a linear, logical certainty. In making sense of her situation, Angela rejected many Western cultural models. She chose not to make cancer part of her identity. She chose not to buy into the cultural "myth" that cancer is incurable. She even questioned the dominant cultural models about the nature of disease and the actuality of science. Instead, she drew on Eastern models about non-duality and non-attachment. Her alignment with these alternative models made it easy for her to integrate divergent beliefs and practices and to reframe information and beliefs that she felt did not serve her (e.g., the statistics related to her prognosis). I l l Angela's emphasis on the way that Western and Eastern practitioners in her experience either withdrew or provided hope is interesting in light of her stance on beliefs. It may seem contradictory to assert on the one hand that beliefs should be transcended, and on the other hand, to criticize conventional doctors for failing to inculcate a belief in the possibility of healing. But Angela's stance may well be a reflection of her awareness of the power of language and the way entire Discourses are invoked through the use of certain words and behaviours. This awareness likely comes from previous experiences of examining beliefs and their origins in social conditioning and attempts to disengage from deeply-held beliefs (e.g., her earlier rejection of the dominant Western worldview and her adoption of an alternative Eastern worldview). Angela described how conventional physicians use statistical rationales for their treatment recommendations and are careful to maintain a distance from their patients. This stance of scientific objectivity and of statistical certainty is an integral part of the Discourse of Biomedicine. Angela was able to resist this discourse, to erase and rearrange the information to create her own meaning. But even she found her interactions with conventional doctors disturbing. And she believes that most patients invest the information they are given with more predictive power and more veracity than they should. Angela suggests that this invocation of the weight of Biomedicine is especially harmful when it is connected with a diagnosis of cancer because it comes at a time when patients feel dependent, vulnerable, and afraid. And she suggested that this Discourse is being used as a shield against practitioners' own vulnerability and fear. 3 Several months after our second interview, Angela was diagnosed with a new primary cancer. She underwent further conventional treatments, including chemotherapy. She continued using alternative treatments. She died two years later. 112 The next patient's situation provides an example of how some people are enacting new roles with respect to health care decisions that run counter to the expectations of the Biomedical Discourse. T h e conversation with M a r c i a : "This is my body and I decide." Marcia is 50 years old, single, and a lesbian. She is self-employed. She is tall, slender, with very short, graying hair. We met for one interview in her basement apartment. The combination living room, dining room, and kitchen was small and spare. A folded-up massage table' leaned against one wall. The space had a Zen-like quality of serenity. Marcia was diagnosed with breast cancer a year before our interview. When she first received the diagnosis, she did not want to have any conventional treatment. As she put it, "I just didn't, couldn't see the value in any of those things." She immediately got in touch with an alternative practitioner whose approach to cancer she had read about in a local New Age magazine. On the basis of the stories of patients who had been helped and the practitioner's confidence, Marcia decided to begin the treatment. She paid $25,000 for an immune system-boosting regime that consisted of very high dosages of vitamins (including intravenous Vitamin C), minerals, and other supplements, including protein supplements, and digestive enzymes. She was giving herself an injection and taking 250 pills every day. When I asked her if there was any scientific research regarding the approach she was using, she responded angrily. What's that going to tell me? Tells me shit-all! It doesn't tell me anything. What's that going to tell me? That people of undescribed situations, undescribed ages, undescribed races, if they took a placebo, this happened and if they took something else, that happened. Placebo alone is worth 30%. Chemotherapy, I was told, had a 12% chance of helping me. Placebo would be better than chemotherapy. . 113 Well, it's the same when I go to a doctor, what can they tell me that is going on in my body? Nothing. What are they testing? What are they noticing? What are they picking up in the bodies? Like I don't get it. Every scientific advance has been made by intuition. And they want to discount intuition. It's like, excuse me, I don't get it. Marcia rejected her oncologist's recommendations about chemotherapy and radiation but eventually agreed to have a lumpectomy to remove the tumour. She described being "shocked" by the conventional treatment she received at the time of the surgery. She felt she was not given enough information about the surgery or about the post-surgical care she needed. After six months on the intensive alternative treatment regime, Marcia went on to a lower-dose maintenance program. Within a few months, she was diagnosed with cancer again, this time in an axillary lymph node. She then returned to the intensive alternative regime. Marcia expressed a strong and long-standing disenchantment with conventional medicine because of its inability to provide her with knowledge about what was happening within her particular body. I never had anything to do with it in all my adult life. I've done all my healing through bodywork and psychic, intuitive stuff. In most cases, conventional medicine is not sensitive enough. It just can't tell me what's going on in my body. All it can do, all they can do is say, you know, "Based on what I've seen or what I know, I'm going to give you this." "But do you know what's going on in my body?" "No." And they still don't know what's going on in my body. All they can say is that I have a lymph node that is cancerous. They can't tell me how my metabolism is doing. They can't tell me what organs in my body are stressed. They can't tell me where the cancer is in my body. Like, where is this scientific advance? You know, .they can't tell me anything. All they can say is, "It's here. We'll cut it out." What is that? I mean, I want to know what's going on in my body, r Marcia also objected to the conventional doctor-patient relationship. 114 Sometimes it seems like, you know, if I go to them, then it's like they get to decide. And it's like, no, no. no. I go to you and / get to decide. And a lot of doctors don't seem to understand that. Even my surgeon. They don't seem to understand that this is my body and I decide. So there is a lack of trust and a lack of credibility in dealing with people who don't know that this is my body and I decide. So it's partly fear and avoidance. So that's definitely an element of it. It's like this is not safe for me. I'm not being taken care of. I didn't feel taken care of with the surgery. You know, don't feel taken care of. My needs are not being met. You know, it's not supportive. It's not kind. I am not being properly informed and my choices are not being recognized. She contrasted conventional medicine's inability to reveal what was happening in her particular body with the ability of CAM approaches. And then on the other side of things, I think part of it would be over the years tuning in to different things that have felt wrong in my body and trying to find out, so what is it? And finding the best source of information is people who have some access to intuitive senses. So whether they use kinesiology, or the muscle testing, or you know, like iridology, or something (pause); Somebody who can read my body and say, "This seems to be going on in your body right now. And this is what I recommend from my practice that • , would get it organized." And there are many, many different disciplines that can do that. And, you know, they are all different and they all have a different thinking and different kinds of things that they do. But it seems like there's many different ways to do that. In her description of her perspective about the nature of health and healing, Marcia said that she believed the mind played a central role in the process of achieving harmony or balance. She also talked about what she believed to be the cause of her cancer and the role that emotions played. I see cancer as being caused by environmental stresses. That's my personal opinion. And that's why there is so much of it. And it's an opportunity to do (pause) for me (pause) it's been an opportunity to do emotional work, primarily physical and emotional work. Like it seems like spiritually, I'm okay. But I've done a lot of physical and emotional work. Because what cancer brings up is death, and one of the things to deal with is will-to-live. . So all the places where my will to live is weak have come up and have had to be addressed. So it brings up (pause). Last year I was pretty well traumatized the whole year 'til about December. So when I first had cancer, it was like a physical (pause), you know, recovering from the surgery and surviving the 115 day, and can I do housework, and what help do I need. And when that started to calm down, willing-to-die came up. And I spent the rest of the year willing-to-die. ... I didn't know I was willing to die. I had no idea I was willing to die. . . . It's probably different for everybody. But when I was trying to figure out (pause) okay, is there a meaning or something associated with my lump, when I still had a lump, the issue that came up for me over and over again was loneliness. And I am very independent and self-sufficient. And as coping mechanisms for loneliness they've been very successful. I am not aware of being lonely. People asked me if I was lonely and it was like, "Nah, I'm fine." But when it came right down to it, you know, from my childhood and whatever, there is a certain sense of isolation. And it's very well protected and organized and you know. It takes a lot to unravel it. And to allow the distress to come to the surface. When she spoke of the factors she believed contributed to her illness, Marcia mentioned that in the years before her diagnosis both her parents and two other family members had died, so she was experiencing a lot of grief. She related this to the Taoist idea that extended depression causes weakness in the organs. She summarized the emotional cause of her cancer as being a long-standing issue with loneliness or isolation that was exacerbated by the grief arising from her mother's death. She also mentioned that both her parents and her aunt died of cancer, but she seemed not to consider genetics that important. She believed that the emotional factors made her vulnerable to environmental factors that weakened her immune system. I would say the actual cause of my cancer would be vaccines when I was young. Having been on the birth control pill in the sixties and seventies when it wasn't a very good pill and I was under twenty. Lack of good quality air from having lived in various cities in my life. I would say those would be what entered my body and weakened my immune system. Now, why do / get cancer instead of somebody else getting cancer would be the (emotional) factors. Marcia said that the conventional doctors she had seen were upset that she was not using conventional treatments. She was indignant that they did not give any credence 116 to what she was doing to promote her healing. She also believed that people like her who reject conventional medicine are in turn rejected. Well, if you don't do what you are told, you are disappeared from the awareness. Like all the studies are done on good patients! So anyone who is not a good patient or who isn't following the rules, they go into nowhere-land, right? Now you do not exist as a cancer patient. I don't exist as a cancer patient. I am a non-existent cancer person. R e f l e c t i o n s Marcia is an example of the small minority of cancer patients who reject conventional medicine and use unproven treatments, even when conventional medicine offers some chance for healing. Marcia's rejection of conventional medicine pre-dates her cancer diagnosis. Her criteria for medical legitimacy go beyond the usual concerns about safety and efficacy. She requires that a credible healing approach be able to tell her exactly what is going on within her particular body. It is not enough to have knowledge about "the body" in general or about groups of patients. Medical science is discounted because it is - not sensitive or specific enough to shed light on her individual situation. In addition, developments of medical science (i.e., vaccines and the birth control pill) are seen as toxins that cause cancer. For Marcia, legitimacy seems to depend on there being a connection between a plausible explanatory model and her own experience. Marcia's process of making decisions reflects her allegiance to unconventional cultural authorities, practices, and models. The Biomedical Discourse does not hold as much weight as Marcia's own assessment of a practitioner's personal power, her trust in alternative information sources, and her perception of a treatment's fit with alternative models about the body that she has come to believe. 117 Marcia objects to the expectations about the patient-practitioner relationship that are embedded in the Biomedical Discourse. She very clearly sees her body as her territory, her domain. She has developed some beliefs about how things work in that domain in the course of working through previous disharmonies and she is not willing to surrender the agency she considers crucial to good decision making. But she is willing to consider knowledge gained by others who have legitimacy in her eyes—those who are intuitively sensitive who can "read" her body's signs of distress. In explaining her use of alternative medicine, Marcia draws on cultural models that are not only associated with alternative medicine: e.g., the model that connects cancer with immune system weakness and the model that affirms a patient's right to choose. She also draws on cultural models about intuitive knowing and the links between psychic factors and illness. These models differ from biomedical models about the body and the causes of illness, and are more radical than mainstream psychosocial models that posit links between emotions and health. The importance she places on her discovery of her willingness to die (as opposed to the will to live) and her attention to the feelings of loneliness and isolation that she connects to the lump in her breast are congruent with models that posit emotional and psychic healing as the foundation for physical healing. Marcia seemed strongly identified with some parts of the CAM Discourse. So strongly identified in fact, that she was willing to stake her life on her allegiance to that Discourse.4 And yet, she wanted her identity and her agency acknowledged by the conventional system. She was distressed that, because she was using a treatment that was not considered legitimate, the legitimacy of her personhood was denied. She had 118 disappeared into nowhere-land, become non-existent. Her experience is a poignant demonstration of the power of Discourses to both create and erase. The next patient also experienced this power of erasure, but in a different way. T h e conversation with L i n d a : "The terror nobody is addressing." Linda is a 40 year old office administrator. I interviewed her twice in her small basement suite, where she lives alone. She is Chinese, with short dark hair, and a lively manner. Linda was diagnosed with breast cancer just over a year before our first interview. She had surgery followed by chemotherapy and radiation. When she was on chemotherapy she also did acupuncture and took Chinese herbs to boost her immune system. It was natural for her to use traditional Chinese medicine because it was part of her culture and she believed in it, but she had to stop when she could no longer afford it. She also did yoga and went to a number of different support groups. Linda had a very hard time deciding whether to do chemotherapy. She was given frightening statistics regarding the probability that the aggressive type of cancer she had, would recur. Chemotherapy and radiation were presented as being able to increase her chances for survival, but she was concerned about their side-effects. She did as much research as she could. But in the end she made decisions that she felt were pretty arbitrary. What happened was I was probably doing the dishes or something like that, and I just, I had all this information in my head, it was all conflicting, it was totally up to me, it was (pause). It's like they take all your power away and then they tell you, "It's your decision." Do you know what I mean? They 4 About a year after our interview, I spoke with Marcia and she said that her conventional doctors believed she was dying, although she believed her alternative treatments were working. About a year after that, when I tried to contact Marcia to have her review this profile I learned that she had passed away. 119 either don't give you the information truthfully, or they give you misleading information, and they sort of make you feel like, "We're God. You should do what we say." But then they won't take the responsibility for that. And they let you make the decision although you are not an oncologist. You don't know anything about this and you need help with deciding it. They won't (pause), they won't do that. So, (pause), because then you could sue them. Right? And it was so frustrating because I kept finding more information and I kept thinking, "Okay, this is going to (pause)." I would phone this place, I would phone that place. I would research this, research that. Right? And I would always be feeling like I wasn't doing enough, because I would hear somebody else who had got more. And so it got to the point where I think I just rebelled. Like I don't know what other women would do if they didn't have a rebellious nature. In a way I am glad that I have a rebellious nature, because I just said, "That's it. Fuck it. I can't do this anymore. I am going to do that. And I am going to do acupuncture. I am not even going to think about it any more because I can't." It was too hard to try and find an answer, right? During the course of her treatment, Linda decided she needed emotional and spiritual support. She tried to find what she was looking for in several different groups. Some were in conventional settings; others were in complementary/alternative settings. The support group, instead of being about what we were going through and how it affected our lives—that kind of stuff, which is what I assumed a support group is for— instead of being about that, it ended up being about exchanging information. So one woman would say, "Oh, well, I'm doing this. I've got this book and I'm doing this." And then another woman would go, "Oh, well, I didn't know about that. So could you tell me about that." And basically though, it never ends. Because there's a zillion cancer books out there. Most of them are useless. And so, it was this competition and it was all to allay this terror that nobody was addressing. -And what it did to some of the women, me included, was we just got totally fed up. We couldn't take it any more. And so we went back to eating hot dogs or whatever it was that we did. We went right back to the way we were before we got cancer. And we ended up just doing what made us happy. Whether that was proper or not. Whatever form that came in. There was no room for your reality if your reality was not (pause) I guess a conventional reality. Which would be that you are not too poor, you're not too dark, you're not too negative and you talk a lot about appreciating things and keeping positive and stuff like that. Then you get, you do get better health care. You get talked to nicer in the hospital and stuff if you do that. I learned to do that. I mean, I did that after a while. And if you make sure you are grateful to the doctors. Like, at first, 120 after my surgery and before my chemo, was a really hard time because I was in shock still and then all of sudden I had to deal with being scarred and so I had to deal with this whoie body image thing. Which was never addressed. Never, never, never addressed. I couldn't believe it. You know, and I tried to bring it up. And, nobody would acknowledge it. I just dropped it. But. it was hard because I was challenging the oncologist. I was saying, "Well, I want a second opinion. I want this. I want that. What about this? What about that?" Because I was angry and I was terrified. I saw really quickly that if you aren't that way, you know, appreciative and basically submissive, right? Then they will withdraw. They will withdraw efforts to help you, right? Iff was thankful all the time and agreed and kind of, you know, said, "Oh, thank you," you know, whatever, then I would get more information, right? If I said, "I want a second opinion. I don't understand why this is , happening," then I would get less information. They just wouldn't come forward with it. They didn't have to. I mean, nobody knows what to do about cancer but they won't admit it. The medical profession cannot admit that they don't know what to do. So they put it on to you. So a lot of the damage, I think, happens when you're sort of demonized for having (cancer), right? Then you are told to be positive. Which means that you can't be depressed, you can't be angry. You can't be scared. You can't be sad. You can't grieve. You can't do anything. So what would happen is that I would be in these support groups and you could feel the terror right underneath the positive thinking. It was like, right there. I mean, cancer is cancer and people react to it like, "Oh, my God, it's the worst thing in the world." And yet in that venue, there's this denial. Right? There's a denial of what it actually is. Like it basically, what it is, is that you will never have your life back again. You will never know ever again how long you have to live. So your whole way of living has just been destroyed. And you could talk about that, but you have to end it on an up note. So you'd have to say, you know, "My whole life has changed but I am so grateful for every day that I have now." Like you have to do it that way. Right? The amount of denial is the kind that makes me feel like I'm in a cult. It's so pervasive. I asked Linda if she experienced this phenomenon in complementary and alternative settings or just in conventional ones. She replied, "In some cases with the alternative people, they even wanted it more because the New Age stuff kind of got in there too. So, there was even more of that, 'You are your disease and you can get rid of it.'" 121 R e f l e c t i o n s Linda's situation shows how different medical Discourses confuse and constrain patients. With her diagnosis, Linda found herself entering what could be called the culture of cancer. Linda saw as being destructive enough to be called a cult. She felt that certain emotions and behaviours were required of cancer patients while others were taboo. Being given the diagnosis brought her under the influence of cultural models about what cancer means: it is "the worst thing in the world;" cancer patients are "demons;" as well as models about how patients are supposed to respond to cancer: e.g., by eating right, and by expressing the right emotional attitude—upbeat, grateful, and positive. Linda felt that all of her emotional pain—her uncertainty, her anger, her grief over the loss of her breast, and the loss of her taken-for-granted life, her fears about death—was disallowed, not only by the conventional cancer discourse, but the alternative cancer discourse as well. In fact, the alternative cancer discourse may be even more dismissive of patients' suffering because of the alternative models that assert that cancer and its healing are dependent on emotional, psychic, and spiritual states. Linda's comments expose the deep contradictions in the dominant cultural models: cancer is terrible and the appropriate response is to be confident and grateful. Not only are cancer patients supposed to behave in certain ways in order not to make other patients and professionals uncomfortable, but, in Linda's experience, the quality of the care they receive depends on their compliance with the cultural models. According to Linda, if she did not behave according to the cancer models about being hopeful, and the biomedical models about being grateful and submissive,- her care providers actually withdrew information and care. She learned how to participate in the 122 Discourse in order to receive the care she needed, but she continued to rail against what she saw as the pervasive denial of the reality of both patients' pain and professionals' fundamental ignorance about cancer. In addition to Linda's refusal to align herself with the dominant discburses around cancer, she also rejected the expectations of the biomedical discourse with respect to the patient-practitioner relationship. Like Marcia, Linda objected to conventional medicine's norms about patient behaviour. But while Marcia felt confident about her knowledge base and her ability to make good decisions, Linda was searching for answers in a context where there was too much information and not enough clarity about how to judge its veracity. Linda saw the Biomedical Discourse as putting patients in an impossible situation. Doctors carry an aura of infallibility. They hold the body of necessary knowledge, but they do not share their knowledge completely or accurately. At the same time, they demand that the patient make the final choice about treatment because of their fear of legal liability. In the end, Linda did not make treatment decisions according to a coherent set of criteria for legitimacy. She made decisions out of exhaustion and in a spirit of rebellious pragmatism. As was the case with many of the patients I interviewed, faced with an uncertain future and contradictory discourses, Linda relied primarily on her own identity, her own values and pre-existing coping strategies to find meaning and coherence. The next patient also relied on his identity and familiar coping strategies when faced with uncertainty about what treatment to pursue. But for him, the questions provoked by the cancer experience were more political than personal. 123 The conversation with Jack: "Hands-on all the way" Jack is a 48 year old, single, firefighter. He volunteered to be interviewed after being told about my research by the oncologist he sees at the local cancer clinic. 1 interviewed him at the fire hall where he works. Jack is tall, with a sturdy build. He looks fit and healthy, although a little overweight. At the time of his cancer diagnosis, when he was 45, Jack was doing triathlons and lifting weights. He was found to have prostate cancer after requesting a PSA (prostate specific antigen) blood test as part of a routine check-up. He insisted that he get the test even though the digital rectal exam the doctor did was negative because he had been advised by a friend to demand the test. His PSA level was high so a biopsy was done after antibiotic treatments failed to reduce the PSA reading. The biopsy revealed that his prostate was "loaded" with cancer and showed some signs of invasion beyond the prostate. Jack's urologist recommended surgery and his oncologist recommended radiation. It was predicted that these conventional treatments would give him a 60% chance of survival but would likely result in impotence and incontinence. Jack was not willing to become "a eunuch wearing diapers." So he went to the Internet looking for a "plan B." Prior to his cancer diagnosis, Jack had very little experience with the health care system because he had always been so healthy. He found himself on a steep learning curve. He spent days on the Internet, on the phone, and at the library, educating himself about prostate cancer and all the available treatments, both conventional and alternative. Jack said he had been good in school sO he approached this as "just another scholastic endeavour." By chance he intercepted an e-mail from a man who was on his way to receive treatment at a private clinic in California. After learning more about this . 124 treatment Jack believed it would offer the same chance for survival as the treatments recommended by his local doctors but without the side-effects. Jack's plan B consisted of anti-testosterone hormone treatment prior to radiation using a new proton beam technology that is only available at this one clinic in California. This was followed by conventional photon radiation at the cancer clinic in Vancouver. Jack paid $50,000 out of his own pocket for the treatment he received from the private clinic.5 Jack himself ended up making decisions about how much of each type of radiation he should have and for how long. He chose to get a higher dosage than was typical because he believed he was younger and stronger and would be better able to tolerate radiation than most prostate cancer patients. Jack felt comfortable doing this because he felt he had educated himself to the extent that he was the one who had the most knowledge about his particular situation. I was hands-on all the way. I got kicked out of the doctors' offices and all the rest of the stuff because I said, "Well it's me and I'm handling the show." And even like the guy who handled me at the Cancer Clinic, I said, "You got a problem?" He's a nice guy. I said, "Do you have a problem with me saying, "Here's what we're doing." He said, "No, not at all. It's kind of nice." So he was fairly, kind of proactive, in that situation and that's great. So he didn't have to give me any of the lie lectures or anything because he knew that I knew what everything meant. And not, "Well you'll be fine." It was like, . "Well you know what you're going to be, so I won't go' there." So he was very good. Jack took this approach after receiving advice from other prostate cancer patients. There's so many guys that are so involved who are, well, quite angry with the whole way this is being treated and one guy said, "You have to become the best student of your problem because you can't trust anybody else to treat you." And I thought at first, "What's he talking about? I've got the best urologist in town." 5 The Fire Fighters' Benevolent Association later reimbursed Jack for the majority of the cost of his treatment. . '125 Well (later) I sent him a couple of e-mails and phoned him and said, "Were you ever right." I said, "If I left it in their lap and they made all the decisions I shudder to think where I'd be today." And so it's so true, if you're not a hands-on patient you're getting poorer . service from the physician. And this is not a vendetta against the physicians. I mean, we know how busy the medical system is and how antiquated their tools and equipment is. I mean the government won't pay for them to get any more education on top of what they've got. I mean, they are in a pretty ugly spot. So it's not against them, but it boils down to the fact that if you're a patient and you're getting'lousy treatment the only way to get around that is to become a bit of a physician yourself. If you're not hands-on, you don't get the best treatment. Jack also took cesium chloride, which is- supposed to affect the oxygen metabolism of cancer cells. He also went to a local clinic that provides complementary and alternative cancer therapies but he did not become a patient there. When I asked Jack how he determined what sources of information were reliable, he made a distinction between "chemical alternatives" and "hocus pocus," He judged chemical alternatives using several criteria: the evidence that was cited and the theory behind the treatment had to make sense to him; claims that the treatment cured everything or everybody were not credible; and price. He dismissed mind-body approaches such as meditation as being potentially helpful to one's mental state, but not effective against the disease itself. Despite having confidence in these guidelines, Jack knew his decisions were fraught with uncertainty. You've just got to take a lot of stuff with a grain of salt and you should. And you're shooting in the dark. You've got to look in the mirror and go, "Cross my fingers and hope I've picked the right one," or whatever, because you are shooting in the dark. No one knows. The experiences Jack had with the Canadian health care system made him angry. He compared the free screening mammography program that is available to women over 40 to the practice of men having to pay $25 for a PSA test unless their doctor finds 126 clinical signs to justify the test. He pointed out that two physicians failed to detect any problem with his prostate in their physical examinations and he showed no symptoms of cancer. He believed that these different policies regarding two cancers with similar prevalence and mortality rates are discriminatory and reflect men's failure to advocate for more effective screening. He stated that his physicians had told him, off the record, that the medical system could not support the load of diagnostic and treatment procedures that would be required if there were an effective early detection program for prostate cancer. Jack asserted that the U.S. system does a better job of testing for early disease because of the concerns in that jurisdiction about avoiding medical litigation. Given Jack's concerns about the number of men in their 40s and 50s whose prostate cancer might go undiagnosed until their disease is advanced, Jack began • educating other firefighters about the need for early PSA testing. He successfully lobbied the firefighters' benefit association to pay for the cost of PSA tests for their members. He said that he had saved more lives since getting prostate cancer than he had in his 25 years as a fireman. But for Jack, this was not enough. He asserted that the Canadian health care system is fundamentally flawed. From what I've seen, and this is just a straight layman, it is so screwed up. It's like a house where you've started with a foundation uneven and then they started to build up and then correct and correct. And you had five different engineers and now you've got just an absolutely huge monstrosity that's been there for so long and so many people have so much interest in it that they don't want to tear it down and yet you have to spend twice as much money just to keep it standing. And it's not working. Having seen what can be done in a system that includes private clinics, he questioned why Canadians are so committed to the principle of universality. 127 In a Utopia it would be nice if we had nirvana and everybody got the same as everybody, it'd be cool. I'm just curious as to why somebody threw a dart at the board and went—medical—that's where we're going to draw the line. I can't figure out why, somehow, somewhere, they drew the line there. I mean you wouldn't have as many sick people if they drew the line with, "We all get the same food, healthy and nutritious, and the same water and the same clothing and housing." Reflections Jack is different from the other patients whose situations have been profiled. He did not have any interest in any of the philosophical Or ideological aspects of complementary or alternative medicine, either before or after his cancer diagnosis. Jack's exploration of alternative cancer treatments arose from his unwillingness to lose his sexuality and his sense of physical mastery, two very important aspects of his identity. His decision making was heavily influenced by his participation in Internet-mediated networks of cancer patients. The treatments he chose were not based on conceptual models that were substantially different from conventional biomedical models. Rather, from Jack's perspective, these treatments were advances on what was available through the conventional Canadian medical system. They simply had not been around long enough to be legitimized by the usual means. Jack's experience of cancer did not seem to prompt him to question biomedical models but it did cause him to challenge the way the delivery of medical care is structured in Canada. He became convinced that, because the medical profession lacked up-to-date equipment and education, patients had to become hands-on decision makers. The dominant role he played in his care seemed to be rooted more in a pragmatic concern for his own welfare than in any allegiance to cultural models about patient choice or the moral rightness of more egalitarian doctor-patient relationships. 128 In Jack's criticism of the Canadian public health care system, he drew on cultural models that are becoming increasingly prevalent in the debate about the future of the health care system: the system is inefficient, fundamentally flawed, distorted by special interests; and people should be allowed to pay for private insurance and private care if they can afford it. He challenged the legitimacy of the Canadian master model around the sanctity of universal health care by pointing out its apparent arbitrariness. While Jack's experience of cancer did not seem to destabilize his identity or the ways in which he found coherence in his life, it did prompt him to conclude that the Discourse of Canadian health care lacked coherence. The resulting anger prompted him to become what could be called a prostate cancer activist. He began advocating for the reallocation of societal resources and the realignment of political choices. Jack's situation demonstrates that people who are making decisions about cancer treatment are not only subject to the Discourses of Biomedicine and CAM. They are caught up in larger public discourses as well. The profiles presented in this chapter show that patients strive to find coherence and meaning in the face of the challenge of cancer; this is not surprising. What is noteworthy is that the coherence they "jerry-rig" is not necessarily all that coherent. The examples in this chapter show that situated meanings can be unstable, contradictory, and linked to competing cultural models and Discourses. They are truly situated, i.e., dependent on circumstances and contexts that are uncertain and changeable. The next chapter presents the perspectives of conventional practitioners. Their experiences demonstrate that being firmly entrenched within the Biomedical Discourse brings other kinds of uncertainties. 129 C h a p t e r F i v e Biomedical Perspectives on CAM's Legitimacy Introduction In this chapter I discuss conventional medical practitioners', perspectives on cancer patients' use of Complementary and Alternative Medicine (CAM). The material in this chapter is based on individual interviews I conducted with professional staff from the British Columbia Cancer Agency, (BCCA). When I did these interviews I was impressed by the substantial nature of this embodiment of the Biomedical Discourse. If war is being waged on cancer, places like the Vancouver Cancer Centre are the fortresses, the command centres in that war. The entrenched legitimacy of this institution is unmistakable. All the signs and symbols of sociocultural medical power are here: the expensive technological equipment; the doctors in their white lab coats; the nurses in their sensible shoes; the technicians with their clip boards and files; and the support staff bustling about looking harried. One thing that is striking about this setting is the amount of financial and human resources that are invested in it. While this chapter focuses on the language and ideas expressed by people who work within this environment, it is important to remember that these textual elements are embedded in a Discourse that has a 130 complex material, social, and political infrastructure that has enormous weight and stability. I interviewed six oncologists (three medical oncologists and three radiation oncologists) and three nurses. Most of the oncologists had more than ten years experience in cancer treatment and research. The nurses had varying lengths of service in specialized cancer care. These practitioners responded to invitations to take part in the research that were sent to BCCA professional staff. The practitioners selected themselves for inclusion based on their interest in the topic and their belief that they had something to contribute to the research. Among the conventional practitioners I interviewed there was a remarkable homogeneity in practitioners' views about the issues they face as CAM and Biomedicine converge. As noted in chapter 3, the practitioners who volunteered to be interviewed did not express extreme, oppositional views about CAM. In fact, a small number likely view themselves as having their feet planted in both worlds. The material in this chapter is organized according to three topics that were covered in the interviews that are most relevant to the dissertation: the use of CAM by cancer patients; patient-practitioner relationships; and science as a source of legitimacy. The focus in this chapter is primarily on the political and epistemological aspects of the issues that are arising with the convergence of CAM and Biomedicine, since these are what have become most unsettled for biomedical practitioners. The,previous chapter focused on individuals with cancer. It presented cancer patients' personal stories and perspectives. This chapter focuses less on the personal and more on respondents' roles and the implications of their position as insiders within the Biomedical Discourse. The quotes in this chapter come primarily from interviews with 131 four oncologists. The quotes have been selected for their cogency and salience: While the the nurses I interviewed are not often quoted directly in these pages, nurses' experiences and perspectives provided important richness to my understanding of the biomedical context. The people whose thoughts and opinions are presented in this chapter are not living with cancer in the way patients are. Professionals in the oncology field live in a different relationship to cancer. Within the dominant cultural model that portrays an encounter with cancer as a battle, they are "the troops."1 They make their living in opposition to a disease with which they become intimately familiar. It is also their mandate to care for people who are ill with cancer. It is often difficult to combine these two activities: fighting the disease and caring for the person who is ill. But, in contrast to the patients profiled in the previous chapter, the practitioners whose views are presented in this chapter are not struggling to create meaning or- coherence by drawing on a variety of cultural models and conflicting Discourses. Their professional identities and allegiances are clear. They are living within the Biomedical Discourse, a Discourse that enjoys a hegemonic sociocultural position. The primary question related to CAM for these practitioners centres on how their work is affected by the CAM Discourse. As CAM and Biomedicine converge, conventional oncology practitioners are in a difficult predicament: they are already experiencing stress and overwork because of the demands of providing cancer care in a health care system that is hampered by financial cutbacks and staff shortages; they are meeting patients who expect them to be knowledgeable about a multitude of different CAM therapies and their potential ' During the time I worked at the BCCA I often heard staff refer to professionals who worked in the oncology field as "the troops." 132 interactions with conventional treatments but they have little time to spend educating themselves and few sources of knowledge they consider credible; they are interacting with patients who expect them to adopt new models of patient-professional relationships; their professional motivation and commitments are questioned by critics of "the cancer establishment;" and while they are aligned with biomedicine and appreciative of its accomplishments, they are all too aware of its limitations, as only insiders can be. Cancer Patients' Use of Complementary and Alternative Medicine The practitioners I interviewed noted that there has always been a segment of the cancer patient population that has used unconventional treatments. Nevertheless, practitioners reported that there has been a shift in the pattern of C A M use in the last ten or fifteen years: a higher proportion of patients are using C A M and those patients are using an increased number of different substances or approaches concomitantly, e.g., rather than taking one or two alternative anti-cancer treatments, many patients now use a comprehensive regimen of C A M that combines such approaches as meditation, psychosocial support, nutritional supplements, and dietary changes as well as specific alternative anti-cancer treatments. One oncologist, named Charles, described the situation this way: I ' l l tell you a little story about how my eyes were opened to how much this is happening. For me, the gold standard of the person who's really got their feet on the ground, as sensible, is the (prairie) farmer. . . . A n d when my retired farmers, when they were all coming in with alternative therapies, I thought, "Hey this is main street!" (laughs) The Asian population I can understand, my Aboriginal population, sure, that's their culture. But my goodness, this has really hit the mainstream, (laughs) 2 The names given to the practitioners who are quoted are pseudonyms. 133 Another oncologist estimated that, 15 years ago, probably 70% of her patients were using CAM therapies while about 85% are using CAM now. This oncologist did not see this increase as particularly significant. What was significant in her opinion was the increased openness about CAM (i.e., both patients and practitioners are more willing to talk about it) and the widespread availability of different therapies and products. Most practitioners mentioned the Internet as a factor in the increased public awareness of complementary and alternative treatments. Some practitioners commented that it was not uncommon now for patients to come to their clinic appointments with stacks of print-outs from websites that they wanted help-deciphering or used as reference material in their demands for better information or different treatments. The conventional practitioners-also mentioned the increased number of CAM practitioners such as naturopaths that were promoting particular approaches as well as the increased availability of products such as herbal remedies and nutritional supplements in mainstream retail outlets. For example, one oncologist named Patricia described the change as follows: There was always a significant minority using alternative therapies and now I think it's a significant majority. So it's grown and it's partly grown, I think, because of access to information but you can also see it's grown because of availability. There's a naturopathic store on every corner, you know, and there clearly is an appetite for it or all the stores wouldn't be functioning and making an income from their products. I think the easy availability of knowledge through the media and through the Internet has facilitated that. I think people's ability to travel, their high level of education, wish for some autonomy or less dependence on perhaps traditional medical advice, more wish to try and look after themselves—which is all very good, you know— those are all healthy things. That has led to a steady growth. Conventional practitioners believe that not only has the level of use of CAM by patients increased but the sociocultural presence of the CAM Discourse has grown: it has 134 become mainstream. As the preceding interview excerpt shows, conventional practitioners see the use of C A M as being linked to other cultural shifts, including changing values related to patients taking more responsibility for their health and exercising more autonomy in relation to biomedicine. These are the kinds of cultural models that C A M proponents are promoting, as chapter 7 will illustrate. In their comments about the changing role of C A M in cancer, two oncologists offered other observations about larger cultural forces. Patricia spoke about the tendency for patients to not only want complementary and alternative treatments, but to demand the best of conventional medicine as well. I also see the other side of the coin and that is patients generally are desperate for the cutting edge of medical care. They want anything that can be done, done. And most people are clamouring for conventional therapy and often very confused about what they read on the Internet about some research taking place somewhere which they think is an established treatment and why can't they have it tomorrow. There are very few people at that fringe end who repudiate conventional . . treatment and only go for the alternative. There are a few. I saw one last week, it was absolutely shocking. This young woman has thrown away her life. Because she wouldn't accept treatment for a cancer that's now going to kill her. And that's rare. The vast majority want the best of everything. The best. They're clamouring for the best of conventional treatment and in the area that I'm in, it happens to be cancer drugs and I just get bombarded by phone calls from patients, trying to access drugs that are not approved in Canada or the United States. They are only in research or being tested on mice and people don't understand that they can't get it, you know. And patients think they're being denied something. The thing that does drive me completely crazy, it really does, is there's this pervasive sense in the public and patients that they're being denied all kinds of things because it's too expensive and the Canadian health care system won't pay for it. And in fact there's hardly anything they're being denied. At all. Nothing I can think of. That's not the issue. It's just that these drugs are still in early research . and either haven't been tested on humans or proven to be any use yet and they've read about something in the newspaper or on the Internet and they're very upset they can't get it. And I spend a lot of time explaining to people, "You have no idea this stuff is any use and it will probably be several years before we do." And you know, they want it now. And so, again, it takes a lot 135 of time and people are very hurt, angry and upset because they think that somehow the health care system is letting them down. But in fact we don't have miracles for many cancers and I remember one health care person in the States that I went to,a lecture in Harvard, saying, you know, "One of the issues with the North American society, there's a section who truly believe death is optional." They can't believe there isn't a solution and .sometimes there aren't. Patricia was not the only oncologist who linked CAM use with society's denial of death. A second oncologist, named Joan, also made this connection. The following remarks were prefaced by Joan's observation that a lot of what was happening in medicine is related to the widespread materialism in our society and people's unrealistic expectations of life. (What) I see complementary medicine mainly as, is a reflection of these woes of our society and of people's lack of centeredness ... I think a huge amount of it is the people's fear—death is not supposed to happen, disease is not supposed to happen. I've got to control it. This focus on control and the triumph over death can be seen in some of the CAM Discourse (e.g., see the excerpt from Deepak Chopra's book given in chapter 6) but a denial of death has also been described as an unhealthy aspect of the Biomedical Discourse (Weil 1995; Gordon 1997; Robbins 1998). It is interesting that the oncologists did not connect this cultural attitude with biomedicine, but saw it as something "out there" in society. This may be an example of a cultural model (i.e., a belief that death represents a failure of control, or that death is a mistake) that is reinforced by several Discourses in a positive form (e.g.; discourses around the quest for perfect health or the perfect body) but that no Discourse wants to overtly claim in its negative form. When I asked the biomedical practitioners what issues the use of CAM raised for them, the oncologists spoke about the dilemma they face with respect to advising patients 136 about what treatments can be taken in combination with conventional treatments. Patricia's response was typical. People have a high expectation of physicians having knowledge of a variety of interventions and high expectations of having time to talk, especially when they are dealing with a serious illness like cancer. So the biggest challenge for me is answering people's questions in an even-handed, non-judgmental way that supports them in some of their very reasonable decisions, then also balances the advice I must give them about any medical risks of anything they choose to do, seasoned with a dash of concern if I have people heading off to take treatments that I know are very expensive and offered by charlatans. Those are the bad end of the spectrum. Most complementary interventions I think are healthy and helpful in that I think they support the patient's need for doing something to help themselves, it gives them a sense of purpose, a sense of control and all the things we are very familiar with. So I think the knottiest problem for me is when the patients come in on - about ten or fifteen things they are taking by mouth—so this isn't the massage therapy or the psycho-social support end of it which I think . . . are terrific. . . . But when people are taking a bunch of stuff, the difficulty is that a lot of these different herbs and chemicals do contain some active ingredients but you often don't know what. So it does leave me in a dilemma. Because generally adverse reactions almost never happen, but a few do. And they may not be the adverse reactions when patients get sick. There are some natural foods that can inhibit the metabolism of certain drugs or accelerate the metabolism of certain drugs, such as chemotherapy drugs. And nobody actually knows if it makes a difference because there's not a lot of information. You know, you're not having droves of people signing up for studies to try and evaluate the interactions between various compounds or even to evaluate efficacy. So the difficulty for me is what, to say to the patient when they come in and show me this endless list of things they're taking and ask me, "Is it alright?" Because on the one hand I tend to say, "Sure it's alright, many of my patients take these, no problem." But on the other hand I sometimes wonder because I actually don't know what's in these things and each one of them has a long list of sub-ingredients. ... I sometimes will ask the pharmacist to scrutinize everything and give some advice, and they do frequently then advise the patient not to take some of these things during the course of the chemotherapy and other things they say, "That's fine." So I think that's my biggest concern. I don't want to do any harm to the patient by giving them something that may cause an adverse reaction with some of the other things they are on, but in my twenty-something years of practicing oncology I can probably only think of two occasions when that's happened. So it's very, very infrequent. So I'm not particularly neurotic about it. But I am concerned that I am not giving the patient the right advice. And 137 yet at the same time I want to support the patient in feeling that they don't have to be defensive or feel criticized if I say, "You know, I'm not sure this is something I'm happy with you taking," because then it tends to generate a sort of "us and them" sort of sense. They're torn between wanting to trust their conventional physicians . . . but also wanting to believe whatever they've been advised by, perhaps a naturopath or even health food store. ... I strongly encourage people to do certain things that I think are very meritorious, you know, support groups, psychological counselling—very helpful. I recommend it for a number of people, a number of soothing interventions whether it's crystal therapy or any of these. Whatever it does, it can't do any harm, (laughs) As long as whatever information you are being provided with is not erroneous. I think where practitioners like me actually get positively upset is .when patients are given profoundly erroneous advice—guarantee of life-saving treatment or whatever—nearly always linked to a high price tag. Or being force-fed the concept that there's a conspiracy amongst the general conventional doctors to deny you curative treatment. Patricia makes a distinction between psychosocial interventions that provide benefit or at least do no harm and expensive treatments offered by "charlatans" who offer unrealistic guarantees. The ethical issues related to this aspect of CAM use are of great concern to conventional practitioners, as the next section demonstrates. Patient-Practitioner Relationships Many health discourses advocate for a new kind of relationship between health cafe professionals and patients. The patients' comments in the previous chapter provide some examples of the kinds of relationships patients are coming to expect. The model that is being promoted is one where patients and practitioners engage in a healing partnership where the knowledge, needs, and interests of patients are given more weight than they traditionally have held in conventional medical settings. Although "patient-centred care" has been a buzzword in the Biomedical Discourse for several years, the reality is that 138 many health care providers have not changed their way of relating to patients! One nurse I interviewed gave the following perspective on the situation. You know, we always talk about here, that we should have person-centred care. We do talk about that a lot (here). But I think we're not walking our talk, at all. I think we're so enmeshed in a system that's constrained by funds, by worldviews, by history and myths—you know myth is involved in there too—"Because we've always done it that way." People aren't willing to step outside the box and look at this thing differently. However, Charles reported that the dynamics of patient-practitioner relationships are changing. More and more, and quite appropriately ... it's a much more collaborative decision-making process than it used to be, for sure. And so I will see a patient and I will recommend, "These are your options, you know, this is the best chemotherapy for you. On the other hand you may, if you don't want chemotherapy, you could do this or you could do that." So you always try and give people options so they can make a final decision with as much information as they can. And that's what a lot of people want. Now there are some of the older people they're not used to that model, so they'll just say, "Oh doctor, please tell me what I should do." Alright. But this is really changing and it's a very different market place out . there. While some ofthe practitioners agreed that patients should have more control in the process of making decisions around treatment, Bernard, an oncologist, pointed out a major difficulty posed by this more egalitarian model. You never impose a treatment on a patient. You can't do that. You can say, "Look I really think this is going to save your life and it's effective and if you don't have it you may die in a few days." But if that patient says, "Thanks very much but no thanks," then that's it. Our only commitment there is to say, "Can't I go over this again." . . . And there are people with very different beliefs to me and if that's their belief, that's their choice. We can't chain them down and do that. So they have always had choices to that degree. But if they want real choice they've got to go through medical school and do that, because reading the books tends to generate confusion and more questions. For biomedical practitioners, questions about how to structure patient-practitioner relationships and how to manage the process of making treatment decisions are strongly 139 linked to ethical considerations regarding informed consent. These ethical considerations are connected to the role of CAM practitioners in patient care and to the concerns raised by patients about conventional medicine "robbing hope" in the process of giving a diagnosis and prognosis. Joan said that the situation is affected by our sociocultural tendency to want facts and figures. She illustrated her point by talking about all the media stories that report statistics and surveys. She argued that patients are making paradoxical demands on physicians as a result of this discourse around quantitative facts. People want these (facts and figures) but they don't really want it in medicine. But they do want it in medicine. They want the doctor to say, "I have a 72% chance of curing you with this treatment." So they ask for that average ... but they don't want to hear, it. They ask for that. Medicine has responded. Medicine has also responded to this ethical thing. Medicine has dealt with the legal issues and the liability issues by increasing the ethical denominator and by increasing how we define our ethics. I don't think that's bad. I think we have to be ethical, but in defining ethics, you know, one of the major things is veracity. With veracity you tend to be sometimes more blunt and less benevolent than you are without L veracity. Whereas the old doctor used to say paternalistically, "Leave it to me. I'll look after you, my dear." . . . What the patients are demanding is saying, "I want the facts. I saw on the Internet this, this, this. Tell me the facts." So a patient comes in and says, "I read about my breast cancer—stage II breast cancer—I read that I have a 60% chance of being cured at ten years or a 40% chance of dying." What do you say? You either say, "You're reading the wrong things," or you say "You're reading the right things." But if you say, "You're reading the wrong things," you have to give a new figure. So patients come in demanding veracity, as much as you can give, and demanding figures, but they don't really want to hear it. What they want to . hear is the paternalistic, "I can cure you." So medicine has been pushed by society and by its reluctance, I think, to really look broadly at being more holistic. They've been pushed to this ethical defensible corner of providing facts and yet what the patient wants is hope. Hope and reassurance and paternalistic autocrat. The patient wants the doctor to be the autocrat. The patient wants you, in a sense, to say, "I can do this, I can heal you." And that's what they're getting from the alternative view. There's a few issues around that. . . . One of the issues is that if you give less than facts then patients often feel like they are getting a less good deal 140 and they want facts, they want books, they want articles, they want reading material. They want you to talk to not just them, but their partner and their ex-partner and their next partner and their daughter and their son and they want everybody involved. Everybody who becomes involved comes with their own set of facts and expectations, and their own opinions. So therefore it becomes' even more prudent for the oncologist or the physician to give as hard facts as they can. And yet. at the end of the day all the person wants is 100 or zero. Is this disease going to come back or not? So everybody wants hard facts, but they really don't. They want this hundred or zero. There's an issue too about how we give facts, and how people hear facts and when facts are given, because I think that facts can be given to people in a way that is a cup half-full rather than a cup half-empty. Facts can be given people at the right timing. Some people want to hear all the facts at the beginning, some people don't. And very rarely do patients come alone any more, which is good, it's good to have another set of ears. Having said that, it's good if they come with another set of ears and not with their own agenda. But their own agenda being there often changes the normal rhythms of the patient. So what does the patient do? The patient gets freaked by what they think they want or what their support people want. And what do they want? They want to know hope, they want to know cure, they want to know they're fine. And they then go to an alternative healing (approach) which has not backed itself into this ethical corner, which has no responsibility to give facts, which has no liability about facts, which has no facts, is the reality. And they get a lack of facts, they get hope, they get reassurance. Patricia also spoke *about the different ethical standards that biomedical and CAM practitioners must uphold and the way that these differences affect patients. I think in some ways what naturopathic medicine can do and other complementary methods, is it gives the patient a major comfort factor and sometimes the promise that if they, do certain things, something good will happen. They will feel better or stronger or be. helping to fight things off. And I think my job's harder. It's much easier to peddle, hope than to deal in reality. . . If I'm trying to get a patient to choose between two or three quite tough options, they need to know what the risk of severe or life-threatening side effects are. I can't just say, "Oh take this stuff. It's great for you. It'll do the trick. Yeah, chances are you'll be fine, don't worry about anything else." Because that would be malpractice. I have to spell out the choices, have to empower the patient to decide, and I can't overstate the benefits. So I'm bound by my professional, not only professional standards that I have personally, but professional standards supplied by the College of Physicians. That licence you to practice that you have to be forthright and honest in disclosing to the patient all of the circumstances. Sometimes you have to disclose so much it's overwhelming. 141 I've heard the expression ("robbing hope") and we in conventional medicine shouldn't be robbing people of hope in that you shouldn't say, "Oh darn, you've got really bad cancer, you'll be dead in six months and there's not much I can do about it." I mean that would be robbing somebody of hope. That would be appallingly bad style to communicate with a patient. However if I have a woman for example, who's brand new, who's come to me with something terribly bad, she's got a liver full of cancer and I have a treatment that will maybe prolong her life by three months if she's in the one in three who respond. And if she's in the two out of three who won't respond, all it will do is perhaps make her sick and make her hair fall out. So it's very important she understand the limited merit of that treatment and feels able to make the decision. I mean if she says, "I'm not feeling too bad right now and my son's graduation or wedding or something is in four weeks and I'd rather not be sick, I want to enjoy that, and I don't think I want your treatment or I'd like to put it off for a bit," I'd like her to feel she has the choice. Not, "You've got to take the treatment now, you're going to get much worse, you have to get on to it quick, like next week." So it's very difficult to fulfill your obligations to provide reasonable disclosure in a way that's understandable for that patient's level of emotional stress that day, the language, education. And it's more than one visit, it's an iterative cycle of trying to explain things to people and nurture them along to what they think's the right decision. So you are constrained. You can't just peddle hope, you have to deal in facts. But you can present it in a supportive way and when you get to that final discussion where you're saying, "I don't have any further active treatment to control your cancer," then it should be done in a way that ensures the patient feels that you're putting in place the supports they need. Putting in place the family doctor's support, the homecare nursing support, you're giving them an opportunity to ask about death and dying, what it's like. You're giving them an opportunity to be reassured that their pain can be controlled. All of the things that are terrifying for human beings you want to be able to assure them that you're doing something to help, that's not the same as, "Take your vitamins and all will be well." You know, it's a different role that we're fulfilling. And I think that for patients it's often hard to understand that. Some of the practitioners told stories of patients who had been led to believe that their complementary or alternative treatments would cure their cancer and, in their final months, became angry that they had been misled. Joan related a conversation she had while providing palliative care to a patient who had been told by a complementary physician and a naturopath that her breast cancer could be cured. 142 "How dare they treat me that way," the patient said. "When I met you (Joan)," she said, "I hated you 'cause you told me you couldn't cure me. And I turned around and I went to see them and they both told me they could cure me and they could make me fine." She said, "So who do you think I would have believed? But why didn't they tell me the truth?" Patricia described similar situations and emphasized the difficulty physicians have . responding to patients' questions about their prognosis. I've occasionally had patients come and say to me that they were very angry with some other doctor whom they've usually just fired because they didn't forewarn them that their life was going to be short. And these patients felt robbed of an opportunity to use those last few months constructively. And . . they were usually at this point dying and they said, "You know, if I'd known it was this serious, I would have done this, I would have done that, I would have spent time." Usually with family and friends doing certain special things, or sometimes it.was sell their house or stop fussing about money, whatever—things that were important for that person at the end of their lives. And the difficult thing is that, as the doctor, you don't know what space that patient's in when you first meet them and you're trying to judge it. You don't know what their pressing needs are. ... It's up to the discretion of the individual physician (whether to give a time frame) and you've got to be terribly careful about time frames because you often (pause) get (pause) it (pause) wrong (pause). And it's quite acceptable to give a range but even that can be misunderstood by the patients. Because if a patient asks you, you know, you don't usually ram it down their throats, you don't usually say, "Well by the look of you you're going to be dead in six months." But you introduce the idea that perhaps you're not going to cure them and you introduce the fact that you may have run out of options for active treatment, but you still have lots to do for symptom control. And you give them an opportunity to express whether they're interested in knowing more, but if so, you should respond honestly but not dogmatically. You don't know. Somebody you think is going to last three months might be dead next week and somebody that you think is going to be six weeks at the most is still chugging along nine months later, so that people and their diseases are unpredictable. So I generally say, "Well it looks to me as if you're probably into the last few months of your life and I'm not sure that you're likely to make it through another year." And in reality it's often a lot shorter than that but you can't be too precise because if you are, again, patients feel angry. . . . People are so uptight when they ask that question they don't (pause), they're not taking it in. These interview excerpts demonstrate crucial differences in the roles that conventional practitioners play compared to CAM practitioners. Being within the Biomedical Discourse with its professional ethical standards and vulnerability to legal action means being constrained in your relationships with patients. This is one of the prices of legitimacy. Being part of the legitimate professional community bestows the privilege to practice within a government-regulated system that grants certain benefits and freedoms. But it also imposes limits that do not affect practitioners who are outside this legitimized circle. The conventional practitioners saw their role as being much more difficult than that of CAM practitioners. One nurse speculated that part of the reason why patients view conventional practitioners as being less humane and supportive than CAM practitioners is that it is conventional practitioners who give the cancer diagnosis. Since they convey the bad news they become associated with that traumatic experience. The biomedical practitioners I interviewed generally agreed with some aspects of the cultural models about patient-practitioner relationships that seem to be gaining ground in both CAM and Biomedical discourses. There was a consensus that patients need complete and accurate information about their disease and their treatment options. There was agreement that patients ultimately have the right and the responsibility to make treatment decisions and that patients' thinking and decision making must be respected. But there was also a strong awareness that the situation is not as straightforward as it might appear to patients or others outside Biomedicine. Professional regulations and policies determine what information can be given and limit the ways in which it can be given. Patients "want the facts but don't want the truth." Practitioners 144 may not know a patient well enough to be sensitive to what he or she needs at a particular time. The growing tendency for patients to come to appointments with one or more support persons introduces additional needs and agendas into the situation. Patients do not have the depth of technical knowledge and experience that highly-trained professionals do. And, perhaps most troubling of all, even for those with professional expertise, it is very difficult to predict the course of cancer in an individual case, I sensed a certain amount of frustration on the part of conventional practitioners that they were being seen as failing to provide hope and reassurance. They felt it was unfair that they were being judged in comparison to CAM practitioners who do not labour under the same professional and legal constraints. I also sensed some frustration related to the fact that it is usually the conventional system that cares for patients in the final stages of their lives. There seemed to be an underlying resentment that CAM practitioners had the freedom to promise benefits without being held accountable, either legally or practically, for these promises regarding treatment outcomes. Another aspect of the patient-practitioner relationship needs to be mentioned and -that is the question of whether "caring" has been lost from biomedical health care. Some of the patients quoted in the preceding chapters expressed dissatisfaction with this aspect of their interactions within conventional health care settings. Some public discourses, including some parts of the CAM Discourse, present a stereotype of biomedical practitioners as unfeeling technicians who fail to engage with their patients as people. But, the practitioners I interviewed did not fit this stereotype. Sometimes during our conversations I thought I detected hints of the apparent callousness that people inside difficult situations adopt as self-protection. But, for the most part, the practitioners I 145 interviewed seemed deeply concerned about their patients' well-being. It may be that this is one way that this self-selected group is biased. One of the nurses I interviewed noted that some doctors are better than others at conveying the diagnosis and prognosis. But it seemed the oncologists and nurses I met were committed to providing care that was not only technically of high quality but also sensitive and respectful. During one interview I was particularly struck by a moment that clearly revealed the human engagement that professionals feel. The oncologist, Bernard, and I had been talking about the idea that people cause their cancers and can therefore heal themselves. He expressed adamant opposition to this tendency to blame the patient. I think if you see the number of patients that have cancer and the number of patients that we can't fix, even the patients we fix, the stuff they go through to get fixed, and on no evidence whatsoever that I can see, you put out that it's their fault, I think that is sinful. I then asked him if he saw patients in treatment that were approaching cancer as a wake-up call that prompts transformative changes in their lives. He said that he had heard of that, but that because of the specialized role he had with patients he didn't really get to know a lot of them well enough to be aware of those kinds of dynamics. He explained the specialization of the treatment system and the large caseload each specialist carries. I see them, I'm looking—is the cancer back—no. If it is back, what symptoms do you have, how can I help that best, do you need radiotherapy, do you need chemotherapy or do you need your doctor to look after that with painkillers. Do you need someone to get you a walking stick, and a chair, which is other stuff that other people have to do. Because I've got another five hundred patients that heed just this particular thing (that I do). So we're blinkered, and I think that's an unfortunate area of it. I think it's unfortunate for the patient, that some of the treatment is split up like that. I think it's led to a level of expertise in some of the technical steps that are then done extremely well and overall give beneficial effects for the patient, though it is a bit bouncing back and forth to different people, and it would be nice to have a balance between that, so that with expertise, you had some sort of integration. 1 4 6 After saying this, he shifted in his chair and paused slightly before saying that he was sure this specialized separation of roles was a defence for some of his colleagues, a way to "fix the fixable" and allow them to limit their engagement with patients. Then he paused almost imperceptibly again and his voice lost the confident authority it had carried up until that moment, and he said, "To be with them until death through all of the bits is hard. It's really hard." In that brief moment I felt the shield provided by the Discourse of biomedicine—-the white lab coat, the expert opinion, the scientific objectivity—drop away. Then Bernard looked at me and said, "So I've lost what the question was. Sorry." Science as a Source of Legitimacy Chapter 1 showed how some biomedically-oriented authors look to science to definitively answer questions about the legitimacy of complementary and alternative approaches to healing. It was during my conversations with biomedical professionals about this topic that discrepancies between the public and private biomedical discourses became strikingly obvious. The conventional practitioners I interviewed were acutely aware of the limitations of science and were forthright in pointing these out. For example, Patricia had this to say. Well, science is not absolute, science is an art too. It's just like they say,1 "There's lies, damn lies and then there's statistics." You can also say, "There's little lies, big lies and then there's how you interpret the science." (laughs) Because science is not like it's a black and white thing. And I think that's the difficulty. I think the profound difficulty for members of the public and patients is how to sort the information. . . . Science is only relative and it gives you a relative body of information from which to make reasoned judgments. So the patient's trying to make reasoned judgments and the 147 1 doctor's trying to make reasoned judgments, but we're playing from different decks of cards. And I swear some of my patients know far more about alternative and complementary medicine than I do. They've probably read a great deal more. Whereas I know a great deal more about the reality of their disease—how it's going to behave, in the most part—and because patients and diseases vary too. And how it's likely to respond to treatment and what the likelihood of failure or success is. But they're likelihoods, they're not absolutes. So science is never clear-cut in the health care situation unless you've got something as simple as, "Does aspirin relieve pain?" "Sure." &q