Barbara Clow is Executive Director of the Atlantic Centre of Excellence for Women’s Health (ACEWH) and Associate Professor Research in the Faculty of Health Professions at Dalhousie University.

Negotiating Disease
Barbara Clow

Table of Contents and Introduction

Introduction



Aknowledgments

Introduction: Framing a Response to Disease

1 Health Begins at Home: Lay Perceptions of Illness, Disease, and Doctors
2 The Problem of Cancer: Doctors, Scientists, and the Dread Disease
3 The Contours of Legitimate Medicine: Doctors, Alternative Practitioners, and Cancer
4 Cancer Patients Take Care: Sufferers, Healers, and Illness Experiences
5 Negotiating a Response to Disease: Politics and Cancer

Conclusion: Authority, Legitimacy, and the Problem of Cancer

Notes
Bibliography
Index




Introduction: Framing a Response to Disease

Cancer, in all its various manifestations, has been among the most lethal and feared diseases of the twentieth century. Indeed, in any respects it is a quintessentially ?modern? affliction: although previous generations endured the ravages of cancer, they more often succumbed to contagious than to neoplastic diseases. After the turn of the century, however, improvements in sanitation, public health, and medical care vanquished any infectious agents, leaving the population open to the depredations of chronic disease. Since the 1920s, cancer has consistently claimed more lives in North America each year than any other illness except heart disease. Moreover, few maladies in the modern era seem as dreadful as neoplastic disease: it not only kills its victims with distressing frequency, but also inflicts enormous suffering in the process. The spectre of cancer consequently looms large in the popular imagination as well as on professional and political agendas.

Given the prominence and persistence of cancer in the twentieth century, we might well expect to find a multitude of books devoted to the history of the disease. In 1937, Hayes Martin, a noted American cancer specialist, anticipated that scholars would take a lively interest in the subject. Some future medical historian,? he wrote, ?will, in all probability, refer to the present era as being marked by a rapid growth in the general interest in cancer, by both the medical profession and the laity.? While historians have studied various aspects of neoplastic diseases in the past, their number remains small, as does the corpus of work on the history of cancer. Ironically, infectious diseases in the modern era ? from tuberculosis to aids ? have received far more attention from historians than either heart disease or cancer, the major killers in North America. As a result, our understanding of the history of cancer, one of the most dreaded afflictions of our time, is frustratingly meagre.

One of the simplest purposes of this book is to extend our knowledge and deepen our appreciation of the complex history of cancer by exploring popular, professional, and political reactions to the disease in Ontario during the first half of the twentieth century. Drawing on Arthur Kleinman?s model of ?health culture,? which asserts that ?in all societies health care activities are more or less interrelated,? this study examines not only the diversity of perspectives in Ontario, but also the dynamic among them. The book opens with a discussion of popular and professional attitudes, and their impact on the management of neoplastic diseases. As we might expect, doctors and patients often espoused incompatible interpretations of health, illness, and healing, thereby complicating the medical encounter. But medical and lay opinion also showed surprising affinities: shared perceptions of cancer, in particular, had profound implications for the diagnosis and treatment of the disease. In the middle section of the book, we turn from a comparison of perspectives to confrontations between perspectives. Chapter 3 describes the encounter between regular and alternative practitioners in Ontario while chapter 4 explores specific sufferers? experiences with conventional and unconventional medicine. Although regular and alternative medicine appeared to embody disparate approaches to illness and healing, these chapters reveal the confluence as well as the clash of these two views. Chapter 5 examines the state?s role in the provision of cancer care, particularly the Ontario government?s efforts to create policies and programs acceptable to the laity, to alternative healers, and to the medical profession. This chapter deals most explicitly with the holism of health culture described by Kleinman, tracing the complex interactions between popular, professional, and political perspectives that ultimately defined the collective response to the problem of cancer.

While the following chapters reveal a good deal about neoplastic diseases in the first half of the last century, this study is more than just another history of cancer: it is also a book about power. Much has been written in recent decades about the nature and exercise of power in the real of health and healing, particularly the authority wielded by medical practitioners. Some scholars have lamented the decline of professional influence since the end of the Second World War, claiming that dwindling patient confidence in doctors has seriously compromised the efficacy of conventional care. Others have criticized the persistence of medical authority, arguing that too often patients? rights are trammelled and their welfare sacrificed during encounters with physicians. Although these interpretations have enriched our understanding of the doctor-patient relationship past and present, neither view alone does justice to the complexity of medical authority. As Deborah Lupton has pointed out, ?power in the medical encounter may be both productive and oppressive.? Moreover, these accounts have tended to reinforce the view that doctors have dominated health care in the twentieth century; whether the exercise of power is considered salutary or pernicious, it is generally regarded as the prerogative of the medical profession. In his seminal study, The Social Transformation of American Medicine, Paul Starr eloquently elaborates the growing influence of conventional practitioners in the United States. In contrast to some scholars, Starr carefully distinguishes between the different kinds of authority available to and attained by doctors in the twentieth century. Although regular practitioners acquired considerable ?cultural? authority, the power to define health, illness, and healing, they frequently lacked ?social? authority, the ability to compel patients or the public to accept their advice. Nonetheless, Starr concludes that the growing cultural authority enjoyed by the medical profession sufficed to consolidate its position by the 1930s. ?Lay deference [to] and institutionalized forms of dependence? on medical opinion, he claims, provided the basis for ?high incomes and status.?

Private and professional discourse about cancer confirms that doctors enjoyed enormous cultural authority in early twentieth-century North American society. Sufferers regularly turned to physicians and surgeons for the diagnosis and treatment of neoplastic diseases while the public expected conventional researchers to devise solutions for the problem of cancer. The state similarly relied on medical experts to formulate and implement policies for the control of neoplastic diseases. Even alternative healers sometimes modelled their therapies on the latest conventional theories of cancer causation or hoped the medical authorities would sanction their work. But the history of cancer in Ontario reveals that the power of the profession, cultural as well as social, was by no means uncontested in the first half of the twentieth century. Popular definitions of health and illness, which frequently diverged from those of doctors, determined when and if sufferers would seek medical attention. Lay experience with conventional cancer therapies likewise shaped the health care choices of patients: information gleaned from family, friends, neighbours, and even the media could outweigh the advice offered by physicians and surgeons. Personal and social experience further fostered strong support for alternative cancer care as well as firm convictions about how to judge the merits of new therapies. Political deference to public opinion in turn curtailed state and professional interference with unconventional practitioners. Thus, this book offers a revised interpretation of medical power, one in which the influence of the laity and alternative healers moderated, and sometimes even mastered, the authority of the medical profession and the state. As the case of Ontario demonstrates, the health culture of North America during the first half of the twentieth century was pluralistic, rather than monopolistic.

In his influential essay on ?framing disease,? Charles Rosenberg stresses the importance of disease concepts in history, arguing that ?in our culture a disease does not exist as a social phenomenon until we agree that it does.? In early twentieth-century North America, a broad consensus about the biological reality of cancer prevailed in both popular and professional circles: no one disputed the existence of a disease that claimed thousands of lives annually. Its management, however, provoked considerable debate. Although the public, the medical community, and various government agencies recognized the need for a concerted campaign against cancer, they could seldom agree about how best to conduct the battle. Conflicting ideas about neoplastic diseases undoubtedly contributed to the controversy. Sufferers and healers sometimes proposed radically different solutions for ?the problem of cancer,? based on divergent explanations of the causes and course of the disease. Yet ideas about cancer represented only a small portion of the beliefs and behaviours that shaped personal, professional, and political reactions to the disease. Definitions of health and illness, experiences with medical care and personnel, and convictions about social responsibility and personal autonomy profoundly influenced health care choices and policy. Therefore, rather than focusing only on disease concepts, this study frames the complex perspectives of sufferers, healers, and legislators confronted with the growing threat of neoplastic diseases. ?Frame-work,? if you will, provides the framework for the book.

?Scientific medicine? has provided one of the most obvious and compelling frames for cancer in the twentieth century. Not surprisingly, much of the literature on the history of neoplastic disease chronicles professional achievements, reflecting and reinforcing perceptions of the primacy of conventional medicine. To some extent, scholars have focused on these aspects of the story because sources are readily available to document institutional initiatives as well as theoretical and technical strides in diagnosis and treatment. But historians have also emphasized professional attitudes and actions because the importance of scientific medicine is undeniable. Clinicians and researchers have not always agreed about the nature of neoplastic disease or its treatment, but their approach to illness and healing has been extraordinarily influential in modern Western society. As a result, no book on the history of cancer would be complete without some consideration of conventional medical care. Chapter 2 builds on extant studies of the history of neoplastic diseases, describing professional views as well as their implications for doctors and patients. But whereas previous studies have tended to celebrate advances in science and medicine, this book documents the confusion and frustration of practitioners and researchers struggling to manage one of the most perplexing diseases of the modern era.

Although doctors and scientists have been integral to the history of cancer, the professional medical perspective is not the only, nor perhaps even the most important frame for the management of neoplastic diseases. Because sickness usually begins at home, long before sufferers consult a practitioner, popular perceptions of health and healing are fundamental to the interpretation of illness. At the same time, personal and social experience with disease and treatment frequently determine the extent of patient confidence in and compliance with medical care. Despite the importance of the popular perspective, however, the social history of cancer, ?the view from below,? remains seriously underdeveloped. Lay attitudes and actions often receive short shrift in histories of medicine because appropriate sources are scarce as well as difficult to interpret. This book draws on medical and educational literature available in Canada and the United States as well as a rich supply of popular articles and patient correspondence to explore the lay perspective: chapter 1 examines the nature and impact of popular ideas about illness, cancer, and medical care; chapter 4 delves into the experiences of cancer sufferers, describing their reactions to treatment and the practitioners who dispensed it. Together these chapters not only recapture the voices of the laity, but also demonstrate the potency of popular opinion and the logic of health care choices grounded in personal and social experience.

Unconventional practitioners have similarly received little systematic or sympathetic attention in histories of cancer. With notable exceptions, scholars interested in alternative medicine have tended to ignore the interwar period, preferring to concentrate on medical sects popular in the nineteenth century or on the revival and proliferation of unconventional therapies since the 1960s. But, like neoplastic diseases themselves, alternative medicine has been a persistent phenomenon throughout the twentieth century. Although organized sects, such as chiropractic, enjoyed limited appeal and influence prior to World War II, a veritable cornucopia of proprietary treatments emerged in this era, offering relief for all manner of chronic and intractable conditions: from arthritis and cancer to tooth decay and obesity, each affliction had its own peculiar remedies. Alternative medicines such as these deserve serious scholarly attention not only because they constituted a significant and enduring health care option for multitudes of sufferers in North America, but also because they posed a serious challenge to the tenets and practitioners of ?scientific medicine.? Chapter 3 examines the confrontation between doctors and the three most popular unconventional healers in Ontario in this period, revealing the difficulties associated with distinguishing credible from fraudulent therapies. These alternative practitioners figure prominently in chapters 4 and 5 as well, in relation to the experiences of sufferers and the actions of the state. Although the medical profession frequently condemned unconventional cancer care, patients and the public found that alternative healers provided a congenial and compelling frame for the problem of cancer.

Unlike sufferers or alternative healers, government initiatives have attracted considerable attention from historians, particularly since the US Congress declared ?war on cancer? in the 1970s. Scholars writing about the history of cancer policies and programs have described a formidable alliance between the medical profession and the state in the twentieth century. Through legislative and financial backing, politicians have increasingly sided with doctors in the battle against neoplastic diseases. But in the process of describing the collaboration between the medical profession and the government, historians have largely ignored the impact of public opinion. Although state support for conventional practitioners permeates the history of modern medicine, it has never completely eclipsed political deference to the laity because elected officials have seldom had the luxury of ignoring the demands of their constituents. Chapter 5 examines the relationship between the government, the medical profession, and the laity in Ontario, focusing on the controversy aroused by alternative cancer care. Although the political authorities continued to rely on the medical profession throughout the first half of the twentieth century, lay confidence in unconventional healers and popular convictions about patients? rights seriously constrained the medical-political alliance. Public opinion persuaded some politicians to adjust their frame for cancer.

As with many books, this one has temporal and regional boundaries that require explanation. Although a discussion of cancer in the modern era might conceivably cover most of the nineteenth and twentieth centuries, this study deals with the period between 1900 and 1950. During these decades, cancer first assumed alarming proportions in North America, eclipsing other ailments as the b?te noire of the medical profession, the laity, and the state. As a result, private and public discourses on cancer were uncommonly rich in these years, especially in the interwar period. Governments became actively involved in the provision of cancer care and cancer control programs, and while conventional cancer care remained relatively constant throughout this period, unconventional cancer care diversified, reaching a peak of vibrancy in the 1930s. Therapeutic stability within the medical profession juxtaposed with therapeutic ferment at the margins of or outside the profession provides an incomparable view of contests over medical authority and legitimacy. After 1950, by comparison, treatment innovations such as chemotherapy, and the creation of public and private health insurance schemes helped to shift the balance of power decisively in favour of conventional medicine. In other words, we find in this period an unprecedented intensity of concern about cancer as well as a degree of ambiguity about medical authority that waned in later years. For these reasons, I have chosen to focus on the early twentieth century, hoping that other scholars will write those other chapters of the modern history of cancer.

?Location, location, location? is not the watchword of realtors alone. Historians must also consider the import of national boundaries, regional influences, and local conditions on the experiences of men and women living in the past. Yet the scholarly community, especially in recent years, has been deeply divided about the merits of local, regional, and national histories. Some historians have questioned the significance of work based on case studies. What do we learn about the past from a single example or a restricted sample? Is it advisable or even possible to generalize limited or local experience to larger contexts? Other scholars have suggested that case studies may provide ore reliable or relevant views of history. Can we reach a greater degree of certainty or complexity by concentrating on discrete portions of historical experience? Do we mistake the past when we imbue political borders with cultural or social significance? I have tried here to exploit the advantages of the case study method while compensating for its limitations: each chapter is laden with rich detail about the beliefs and behaviours that constituted Ontario?s response to the problem of cancer; each chapter situates the Ontario experience within the context of North American society, drawing on both primary and secondary sources for Canada and the United States. Some readers may find this method distressing or unconvincing, but I believe that the questions I have posed here cannot be pursued as meaningfully in a different context because the provision and regulation of health care in North America generally took place at the provincial or state level. Negotiations over medical authority and therapeutic legitimacy, even those that originated with intensely private experience, were consequently played out on a regional stage. Moreover, this approach has the virtue of acknowledging the specificity of personal and local experiences while asking where those experiences are located in the larger cultural, social, and political landscape of the past.

As I was researching and writing my doctoral dissertation, the original incarnation of this book, one of my advisers, Jim Connor, hounded me with a question: ?What is the one thing you want readers to remember when they finish your thesis?? For many PhD candidates and not a few professional historians, this is a perplexing question and, at the time, I responded predictably: ?I want to tell them about illness experiences and alternative medicine and doctor-patient relationships and the politics of health care and ..." Finally, a friend, Phil Zachernuk, suggested helpfully that the best response might be: ?Where they left it.? It has taken me a good deal of reflection both to appreciate the importance of the question and to devise a satisfactory answer. Although it is true that this book traverses many topics and confronts many issues in its exploration of the history of neoplastic diseases, it is ultimately a book about power, about whose views of health, illness, and healing have prevailed in medical encounters, in health care policy, in health culture. In addition to providing a revised interpretation of the past, the book has implications for our understanding of contemporary health culture. As long as we accept the premise that doctors monopolized health care in the last century, we will continue to believe that criticism of and opposition to conventional medicine is a recent phenomenon. And as long as popular disenchantment with the medical profession is seen as a product of the 1960s counter-cultural revolution, we will continue to formulate ?solutions? to the current health care crisis that ignore enduring traditions of independence, self-help, and anti-authoritarianism. I hope, therefore, to convince readers to re-visit and re-evaluate scholarly assumptions about the cultural and social authority of conventional medical practitioners in the twentieth century. Of course, I also hope readers will remember ?where they left it.?