Incurable and Intolerable

Contents

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pp. vii-

Acknowledgments

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pp. ix-

Many years went into writing this book, and during this time I have enjoyed the support of a large number of individuals and institutions. First and foremost, I’d like to thank my mentor George Weisz, whose vast knowledge and probing criticisms were a source of inspiration. His many kindnesses helped me see this project to the end....

Introduction

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pp. 1-14

It is extremely difficult to tell someone that their illness is incurable and that they are going to die. I know only too well, because I have had to do it often. I have spent my professional life treating chronically ill patients, most of whom were infected with the human immunodeficiency virus (HIV). Before the advent of effective antiretroviral drugs, a diagnosis of AIDS was essentially...

1: “What Are His Chances, Doctor?”: The Semantics of Incurability in the Nineteenth Century

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pp. 15-36

When patients nowadays go to a physician, the questions uppermost in their minds are usually “What’s going on?” and “Is it serious?” In responding to the latter, physicians have increasingly relied on prognostic templates that presuppose that each disease has a distinct natural history. These outcome models, in turn, decisively shape doctors’ attitudes and management strategies. With...

2: Reinventing Hope in the Late Nineteenth Century

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pp. 37-57

Despite their dismal track record treating cancer, physicians in the 1860s were again questioning whether the disease was inherently and inevitably incurable.¹ Reluctant to admit defeat, they embraced the spirit of a colleague’s earnest reminder that “when old age and death alone will remain untreatable, then medicine will have attained [its] goal.”² Three decades...

3: “I Told You So”: The Rhyme and Reason of Chronic Disease

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pp. 58-69

During the nineteenth century, the science of chronic disease was intimately tied up with questions surrounding the meaning of life. If Sir Thomas Sydneham’s centuries-old suggestion that mankind brought such sicknesses upon itself still represented the dominant conceit, Sir James Paget put his finger on something equally decisive.¹ In struggling to explain terminal illness,...

4: Death, Decay, and the Genesis of Shame

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pp. 70-89

Ritual and narrative have long been sources of solace in the struggle with adversity. In the Christian tradition, illness represented the price of original sin, a symbol of the transitoriness of earthly existence, and a foretaste of hell’s torments. Most importantly, however, disease was a vehicle of spiritual...

5: Medical Attitudes toward the Care of Incurables

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pp. 90-112

Shortly before Christmas 1866, Auguste Runeau de Saint-Georges had his physician and his confessor join him for a sumptuous meal. He ate nothing. His condition, worrisome in September, had steadily worsened since. Beyond wanting to make a show of good graces, he had presumably invited his physical and spiritual doctors to thank them for their efforts at assuaging...

6: Medical Strategies, Social Conventions, and Palliative Medicine

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pp. 113-135

Prognosis has long aff ected patterns of social behavior and is justly deemed a critical determinant of something now known as patients’ “illness trajectory.”¹ It should come as no surprise that nineteenth-century society had weighty expectations in the setting of chronic progressive illness. Physicians’ behavioral blueprint essentially consisted of three healing gestures:...

7: Ecce Homo: Opiates, Suffering, and the Art of Palliation

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pp. 136-158

Opiates have inspired several distinct literary traditions. Physicians and poets have celebrated their medicinal virtues for millennia, while (non) fictional accounts of their pleasures and pains have proliferated since the nineteenth century. Long intrigued by famous habitu�s, historians have progressively broadened the scope of their reflections. A range of studies,...

8: The Good, the Bad, and the Ugly: Incurability and the Quest for Goodness

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pp. 159-174

Dr. Georges Daremberg’s 1905 study of tuberculosis included an intriguing ethnography of chronic illness laced with value judgments. His interest in illness behaviors had complex roots. His father, Dr. Charles Daremberg, was a leading medical historian of the nineteenth century, an interest that his literary-minded son also shared. In addition to years of clinical practice...

9: The Fate of the Incurably Ill between the Two Revolutions, 1789–1848

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pp. 175-196

Soon after the unanimous passage of landmark pension legislation in 1905, one of the law’s framers observed, “It is grounded on the idea that assistance to the elderly, the infirm, and to incurables is not merely a good turn offered up by the collective, but a legal obligation.”¹ Coming twelve years after a better-known statute guaranteeing free medical care for the indigent, the...

10: Caught between Initiative and Inertia: Responses to the Incurably Ill from 1845 to 1905

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pp. 197-215

During the second half of the nineteenth century, various private charitable initiatives began providing assistance to the incurably ill. For a start, they benefited from a growing number of focused charitable offerings. Of course, the therapeutic limitations of contemporary medicine meant that tremendous unmet needs remained. The elderly, infirm, and incurable...

Conclusion

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pp. 216-221

Today we speak of chronic and/or degenerative diseases, and sufferers previously classifi ed as incurable are now considered disabled, chronic, or terminally ill. There are no longer any Homes for Incurables in Boston, Philadelphia, and Brooklyn; “reputedly incurable” is also a forgotten notion. Yet despite changes in vocabulary, the related issues of prognosis and disease...

Notes

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pp. 223-276

Select Bibliography

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pp. 277-287

Index

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pp. 289-295

About the Author

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pp. 297-

DR. JASON SZABO has been involved in AIDS care and clinical research at McGill University since 1991. He also received a Ph.D. in history from McGill followed by postdoctoral training at Harvard University. His research focuses on the history of chronic disease and other complex illness experiences. He recently received a multiyear research fellowship from the Canadian Insti-...